Category Archives: Health

‘Help!!” Moving to India – have a read!

Pune Expat Advice

I am not an expert at being an expat. This is my first assignment after all and I have now been an expat for just under 18 months. In a way, this is forever and gives me the ability to claim myself as an expert on expat Pune but on the other hand it means I know nothing at all!

On arriving in India however I very quickly began to think – ‘oh why didn’t someone tell me this before I came!? Why didn’t I pack this? Why did no one know that I needed it!?’ So this is my attempt at helping you to find yourself in a better position when you arrive. It is long and extremely detailed – you don’t have to read it all -read what you need. 

Although, I hope much can be gained from this information for the working partner, it is primarily aimed at the ‘trailing’ spouse. Why? It seems little if any time, money or enthusiasm is shown by many companies / relocation companies in ensuring that the non-working partner settles in OK.

Why not? It seems crazy for these people to ignore the very person who to an extent the whole success of the move depends on. While life changes greatly for the working partner, there are some remanants of life as they know it. For the non-working partner, everything changes over night but yet somehow they are expected to maintain the house, cook food and ensuring the stability of the kids all while not loosing the will to live! If they become miserable therefore and cannot cope, it is will surely but the whole endeavour in danger.

Emotional Practicalities

  1. You are going to have some of the best times of your life in the next few years.
  2. You are also categorically going to have some of the most miserable times of your life! Be prepared for it! The sooner you come to terms with that, the easier you will find living in India. I always say, ‘I love India but I don’t know why I’m not in prison for bashing someone’s head in!’
  3. Try to laugh off the negatives (so, so hard at times!) and embrace the positives.
  4. You will have an easier life than your spouse who works but at times it will not feel that way at all and at times you will be right. Try and remember that you are both facing challenges and that you probably don’t recognise the extent of their challenges at times and neither do they recognise your challenges. This is natural enough.
  5. Talk about your problems and frustrations but don’t continually dwell on them. Get your irritation out and then move on.
  6. Most importantly, don’t forget to pack probably the only thing you really need – an open mind. Don’t pre-judge people / places. Don’t be quick to jump to conclusions about situations you may have little cultural understanding of. You may grow to understand a siutation and hate it but you won’t really understand it if you reach that standpoint immediately.

Women’s Safety

I am no expert and please take the advice here and mix it with everything else you get. I hadn’t initially included this information but recently a group of women asked to meet with me to advice them on their move. It was their very first question – therefore I deemed it to be too important to leave out. Everything I say here of course will be cultural stereotyping – which of course is not right but I’m not sure how to tackle this issue in another way.

  1. Indian is fundamentally different in its approach to women / sexuality than any more westernised culture.
  2. Single Indian men / women as a whole culturally are not allowed to have sex before marriage etc. It does of course happen but in a very closeted way. This leads to men who are more sexually frustrated and naive then you may be used to. It is also a male dominated society. Women are not expected to question their husbands, fathers, brothers and this creates a certain degree of entitlement amongst men.
  3. As I will detail below when I talk about clothes. To a certain extent as a western women you may be considered easy. They watch Hollywood movies and think we all jump into bed with each other on first sight!
  4. To argue therefore that there is no increase danger for a woman in India would be wrong!

HOWEVER!

  1. As far as I am aware, I know nobody who has had any significant issues with their safety as a woman here.
  2. One lady did have her breast groped in a busy market. Not good and I’m sure that was difficult for her but that could also have happened anywhere. You wouldn’t question living in London for your safety but such groping happens daily on the tube. Someone (I believe but will never know as I shouted a loud obsencity at the top of my voice which frightened them off) attempted to potentially molest me when I was in Poland.
  3. Be sensible – just like you would be sensible elsewhere. Consider where you are going and therefore your clothing. It is wrong but some may see your clothing as you saying you are happy for them to have sex with you!
  4. If you are out at night alone then try and have your driver collect you from the door of where you are. Don’t go wandering down the road in the middle of the night to find him – would you do that by yourself elsewhere?
  5. If you are in an Uber / Ola by yourself (during the day probably not so much) then set it up (from the app) so that you can inform somebody you are in the taxi. They can then track you and then it informs them when you get to your destination. My husband can track my phone as well that provides double the information. We don’t panic about such things too much though!
  6. Consider potential groping situations. If you are in a very busy market that is largely full of men (like Juna Bazaar which I love) then keep your wits about you. If a group of men suddenly want a photo with you (sometimes they will do this without permission) then just be aware of their hands – I have had no issues with this really.
  7. Remember you have in your favour that you are a foreigner. a) men may feel a little less confident around you then they would be with an Indian woman b) if a man does something to you, the police will take it more seriously because you can bring in the media and your embassy who can then get police commissioners involved etc. Being a foreigner dramatically increases the chance that the perpetrator will be arrested and found guilty!

In 18 months in India, I have had only one instance which made me feel uncomfortable (as a sexual being!). I ended up in a brass band warehouse in Jaipur (don’t ask!). My friend was jamming with some of the guys which was incredible. One of the younger band members wanted a photo with me and when he put his arm around me to do it because it was such a tight space I was aware of the potential opportunity I was affording him so said no.

Before I could say anything else an older member of the band, told him off and told him to move away from me! That was very reassuring! You could argue ending up in a warehouse off a narrow street in a city I didn’t know was unsafe especially as there was a bunch of guys. I would not have done this with a group of young men but these guys ranged from 20 to 70! Guys under 17 and over 40 are generally very respectful and will actively prevent the younger guys from being idiots! If I hadn’t had that experience because of a fear of the unknown then I wouldn’t have had an experience that will stay with me for the rest of my life!

Clothes

An obvious concern is what you should wear and what is appropriate.

  1. Men can effectively where what they like – within reason.
  2. Women have to be a lot more careful. Why – many men are sexual frustrated and innocent and can’t quite distinguish between a strong confident woman and someone they perceive to be easy! It is not uncommon for women to be considered responsible for controlling a man’s sexual arousal! The implication therefore being that it is a woman’s fault if a man can’t control himself. This is clearly ridiculous but a fact that cannot be ignored.
  3. ‘Western’ places such as 5 star hotels, fancy restaurants etc – wear what you like – you will be shocked at some of the outfits the women wear!
  4. Local places – try and wear loose fitting clothes that cover your shoulders (a capped sleeve is no problem); something that covers your bum if you are wearing tight trousers; loose trousers; skirt / dress that is not above the knee; nothing too low on the back; don’t show your belly and absolutely no cleavage!
  5. Showing your belly in a sari is no problem at all – otherwise however absolutely not!
  6. There are areas however that are a between point between being completely westernised and being ‘local’ – Koregaon Park, Kaylani Nagar and Magarpatta being just three examples. Your clothing therefore can be somewhere in between.
  7. Not only is it totally acceptable to wear Indian clothing – especially kurta / leggings etc and indeed even a sari on suitable occasions – people absolutely love it! I probably wear a kurta once or twice a week and frankly they are so comfortable and cool. You can also do a half way house and wear a kurta with jeans – no problem even in local areas.
  8. Super high heels are not only impractical but may also be looked at slightly scandalously in some parts of town.
  9. In western style pools at hotels etc – go for the skimpy bikini – in pools frequented by mainly non-super wealthy Indians – be a little more conservative.
  10. My suggestion is to play things a little bit more conservatively until you get the lay of the land and understand how things work a little better.
  11. Forget conservative when it comes to colour and glitter – go for it! Nothing is too bling for India – ever!!

Friendship

  1. You are not alone – every single expat has come here with no friends or perhaps just one or two people they know slightly. Everyone has been in your situation in the last 3 / 4 years! They understand. You will find all expats welcome you with open arms – if you make yourself available. Remember you need them but they also need you – people come and go here and when your friendship group begins to dwindle you have to be pro-active about growing it again!
  2. You will have to be proactive – colleagues who have been out here longer than you may be very welcoming but not all are or you mightn’t have any colleagues or their spouses you can turn to. So, go on the expat forums and say – ‘anyone want a coffee?’ or go to an event that somebody has organised via the forums. Doing that is hard but also a great way to make friends! Make sure you post on the expat forums that you are coming – even if it is just a ‘hi, I’m moving in a few weeks and wanted to say hello!’ I have good friends I met that way.
  3. Rather than going straight into your apartment when you move here, try staying in a serviced apartment for at least a week or two (most end up doing this anyhow) and every morning say hi to the regulars. Go and sit by the pool or the coffee shop and say hi to people. People will inevitably say hi back and they can be your way into friendships.
  4. Throw yourself into as many things as you can initially, don’t say no unless you have to and then slowly decide what it is you want to do.
  5. You will not have the type of friends that you would probably have at home. Your friends here will be a mix of ages and backgrounds – it’s great. You get a chance to discover that age and background isn’t really all that important in friendship. Remember everyone you meet here has made the decision to do something great with their life – they are happy to take risks!
  6. Saying that! Try and ignore the negative ones – they hate India, hate the food, hate the people, hate the schools, hate, hate, hate! They will bring you down. Remember, at home these people would probably hate their lives anyhow – which is probably how they ended up out here in the first place.
  7. Embrace those who embrace life here! It will be hard at times to live here but embracing it will make it so so much easier! Some are happy to lunch and shop everyday – if that makes you happy go for it. On the other hand, you will probably get so much more from your time in India if you go out and explore and learn more about the city / country you are living in.
  8. Try not to get involved in the squabbles and the falling out amongst friends. The expat community is a small one, therefore it is like a pressure cooker. Remember, how in school because you had only a small group of friends to choose from, sometimes everything would just explode into a massive argument. It can happen.
  9. Do keep in mind that the expat community is transient. If you stick to only one or two good friends at the price of ignoring others – what will you do when they leave? How will the others feel if now suddenly you want back in with them? So, yes make some good friends but try not to focus on just one group of people – meet lots of different people and sustain lots of different types of friendships. It is more effective long-term and much more interesting!

Emotionally Dealing with Locals

  1. It sounds arrogant to say that you need to learn to deal with the locals. If you don’t learn, you may well lose your mind!
  2. Always keep in your mind that Indians are wonderful, wonderful people whose only real intention is not to disappoint you. Rather, not to disappoint you in the here and now.
  3. Indians will lie to you, placate you with mistruths, not tell you the whole story! Why? They don’t want to disappoint you!
  4. It is incredibly frustrating! There have been times where I have wanted to hit my head against the wall or slap someone I have been so annoyed!
  5. Remember! You are not alone! Speak to anyone (Indian or not) and they will tell you, they feel the same way!
  6. Working out how to play the system will help (see below).

Physical Practicalities

Dealing with locals

  1. Recognise that there is a group of Indians who firmly believe in being honest and sticking to the rules. They are unlikely to be flexible in this.
  2. My feeling is that they understand that in India if you are going to try and be honest, you have to be honest in everything otherwise the border between honesty and dishonesty is too vague.
  3. For example: do not expect a driver who is incredibly honest to be happy to park in a no parking area even for a minute. They might do it because they don’t want to inconvenience you but they will be panicking – it is better if you tell them to leave and come back in 5 minutes.
  4. Embrace these people even if at times they are tricky to deal with. India needs more people like them!
  5. If you are looking for precise answers – don’t ask an open question!  Get them to reiterate (several times) the answer. Inform them that you are expecting them to do what they said. Get them to reiterate once again that it will happen! Confirm with them (and get them to repeat it) what they will do if they will not be able to complete a task – i.e. call and inform you, tell you exactly when they will be there. Do not just assume ‘professionalism’ as we know it in the west!
  6. Where possible, don’t pay up front for things until they are delivered and correctly installed. This is not always possible but where possible avoid it. That way you have something companies want – your money!!
  7. If you get annoyed by someone not turning up read the situation – do you need to shout at them or do you need to be more diplomatic. Humiliating someone by shouting in front of their colleagues may mean they react even more negatively so you’re less likely to have something happen. On the other hand, sometimes being a bolshy foreigner shocks them into doing the right thing.
  8. If someone is due to come to the house, ring in the morning to confirm they are coming, ring an hour before hand and then ring 10 minutes before to check they are coming! The reality is though you will still end up waiting for hours or they still may not turn up! The contact does help  – most of the time!
  9. If someone says it will take a week, assume it will take 2 and then be pleased when it takes 10 days!
  10. Very often, you will have to pay a deposit and often that deposit is up to you. Keep the deposit to a minimum – that way if they want their money then they will have to complete the job to an acceptable standard!
  11. Don’t assume that because someone is better dressed than someone else that they are more reliable etc – often there is no way of knowing! Social status and education level are no real reflection of reliability! Not wanting to lose face goes across all stratas of society!
  12. Indians are less reserved about asking personal questions than most Westerners! This can at times be a little disconcerting. Someone will ask you how much something cost and you are left thinking ‘oh god, that is way more expensive than they could ever afford, how can I tell them!!’ or they will ask something like, ‘why don’t you have any children?’ The answer, ‘we don’t want any’ rarely being acceptable!  I have learnt either to be direct in my responses or if I feel too uncomfortable fudging the answer or answering what could have been a tangental question!
  13. Equally, as a consequence of Indians openness to asking questions, it is difficult to really insult them by your questions. As long as you don’t cause them to lose face, you are normally quite safe!
  14. Don’t allow yourself to get too het up about reliability etc – try and take the time to recognise in individuals and Indians as a whole just how nice and welcoming they are. Notice how they will always take a moment to smile at you if you smile at them!
  15. The extent that you will get stared at by locals (especially those not used to seeing foreigners) can at times be overwhelming. I, however, consider the way Indians stare to be far politer than in the west where we pretend not to be staring but actually are!
    • 99% of the time the staring is not intended to be intimidating (it is our western training that makes it feel intimidating).
    • Try smiling at people who are staring at you. If they mean well, they will smile back. If it is a man staring at a woman, he may look a little startled and look away – eye contact with women in some parts of society is frowned upon.
    • Don’t however smile at big groups of men if you are alone (or probably ever).
    • Some men will stare in a rather intense way when they pull up beside you in traffic – from the safety of my car, I give them a huge stare if I feel they are staring inappropriately. They panic and don’t quite know what to do! I am in the safety of my car however so there is nothing these guys can do if they don’t like my reaction! Sometimes it is just nice to demonstrate how the staring can make you feel – yes, I know childish!
  16. Photographs. Just accept that you will be photographed a lot!! There are however several ways that I find useful to deal with it.
    • You will begin to learn where people are most likely to take your photo – normally where they are not busy – shopping malls, tourist locations etc. In the busy streets of Pune you would think you would stand out more so more photos, I think however people are just too busy to worry too much about you there.
    • If asked politely, then look around – are there lots of young men who will pounce on what they see as permission being granted for a photo opportunity? If this is so and will make you uncomfortable – say no and explain why if you wish. If no one is there, then what is the harm.
    • If (usually young guys or people with young kids) suddenly come up to you and take a photo ‘with you’ without your permission then I normally say no – bas, bas (enough – no). That is quite simply rude.
    • If someone is just quietly taking your photo and you spot it, who cares! I take photos of Indians all the time – sometimes with their permission but if it is from a distance or they won’t notice without permission, so how can I complain. It is very rare here for anyone to say no to having their photo taken – usually people see my camera and ask me to take their photo – even though they can have no expectation of ever seeing the photo!
    • It is not unusual for a lovely polite photo session to become a free for all especially if you are a woman and look very un-Indian – I am blonde and blue eyed! Sometimes just saying bas, bas is enough but sometimes you simply have to walk away.
    • Why do people want to take your photo? Who knows? Some say because they want to show to their friends / families this foreigner they know – especially the guys this is a bit of a status symbol! Crazy right?!

Accommodation

Your relocation agency’s quality is key to this! Are they operating really as an estate agent or are they genuinely trying to make sure your relocation process is as seemless as possible?

  1. House v apartment is truly up to you! If a central location is more important then it is more likely that you end up in an apartment. If location isn’t key and you really want a garden etc then there are plenty of houses available.
  2. Do not expect to find a 1/2 bedroom accommodation that is of acceptable standard even if you are by yourself! You will end up with at least a 3 / 4 bedroom accommodation – 4,000 sqf plus! Smaller properties will be of such poor quality that there is no point even looking at them. As a consequence irrespective of whether you are single or with a family, you will end up finding similiar properities at a similar cost! Most companies don’t seem to understand that.
  3. Think really carefully about how far your accommodation is from work / school. Traffic can suddenly get very bad here so being as close as possible but in an area you are happy to live in is really important!
  4. Do not put any pressure on yourself to choose an apartment from what the agency show you. If you don’t like any, then you don’t take any!
  5. If your agency is failing to show you decent accommodation then you can use another agency – your company may disagree but it is common practice here. Your contracted agency is responsible for all the legal work etc but the new agency once they find your apartment are responsible for negotating with landlord and the move in. The contracted agency must then pay a fee to this second agency. Almost every single family out of the 15 or so that moved here with our company did this!

Looking at apartments

  1. Key to understanding how house hunting here works is that most landlords will do absolutely no work to your prospective apartment until you have signed the contract. A good relocation will verbally / via email state you will take the house but will not make you sign until they are satisfied with the quality of what the landlord has done.
  2. If an apartment has not been lived in for 2 years, you may have 2 years of dirt when you walk through the door. There is no natural attempt to make the acccommodation look as good as possible before showing a prospective tenant.
  3. If the place is new, do not necessarily expect the walls to have been painted or floors to have been laid. Certainly, don’t expect any storage outside of the kitchen.
  4. The state of accommodation can be quite off-putting and upsetting. You can’t help but think that your company are having a joke expecting you to move into such places! The reality – most will be lovely once done up!
  5. A good relocation agency will do their best to show you completed (minus storage) accommodation that is clean and presentable. To do this however, they need to ensure that there are enough landlords willing to do the work prior to showing a client!

Key Questions to Ask

Water

  1. Is water 24 hours? – due to water rationing some societies (housing groups) have limited water. You are unlikely to see these but it is always worth asking.
  2. Is water only PMC (city council) or is it also private? If also private, less likely to have water shortages as the water is bought in.
  3. Is there any water restrictions? i.e. is there no water for certain times or the day or has there been a history of restrictions. If you move here after monsoon, it is unlikely to have any restrictions but that doesn’t mean in the height of the summer there wasn’t! Look for notices in communal areas that suggest water rationing – often it takes months and months for such notices to be removed! One agency swore to me that there were none and had been no historical water restrictions – right next to a poster explaining the water rationing!
  4. Is there an electronic water filtration system? Is it built in? i.e. is it plumbed in. If not, is there a dispenser? If not, will the landlord be willing to install one. If there is, ensure that the water filter is serviced before you move in. Who is responsible for the maintenance of the water filtration system?
  5. Some buy in additional water and don’t drink the filtered water – I always drink the filtered water and I have had no problems at all. It is a matter of choice. Use the filtered water for washing vegetables, water for kettle etc. Some also use it to brush their teeth.

Electricity

  1. You will have lots and lots of power cuts, that you can’t avoid so it is a question of how your society is set up to deal with them.
  2. Does the society have a generator? If so, does it provide a complete supply? i.e. every plug etc. If not, what will the generator power? Does the generator operate 24 / 7 (most do)
  3. Try and find out the average cost of electricty for that society. Some societies (such as One North in Magarpatta) are horrendously expensive – as in fall over in shock when you get the bill expensive. Others are more ‘acceptable’. The fancier the accommodation / the bigger the accommodation the less ‘acceptable’ your electricity bill will be.
  4. If a house – does it have solar panels? How much electricity will they provide? Is there a back up system for example when it is monsoon and the sun doesn’t shine through the clouds for months!
  5. Make sure your agency provides you with your account details including the admin number for your area. You need this to pay your bill online. Electricity Bill Payment

Gas

  1. Gas is extremely cheap! My biggest bill was 300 ruppees (of which about 275 ruppees was admin charges!).
  2. Gas is largely only used for the cooker.
  3. Does the society have piped gas?
  4. Does the accommodation have bottled gas? Will the landlord provide two bottles? How do you change them? What are the contact details for the person to change the bottles?

Internet

  1. You should try not to move into a property until the internet is installed – you need it for whatsapp (must have communication method!) amongst many other reasons.
  2. Is there a fixed provider for internet – most Panaschil properties for example use a company called Lunatec (otherwise known as the lunatics!). They are awful and very very expensive but Panaschil provide nice socities! We paid about 80,000 ruppees for 6 months when we lived in One North – effectively unlimited.
  3. If there is no fixed interent provider who do the agency recommend – look at all the deals they suggest and deals you find online carefully.
  4. We use YouBroadband now we have moved – they are a pain to be installed but very good once installed. We have 800 GB of data for 90 days at a total cost of 5,000 rupees so an incredible saving for a far better system!
  5. Airtel also have 4G internet. We used it for about 2 months but ran through the 100GB of data in a week every time! It was also quite expensive.

Your first few weeks

My first few weeks in Pune were at times horrendous! I was so frustrated and so physically and emotionally drained that I found it really hard work!

This was particularly the case after we moved into our apartment. Every single person I have spoken to about my situation said they had the same experience – so will you and you are not alone!

  1. Priority when you move into your apartment (clearly your children but after that!) is making sure you have enough food and water so that you can stay home all day! You will spend a lot of time hanging around without the ability to go out and get food. If you don’t eat, all of what you will have to deal with will be so much harder!
  2. You will have lots and lots of people coming to deliver things – washing machines, dishwashers, water purifiers etc! They will all come late or not at all! You will not be able to go out though just in case they come!
  3. Try and make sure the internet is installed before you move in, this can take time. Having the internet means you can do things while you are waiting / hanging around even if it is just watching a movie.
  4. Do not move in until everything the landlord said would be done is done. Once you are in, they have no incentive to do anything!
  5. You may have a big fight on your hands to make sure the apartment is actually clean when you move in. Refuse to do so until you are happy with the cleanliness. Here, landlords will only clean and fix up the apartment often once the contract has been signed. It is your relocation agents job to fight your corner for you. If they are refusing to do this, go above them to their boss or to your company who employs them. Remember, your move is paying their salary.
  6. Before you move in try and ‘break’ everything in your apartment. Some things may have been made to look not broken but…
  7. You may have a number of days when you first move in where the landlord / developer will fix things for free – after that you will have to pay unless you are prepared to fight for it!
  8. This will probably be the most stressful time you have here. You will get through it. Don’t think that you will get away with it, you won’t – nobody does! You are better being prepared for it (as is your spouse for the stress they will return to!).
  9. Until your air freight arrives, you may well have to ‘camp’ at home – beg and borrow from people. My things are always in new people’s house. My way of repaying those people who lent me things when I first got here. If you can’t – who cares if you buy a few plates and glasses its not the end of the world and it won’t break the bank.
  10. Try and do something nice every day / week during these first few weeks even if it is just to go out for a coffee one evening / morning. It will help you deal with things and remind you why you came here.

Staff

Maids

  1. It is not a luxury (well not a huge one) to have a maid. It is so dusty all year round that your floors will need to be brushed / hoovered and washed every day as will tables need dusting etc.
  2. You will go mad if you stay at home all day and clean! You need to get out everyday and do something and meet people. If you are working, then a maid is definitely not a luxury!
  3. It is hard getting used to having a maid but it is also so nice!
  4. How often they come is up to your needs and your family’s needs. Our maid comes four days  a week for three hours a day. We have no family and I don’t need her to cook and I like one day a week where nobody is in the house other than me! Others do 8am to 4. So that they can help get kids up for school and then help when they get home. Others do longer hours again. Some even live in.
  5. What to consider when deciding your maid’s hours. Do you want your maid to:
    • Clean
    • Cook
    • Shop for food
    • Get children up for school
    • Take children to school and collect them
    • Water plants / garden
    • Play with children
    • Iron
    • Put clothes away
    • Wash clothes (be careful many don’t have washing machines and so most don’t get their maids to do this)
  6. Go on to expat forums on Facebook and ask what a good salary / hourly rate is. Again depending on the hours they do, you may pay them a salary or an hourly rate.
  7. My rate Oct ’16 – 120 rupees / hour including bus fare bus fare (some will ask for it in addition to their hourly rate – payment is up to you)
  8. Facebook forums and talking to expats is the best way to get a maid. Get a maid who is recommended by someone who understands western needs. Your driver may recommend someone good but if they have never worked for a western family they may need training. My maid hadn’t but after a few months was doing a great job!
  9. Be very clear in your mind, what you want them to do and express this clearly from day one. This gives them a chance to say that it isn’t something they want to do.
  10. Also be clear on what level of English is acceptable to you. Do you want them to be able to read and write English? I find having a maid who can read English is useful – I have a whiteboard where I write every days’ tasks and so if I am out it doesn’t matter.
  11. Be friendly but remember you are their boss not their friend. You need to be able to switch from, ‘How are you?’ to ‘How you did this was not acceptable’ without confusion.
  12. Be really accurate in how you explain what you want done. If you want a window sill cleaned – show them how to do it and then say – ‘you need to do this to all of the window sills.’ If you want them to clean the floor – explain that they need to move furniture out of the way etc etc. It is not that you are trying to say they are stupid but some won’t take responsibility for things you haven’t told them to do! Frustrating? Yes!
  13. Don’t assume they will know how to use household equipment like hoovers, clothes horses, dishwashers etc. If you want them to use them then show them how to plug them in, turn them on – physically how you use it and what you use it for. I showed my maid how to hoover the marble floor but then she didn’t hoover rugs because she didn’t know you could use it on rugs!
  14. It may take more than one training session for them to get confident enough to use the tool. Watch whether it is being moved (if you are out and can’t see it being used) – if not, revisit the training.
  15. Toilets. Toilet cleaning is consider a task for the very lowest caste. Some won’t want to do it. Ask them if they are willing to. If not, it is your decision – it takes 2 minutes to clean a toilet yourself or is that a deal breaker? If you want them and they refuse to clean toilets – try going into the bathroom when they are cleaning it and clean the toilet yourself. Some will be horrified that ‘mam’ is cleaning so will do it themselves. Caste is wrong but its impact does still exist.
  16. Explain that they can pick up things and dust underneath them. Explain that you expect them to be very careful of your things but if something is accidentally broken it is not the end of them world but they must tell you it happened. Otherwise you may look and look for something and wonder what you have done with it!
  17. You can leave your maid alone once you trust them and how long this takes will also be dependent on where they have been before and how trusted they were. (clearly you don’t take a maid where there is any question of trustworthiness!). Leaving them alone may take a few days or a few weeks.
  18. Some will give their maid a spare key, others wait for them to arrive and then go out. We used to have biometric locks so my maid used a code to get in when she first worked for us. Remember that if you have a big problem with a maid, you may not be able to get a key back so where possible give a code. On the other hand, most expats have given a key to their maid.
  19. I like to assume I can trust my maid but at the same time I don’t want to provide temptations that she may not be able to resist. Remember she will see things in your house that she could never afford in a million years. She may well see more money that she can earn in a few months or even years. 
  20. Lock away all cash and jewellery – most apartments have at least drawers with locks until you trust them. You may also want to lock away anything that is easy to pick up and put in your pocket e.g. iPad. I did in the beginning but very quickly stopped. If you are going away on holiday and your maid will be in your house then do lock away all valuables.

Driver

  1. Some drivers come with the car and you have no choice who you get but even if so, try and influence things as much as you can.
  2. Again, word of mouth is the best way to get a driver but be careful. As a driver told me, anyone can drive for you but they won’t necessarily be a driver!
  3. Interview and trial drivers – get them to take you out for a drive around. Give them a variety of places to go and see how do they deal with it. Like with your maid, thing about your priorities – what do you want from them.
  4. A good driver will once given an address (in advance) work out where it is before you leave. If you give them an address they’ve never been to and expect them to leave immediately – good ones will ask you for more detail, call someone who might know or ask you to call someone who might know. The bad ones just drive in the general direction and hope someone will be able to tell you where to go! The rickshaw drivers (who they normally ask) usually don’t know but it will lead to a huge conversation about the foreigner in the back of the car!
  5. If you can’t give your driver the exact address of for example a shop try and give them a contact number.
  6. Try and get a driver who speaks enough English that you can communicate relatively easily. They need to be able to write in understandable English as WhatsApp / text messages will be your main means of communication. Level of English will also be affected by how much you want them to be able to show you around, explain about Pune and generally just chat to you – or not – dependent on what you want.
  7. Ideally they should have a smart phone so they can use whatsapp and can look up maps etc. Cars do not have GPS here (think maps aren’t good enough!). Remember that if your driver uses WhatsApp it costs them money. My mobile bill here is laughably small but it may constitute 5% of my driver’s monthly income if he uses data. You may want to add a some extra money for data if this proves to be an issue.
  8. Your driver once appointed needs to sign a contract so that somewhere they have agreed officially to what your expectations are. Mention hours, salary, cleanliness and presentation, car cleaning, alcohol, mobile phone use, what happens if they are ill, what happens in an accident, over-time, being away overnight etc.
  9. Give your driver a month’s trial before you tell him he is permanent.
  10. Watch your driver’s speed, lane discipline (within reason), mobile phone use, time-keeping, how well he notices hazards ahead, use of gears, relying on breaks etc.
  11. As said about maid, you are not their friend but their employee so be friendly but not their buddy. It is quite likely that you will have a problem with them and a firm word is often effective! Inadvertently however when we had decided our current driver was so bad we were going to replace him, we solved our problem with him completely! We had a driver come for a trial – we never told our driver. From the next day however he was brilliant and has remained so. Why? We think our security guards warned him off and he knew he had to sort himself out!
  12. Save other people’s drivers’ numbers so that your driver can call them if you need to go somewhere that they know. Your driver should also accept phone calls from your friends wanting the same.
  13. You will need to pay for petrol (probably). Depending on how well you trust your driver, you can give them the money and they can just do it and give you a receipt. Be aware though that some drivers have a deal with petrol station managers where less petrol is put in but a receipt is provided for more money!
  14. Your driver will also need a kitty to pay for car parks. Some provide a kitty but some just give money every time it is needed. This can be receipted or not dependent on what you feel about your driver. I find it easier just to leave them with 200 ruppees or so – that way you don’t always have to have cash!
  15. Drivers can go away over night. You are meant to pay them 500 rupees but we pay more – some disagree with us completely!
  16. I feel very guilty about getting my driver to work over time or spend too much time away from his family, on the other hand overtime means more money and more money means for some their children get a better chance in life – have opportunities. Drivers are usually very pleased to  work long hours and even 7 days a week. For me it is a question of trying to balance my needs / their desire for more income / their need for a family life.

Lending money

At some point all maids / drivers / gardeners will ask you to lend them some money. Everyone you speak to has different opinions about it and there is probably no right or wrong answer. If someone asks you and you aren’t sure, just talk to your friends and ideally locals with their own staff and see what they think. Do however consider the following factors (amongst others more specific to your member of staff):

  1. Why are they asking? Is it really a necessity? Remember, providing good wedding presents etc is a social necessity and about maintaining face. Education is a way out of poverty so paying the costs of a child going to an English medium school will be so important to people. My maid recently borrowed money off me just in case her pregnant sister had problems after she gave birth (for cultural reasons my maid would have been expected to pay the bill). I agreed. In the end, there were huge problems and so my money meant the sister could get good quality medical care quickly.
  2. If they want to buy school books or school equipment, are you better going with them to buy it rather than just handing over the cash. Remember it is also a question of maintaining face – if you insist on going to the school to pay the fees, that will be saying to their community that they can’t afford the fees and they will therefore lose face.
  3. Do you trust that they will spend the money on what they say it is for? if not, do you mind if they don’t?
  4. Can they really afford to pay you back? If they don’t pay it back, how concerned are you?
  5. How much will they have to pay out of their salary every month?
  6. Are you and they both happy to have some form of payment card where you and they sign to say how much is owed and how much has been paid?

Ultimately, the decision to lend money is yours.

Bonus and Holidays

  1. It is traditional for you to pay your members of staff a months salary at some point in the year, usually Diwali (November). If they are non-Hindu ask them when they would like their bonus or do they want it split between two different periods (e.g. Diwali and Christmas).
  2. You may ask your maid to work a few more hours during the lead up to Diwali doing for example a spring clean.
  3. Your driver’s holiday time is relatively easy – when you are not there, they get a holiday. They should however have an additional week’s holiday during their most important religious holiday so Hindus – Diwali and Christians – Christmas.
  4. Your driver may also need specific religious days off. I try and find out what are the important days during religious festivals and either minimise the hours he works that day or if possible tell him I don’t need him e.g. if he goes to temple in the evening, I try and make sure I don’t need him in the evening. It can get frustrating however between September and November – it feels every second day is an important religious festival they must have time off for! I recently made my driver work on Dussehra (Oct) and regret it – it wasn’t right. Other days, other than diwali, I think are completely acceptable to work.
  5. Maids are more complicated. If you are away for three weeks then your house will still need cleaning so she will still need to come in. If I am away for a long period, I suggest she takes a week off during this time or perhaps doesn’t work every day but 2 out of 4 days.
  6. If you are away, then your staff members should be paid – it is not their fault you don’t need them. Payment for when they take time off is up to you and them and what you have agreed. As long as it is not ridiculous holidays, I have no problem paying them, they have the right to a holiday too!
  7. Once you have an Indian bank account, it is worth asking your staff whether they want to be paid straight into their bank accounts. I hadn’t consider it until my maid asked me to pay her into her account – with no money coming into her account regularly she wasn’t able to set up any payment systems to enable her to get a fridge or a freezer. She needed proof of an income.

Health

  1. Some people panic about health when moving to India. Pune has a population of 6 million and growing – it has all the modern amenities if you know where to go!
  2. Hospitals – you will probably be shown Ruby Hall and panic! Relocation agents always bring you there and expats can never work out why although many do still use it! There are more ‘private’ sections of the hospital that are fine though (usually!) My recommendation is Columbia Asia. My friend even had her baby there! You can just call up and see a GP or even a consultant without any waiting time – sometimes even the same day. They also have an emergency department (at the back of the hospital building) where you can go with a broken leg etc.
  3. Bring enough prescription drugs with you to do you for a few months. If you need to see a doctor regularly make sure your relocation agent arranges this and be sure you are happy with the doctor / hospital. Insist on seeing others if you are not. Remember the relocation agent works for you!!
  4. You can get prescription medicines over the counter here without a prescription (and they are seriously cheap)- this can be good but they may not always be what they seem. If you are getting prescription drugs over the counter, try and get ones recommended by others and from a chemist that is recommended. You are better to go to a doctor first. I recommend Khrishna Medical, North Main Road, Koregaon Park. I have used them repeatedly with no problems at all!
  5. You will get diarrhoea here and you may get it from what looks like a dodgy restaurant or a five star hotel – you cannot control it really! Make sure you bring dioralyte (you can get local equivalent) with you – you can get it but if you are sick, you don’t want to be searching for it! Oddly, Ibuprofen works brilliantly for some people in stopping diarrhoea.
  6. If you think you may have eaten something dodgy – try a probiotic drink (can get them in most supermarkets but especially ones aimed at expats).
  7. Mosquito bites – you will have lots of bites in the beginning (lots) – we are in the mountains so your blood will thin over time – thicker blood is tastier so they love newbies!! Bring bite treatment roll-on (usually has ammonia in it).  Also a good tip is Vicks – VapoRub! You can get tiny little tubs here that you can easily keep in bags.
  8. You can buy anti-mosquito cream very easily and incredibly cheaply here. Keep a tube in all your bags! Worth also investing in a mosquito bat. Most shops on the side of the road sell them. You can always ask your driver.
  9. Should you have no bite treatment creams a good solution is the back of a metal spoon as hot as you can bare to have it on your skin and for as long as possible. This kills the nerve endings that makes it itchy. Another option is to use your finger nail to make a cross in the bite mark – be careful though open wounds could potentially get infected – not something you really want to happen.
  10. You need to be aware of malaria. Pune is a very low risk malaria area but if you are travelling outside of it, it is worth just checking.
  11. Dengue Fever is also prevalent in areas with water such as by lakes and rivers. There is nothing you can take to stop you getting dengue other than using mosquito creams. Make sure your house has mosquito nets installed! This should be a deal your relocation agents negotiates with your landlord.
  12. Hydration – everyone suffers from dehydration when they first get here. Drink lots of water but also soda water (better than water for hydration purposes). Fresh lime soda mix / salty – you can order it in any restaurant and is easy to make at home with sweet limes).Watch your salt consumption. A craving for salty crisps / chips is ok if it stops your headaches until you get used to the heat.

Taxis and Rickshaws

Taxis

  1. Use a taxi service such as Uber or Ola or one recommended to you by a friend.
  2. Taxis are extremely cheap. I took a taxi all the way across town (about 40 minutes) and it came to 500 rupees (10 dollars / 5 pounds)
  3. Uber and Ola are paid online so you don’t have to worry about carrying cash or your driver cheating you.
  4. Both companies are fairly reliable but probably not advisable to travel alone in at night especially if you are a women.
  5. You order your taxi online and can use a pin to say exactly where you are and then online say where you are going – this helps if the taxi driver doesn’t speak English.
  6. You are unlikely however to be able to use the apps until you have an Indian bank card and Indian mobile phone – some international bank cards work but it is worth checking.

Rickshaws

  1. They are quick and easy to organise although a little bit of haggling is sometimes required.
  2. Rickshaw drivers try and exploit anyone not clearly a local (including other Indians) and charge them stupid prices for short journeys just because they think you won’t know any better.
  3. Go prepared with a rough estimate of the cost of going to your destination (you can download an app (Pune Rickshaw) that allows you to do this. This will mean you can haggle  without trying to be too cheap.
  4. I usually negotiate a cost but you can go by meter but remember if they think you don’t know where you are going, they may take the long route! I prefer to negotiate.
  5. Rickshaw drivers tend to be very poor so them getting an extra 10 – 20 rupees off you is not the end of the world.
  6. Try and make sure you have the exact money in cash otherwise some rickshaw drivers will claim they have no change. I tend to save all my 10 and 20 rupees notes for this reason.
  7. You can order a rickshaw through Ola.
  8. Rickshaw drivers often don’t know locations so you will have to tell them where something is near. Addresses usually include this. If they don’t know somewhere far away, they may refuse to take you.
  9. Usuallly better to ask for a hotel by putting hotel first so not JW Marriott Hotel but Hotel JW Marriott! If you do it the first way they don’t always get what you mean! Don’t understand why. Doesn’t seem to be an issue with taxis in Pune although I have had that issue in Mumbai.

Useful phrases:

    • Hotel X kaylee-A – Hotel X please
    • Season’s Mall kay pass – near Season’s Mall
    • kay lee-A kitna – how much?
    • bahut / zyad – too much!
    • 70 rupees hay – it should be 70 rupees
    • meter say chalo – go by meter
    • left and right – they must know these in English to pass their driving test!
    • Seedha – straight on

9. Try using humour to get the right price! I find these phrases once they give me a stupid price      incredibly effective!

    • majak mat karoo! – You must be joking!
    • metre say 60 rupees hotta hay / may 70 rupees bol raha hay – if we go by metre it will be 60 rupees, I’m saying 70 rupees.

10. Sometimes, it is cheaper and easier to use an Uber / Ola car rather than a rickshaw especially for longer distances.

11. A great option is to have a friendly rickshaw driver you can call up! I feel safer traveling in a rickshaw in the dark by myself (feel I can easily hop out if there is a problem) and with a driver you know and trust – it feels safer again!

Free Time

  1. The extent of your free time will vary dependent on whether you have children and what age they are.
  2. Very quickly you can fill your time with all sorts of activities – some practical like food shopping and some more frivolous, the extent that you feel comfortable with simply ‘filling your time’ is up to you.
  3. Many, many spouses however are very talented people with great professional backgrounds – there is no shortage of organisations needing your assistance. You can volunteer your time full time, one day a week or on a completely casual basis. The poverty that confronts you everywhere however compels me to want to at least do something to combat it – as little difference as my contribution may make. What’s the best way to eat an elephant though? One bite at a time.
  4. To get in touch with charities ask on the Facebook forums or ask anyone you meet.
  5. Many expats also learn a new sport especially golf. Lessons are relatively cheap here in comparison to most western countries and it is also easy and cheap to have someone like a personal trainer. So if you are going to have more free time, why not better yourself physically too?! Again contacts can be made through your own contacts or through Facebook.
  6. Use any holiday time you have to travel – around India and around Asia.
    • Depending on what part of the world you are from – Australia / New Zealand and Europe may be a lot closer too. America is just nightmarishly far away – sorry Americans!
    • Internal flights tend to be cheap and easily available. Flights to Singapore / Colombo etc also tend to be really good value.
    • Talk to friends about where they have been and get recommendations on tour companies /hotels etc
    • Don’t be afraid of the train – I was! Now that I have even been on a train journey by myself I don’t know what I was concerned about – you might want a strong bladder though. Not sure I would recommend an overnight train journey on the other hand. Tickets are available from train stations – just come armed with your date of travel, train number and seat class – these are available through Indain Railways website but more understandably through Makemytrip or Cleartrip. You can book your train tickets online but it requires an ID number which I have failed to be able to get – some have though – not sure how!

What to buy when you get here (non-perishable)

  1. Lots and lots of passport pictures – you can do it in most malls or your driver should tell you where. Get 20+ that might be enough! They are very cheap but you will need them for everything you can possibly imagine!
  2. Big American style fridge / freezer so you can buy lots of meat at the same time and freeze it – reduces the time spent doing it.
  3. Mosquito cream and patches – chemists and most supermarkets
  4. Mosquito plugs – all supermarkets
  5. If you have a garden / balcony – citronella sticks – supermarkets, garden centres
  6. Furniture etc will be needed – will give suggestions later
  7. Cleaning materials (order from Big Basket – they are heavy so they may as well deliver it! You will have to pay in cash until you get an Indian bank card.)
  8. Basic non-perishable groceries – again Big Basket is easier.

Perishable

Fruit and vegetables – supermarket quality is normally not great (Spar in Koregaon Plaza is better). International supermarkets can be slightly better.

  1. most fruit and veg will be seasonal and things out of season will not always be great quality.
  2. buy from markets (or does someone come to your society – ask security guards) – Tulsi Baug Market (next to Mandai market) in Tulsi Baug is the best that I’ve discovered. You can also try Shivaji Market in Camp. Get someone to take you there ideally but equally get your driver to take you to the best entrance and have a look! They haven’t tried to cheat me but keep your wits about you – if it seems silly prices – joke whether it is Indian or tourist prices and simply walk away if you think it is still too much.
  3. Fruit is much, much more expensive than vegetables especially apples.
  4. Weekly veg for two in Shivaji (mainly Indian veg) around 200 rupees. Fruit for two around 300- 500 rupees depending on what we have.
  5. Green Tokri are a farm (near organic) outside of Pune. They deliver to certain parts of the city every week. Good quality (although I still think Shivaji is better) but often do more English style veg as it is called here. They also do lettuce. Order online. There are more and more of these companies in town – you will need to ask around and look online.
  6. Big Basket are good for fruit and veg too but watch quantities – easy to accidentally order 500g of dill or a kilo of chillies!!
  7. Zipmeals.in do good groceries and some cheese – quality is generally good. Best place for cheese is probably Nature’s Basket.
  8. Dorabjees – sell Green Tokri products. Fruit and veg is ok.
  9. Nature’s Basket – do very good buffalo mozzarella – only place that taste likes home! Fruit and veg are only ok – although they often do white onions (can usually only get red onions).
  10. Stalls on the side of the road can be good – just watch quality and pricing! If you think prices are too high – ask your driver to check for you.

Meat / Fish

  1. don’t usually get from supermarkets.
  2. Lamb is actually goat (don’t ask me why!!) Goat can be very nice if cooked properly.
  3. Beef until recently was illegal. It is now only legal if it is imported from outside of the state. It is still therefore hard to get your hands on! I don’t have a source but I’m working on one or two leads!
  4. Buffalo – is denser than beef but nice if cooked slowly with lots of flavouring
  5. Chicken – has less flavour
  6. Pork – again tends to be less flavoursome.
  7. To buy fish and meat you will need to speak to the people who live in your area. Aundh and Baner have lots of good places. Magarpatta not so much etc.
  8. I cheat with meat and order it from the Hyatt Regency in Viman Nagar – if you go to their coffee shop (middle entrance) then you can order and get within 48 hours – is more expensive than the markets but you don’t have to go to the markets! You can do the same from the Marriott from the Italian restaurant.
  9. Nature’s Basket do a good pork loin.
  10. Fish is good in Shivaji market if you go to stall at the very end at right angles to all the other stalls.
  11. Meat and fish is very much a local knowledge thing so ask those who live around you.

Food Shopping

(as I know it – again speak to people who live near you for more precise locations)

  1. Important to remember that most shops don’t open until 10.30 / 11. Cafes are an exception to this.
  2. Spar (In Koregaon Plaza / Nitesh shopping mall) – best of the supermarkets. People come from all over Pune for it.
  3. Nature’s Basket – one in Koregaon Plaza and one in Aundh
  4. Shivaji Market, Camp
  5. Tulsi Baug Mandir (market) and the market next to it (better than the Mandai market)
  6. L’Bouche D’Or (known as French Bakery!) in Gera Plaza on Boat Club Road – does great bread and yummy cakes, run by a French man!!
  7. Hyatt Regency and JW Marriott Hotel
  8. Mahalaxmi Stores on North Main Road – seems tiny, sells everything and will order things for you if you show them a picture and they can find it! They have a great electronics stores on the 1st floor.
  9. There are lots of shops on the side of the road that sell everything you can imagine! Your driver is a good source of knowledge for this.
  10. Milk – people use a variety of delivery services – Nature’s Basket (just call them), Pride of cows to name just two. Local shops will also see UHT milk.
  11. You can buy fresh milk but usually this needs to be boiled and consumed quickly.

Alcohol

  1. Supermarkets do not sell alcohol except for the international ones but in separate sections.
  2. Look out for Beer Shopee signs next to little shops at the side of the road. Your driver should also be able to bring you to a local shop. Women can definitely go into these shops (really just counters facing the street) but you will probably be the only woman there.
  3. Get the number of a local shop and they can usually deliver within 30 minutes. Cash on delivery.
  4. Watch out for ‘dry days’ these are days where nowhere is allowed to sell alcohol (well not officially! International hotels are sometimes allowed to sell it). Dry days fall on big festivals. Your driver should know when these will be. If there is a calendar of them, I have yet to see it!

Furniture / Household

  1. RA Lifestyle  – Kalyani Nagar
  2. Sanskriti – Koregaon Park
  3. Lifestyle – Bund Garden Road
  4. Vasati – Mundhwa
  5. Inorbit Mall
  6. Ishnaya Mall (furniture place – bit weird but give it a go)
  7. Shoppers Stop – Seasons Mall
  8. Picture framers – Mohsinali’s Frames, Clover Centre on first floor, left hand wing. Top Art – Viman Nagar – framing is so much cheaper here!
  9. Hardware stores – are everywhere ask your driver, they sell almost everything that you could get in a DIY type store. DIY stores you wander around – do not exist!

There are places everywhere they are just a few! Again ask your neighbours and friends.

School / Stationary Supplies

Lots of options these are just three.

  1. AB Chowk – this is a whole street of school book sellers. Here you can get anything you can imagine in terms of stationary. Probably easier places to go but here is cheaper and more fun!
  2. Guarav – art shop in Koregaon Park (Lane D). Is really good but expensive.
  3. Artist Katta – fab art shop really near Shaniwari Wada. Much cheaper than more famous places and they people who run it are amazing!

Side of the Road

  1. Fruit and vegetables. If you aren’t sure about the pricing tell your driver what you paid and they will deal with it, if you have been done!
  2. Shoe repair / polishing – they usual sit on the side of the road, again ask your driver – they sell shoes laces too!
  3. Newspapers (although you can arrange for these to be delivered too – ask your neighbours)
  4. Matches / lighters – sometimes get in supermarkets but can’t guarantee. Again ask your driver.

Brunch

Brunch is a big deal in Pune on Saturdays and Sundays.

  1. Personal favourite – Hyatt Regency
  2. Oakwood Premier – go there during the week for breakfast sometimes – yum!
  3. JW Marriott – really popular – you need to book in advance
  4. Westin – the Italian is great but not for someone gluten free like me!
  5. Conrad hotel – new hotel, brunch is expensive and only OK.

Traditional Indian Food

There are great places everywhere in Pune! These are just a few of my favourites! All veg restaurants.

  1. Ram Krishna opposite the Clover Centre, Camp. Old traditional veg restaurant.
  2. Wada Pav, JJ Gardens (every driver knows this place so famous!) Wada Pav is a yummy deep fried potato patti served in a bun – delicious! You pay 20 rupees per plate at one stall and then hand a token to the place where they serve them. Always manically busy but so, so yummy!
  3. Vaishali, Ferguson College Road, also really famous.
  4. Ganraj near Tulsi Baug – so yummy!
  5. Archana right next to Tulsi Baug Mandir (market) – some of the best food I’ve had in India!
  6. Shiv Sagar – in Baner
  7. Kalyani in Kalyani Nagar
  8. Copper Chimeny -Lane 7, Koregaon Park (will deliver) – doesn’t look traditional
  9. Carnival – Mundhwa (near Marriott Suites) – very contemporary

Forums

Facebook – Pune Expat Forum, Everything Expats, Pune Parents Group – great sources of information and friendship!!

WhatsApp – while not a forum in itself – it is crucial for any communication in Pune. The mobile phone system isn’t exactly reliable so people use this instead. You will find there are lots of groups that share information and friendship although unfortunately you can’t search for them but ask people.

Places to visit

Pune isn’t a major tourist destination but it can be very interesting. Just throw yourself into the city centre. Go in with open eyes and more importantly and open mind.

You will be stared at almost everywhere you go but especially where locals have time to stop and stare. If you go to where they are busy and working, then they will see you and look a little but they don’t have time to want to take pictures of you etc.

Pune is relatively safe, as safe as any big city is. As a woman I have no problems walking around anywhere. If I go somewhere new however I tend to go with a friend largely so we can have an adventure together and having company always makes you braver.

Early days do a Chalowalks.in walking tour of Kasba Peth (an old area in Pune). This gave me the confidence that I could walk around what seems like chaos but isn’t really.  Jan (an Irish woman) and her husband Rashid Ali run the walks. They have lived in Pune for many years.

  1. Kasba Peth – just love to walk around there – really interesting
  2. Tulsi Baug / Laxmi Road – a market area (mainly household and clothes / jewellery) with a separate old Victorian market (fruit and veg)
  3. MG Road / Camp – more expensive than other areas but lots of interesting shops.
  4. Shaniwar wada – old fort in centre of town
  5. Ganesh temple (near Shaniwar wada)
  6. Alandi – about 40 minutes from centre of Pune – a lovely ghat – check out the new temple being built to the left of the ghat – you can’t miss it. Your chance to have a walk around an unfinished temple – they think they have 8 more years of building left!
  7. Pavrati Temple – temple on top of a very steep hill!
  8. Juno Bazaar – only on Wednesday / Saturday mornings – all sorts of things – go for the sights and buy something if you see it. From ornaments to canvas (this is where the military shop) and every single thing you could every imagine in between!
  9. Each area will have a specialism – keep an eye out as you drive around – these areas will provide you with everything you need!

Again, you can find lots of things in the malls but (I hate malls) it is more interesting if you look for them where real Indians actually shop. Ask friends / forums or your driver / maid. It will be harder but more real and cheaper.

What to Bring

Some people will have only air freight and others only a sea shipment – some will have both! I have assumed you have both.

What you will need is also dependent on what your situation is. Will you be in a serviced apartment until your sea shipment comes or will you have rental furniture and be in your apartment?

Some of the things I said in the air freight clearly need to be brought in larger quantities in the sea freight.

Clearly, if you have children then there will be additional items that you will need to prioritise dependent on what you need to bring!

Luggage

  1. Use full alcohol allowance for a spirit (lasts longer) or wine if you don’t drink spirits! Buy for me if you don’t want it!!
  2. Any solvents from home you need but can’t send in air or sea shipment e.g. hair spray etc. Don’t worry about cleaning products or shoe polish!
  3. Medicines – can get most things here but it is about not having to worry for the first couple of weeks.
  4. Small mosquito cream. When you get here buy Odomos creams and Odomos patches for children (although I use them all the time!). It is cheaper and more effective.
  5. Anti-mosquito bite roll on – more effective than cream.
  6. Tampons – you can’t get them here easily! They are available in a very limited selection in Spar but they are the really old-fashioned type that I don’t like but good to remember in an emergency! You can get sanitary towels. I brought hundreds of tampons when I moved – I do wonder what the movers thought!
  7. Enough clothes to do you until your sea shipment arrives. Nowhere is very formal so just bring something nice to wear just in case – everything else can be quite casual.
  8. High heels are not going to be worn unless you are getting out of your car and going straight in somewhere! The footpaths make high heels dangerous!! So bring one or two pairs only. Remember there is no such thing as too glittery here so if you want bring your fanciest pair just in case a sari party or the like happens before your sea shipment gets here!
  9. Sandals – if you have size 7+ feet get a couple of pairs of flip-flops / sandals before you come.  You can get larger sizes just not easily. If you are coming near to monsoon try and have at least one pair of shoes you can get very wet and muddy!
  10. Things to entertain children (and yourself) in the car – you will spend hours in it everyday! My husband invested in sound cancelling headphones for his commute and it is has made it much more restful a journey!
  11. Adaptor plugs (check if your apartment has multinational plugs, many aimed at expats do – especially the more modern ones). Extension leads are also a good idea. Although it isn’t hard to get extension leads that take multinational plugs – they are probably UK prices.
  12. Diarrhoea tablets and Dioralyte sachets. Ibuprofen – can work for diarrhoea!! Can get here but you don’t want to have to worry about such things in your first few weeks!

Sea Freight

  1. Things that will make your house a home are more important than practical things! Pictures, a rug, your favourite ornament, cushions.
  2. Clothes – don’t worry too much – you should be fine with what you brought with you when you arrived. I brought all my work suits in air freight!!!! Why?? No idea! They took up valuable space.
  3. Your luxury items that just makes life more pleasant! Ours was our Nespresso machine and 200 coffee pods!
  4. Plug in cooler box for the car. This will be something you are so grateful you brought! Make sure you bring a cigarette lighter adaptor. It means you can buy meat / veg whenever you want  and don’t have to think about how long it will be in a hot car for! Do not forget!! Even if you think you won’t need it – bring it anyhow!
  5. Fitted sheets (can get but extremely expensive)
  6. Things to make meat tastier – e.g. stock cubes (can’t get beef. Can get others but extremely expensive!), gravy granules, marinating powders (liquids not allowed in your air freight). Dried herbs (can get but expensive). Any non-Indian spices that you use. You can probably get them here but you don’t want to have to worry about them in the first few weeks. Don’t worry about bringing in beef based products – it is no longer illegal and when it was – nobody cared!
  7. Clothes horse (very expensive here)
  8. Iron / ironing board
  9. Dishwasher tablets and dishwasher salt (horrendously expensive if you want a known brand). Indian brands are fine just not as good.
  10. Anti-perspirant for men – cannot get here at all!! Can only get deodorants. Can get one brand of anti-perspirant for women but it is whitening. I don’t mind but if you do, bring loads!
  11. Decent pillows – can get here but expensive.
  12. Tinned tomatoes / kidney beans / butter beans / baked beans etc – can get but about 140 rupees a tin!
  13. Lasagne sheets
  14. Any specialist grains like quinoa or even couscous are very expensive here.
  15. Rock salt (at least I can’t find some!)
  16. Condiments – mayonnaise / ketchup / mustard – can get them just expensive
  17. Tin foil, baking parchment, cling film – can get and cheap but quality isn’t reliable
  18. Resealable plastic boxes – everything needs to be put in resealable boxes once you buy them especially flour. Little insects can be attracted to open containers unless you are very careful. You can buy boxes easily here but not always cheap. You can get them cheaper in the UK.
  19. Resealable bags – quality isn’t great.
  20. Big rubbish bags
  21. Potato masher
  22. Decent floor brush and mop (remember you will have huge floors!!)
  23. Hoover and any bits that will need replacing such as bags.
  24. Steam floor cleaner – floors are so dusty that to clean them with it once a week or so will help hugely!

Sea Shipment

  1. Everything above but in vast quantities!! You should have lots of storage space in your kitchen!
  2. Barbecue (gas cylinders can be difficult to get. Coal you can get but worth bringing lots with you!)
  3. If you drink, use every single litre of your alcohol allowance (if you don’t want to, bring some for me!). Domestic wine isn’t expensive here but isn’t great quality. Imported wine is very expensive. Spirits are more expensive than in the UK.
  4. Salt and pepper cellars (unless you are happy with boring ones)
  5. Herb containers unless happy in just small plastic boxes
  6. Picture hanging strips (you can use nails but they are so much easier!)
  7. DIY equipment – can get but if you have at home, you may as well bring.

Learning Hindi

If possible try and learn Hindi, even just the basics. Don’t be afraid to learn the script, it is easier to get your head around than you think.

Why learn?

  1. It will help you to read some of the signs around town, this will help you work out what each shop does a little easier. There is English but not always on the more local shops.
  2. If you learn the basics of how Hindi works you will be able to understand more why people use the particular Indian syntax that people use while speaking English. This makes what they say more easily understandable!
  3. People will be so surprised and impressed if they see you can speak Hindi – it will make them more inclined to help you out.
  4. Once you can begin to understand a little, you will be able to start working out what people are saying when they are speaking to each other and that will make it less likely that you will be cheated because even if it is just in English you can react to what they say!!
  5. Less educated people will speak little or no English, being able to speak to the fruit stall holder or the cobbler in Hindi makes you less dependent on your driver.
  6. People will really appreciate that you have gone to the trouble of trying to learn their language. You will seriously impress them! I now have conversations with people that I wouldn’t have been able to if I hadn’t learnt Hindi – what a great way to learn more about this country and its people!
  7. Learning languages is great and what a skill to leave with at the end of your assignment!

The difficulty in learning Hindi is that people don’t expect you to speak it so either just reply in English or go into panic mode and are unable to understand you! You therefore have to try and find excuses to speak the language in order to improve.

Finally

I have not been in India forever, there are probably lots of things in this document that long-termers (5 years plus) would disagree with it and there is probably lots of advice that they would give you that I haven’t! On the other hand, I started to put this together while I was still new enough to remember what challenged me and what excited me when I first got here.

You will undoubtably come across experiences that I haven’t referred to here and you may well think – ‘what did she know?! If only she had told me about this!’ That, however, is the great thing about living abroad – there are so many things that challenge us all individually and that are unique to our own needs and character that it is next to impossible to cover everything in one short document.

The final words of this document were written in a floating cottage by the sea in Kerala after a week spent on a houseboat and in the mountains. All the hard challenges about living in India to me are worth it when you can so easily experience what in your home country are probably impossible or prohibitively expensive. The time will come when I return to the UK and will never have such an extended adventure again. When this time comes, I know I will have a wealth of experiences to take with me and to remember but also my experiences will have made me a more rounded and more open person.

Final ‘final word’ – try and ‘surrender yourself to India’ as Karla in the brilliant book, Shantaram, a must read, said! Don’t try and change it and don’t try and fight it. Just accept what it is as best as you can and relax into it. Easier said than done but it does make a world of difference.

What have I left out? Please leave a comment and I will include it!

Do you have questions that you hope I can answer? Leave a comment and I’ll try!

Also do email me at kironside78@gmail.com if you would prefer a more personal response to your questions. 

The Wanton Women of Indian

Normally, my blogs are filled with inspiring pictures from my travels or that I believe represent my opinions. Today, however, I don’t want to. I just want the words to do the talking. After a year in India, I am angry and for me only words can express this feeling. 

A woman in India must be protected. She must be protected both from her low intellect and therefore her questionable morals that her inability to think results in and she must be protected from man that cannot be expected to corral his own behaviour when faced by the licentiousness of a woman’s easy virtue.

Foreign women visiting India were recently advised not to wear skirts. That this was un-Indian and didn’t represent the high ideals of Indian morals. That as a consequence of foreign women’s low moral standards in terms of dress that Indian men could not be held responsible for their actions. The very sight of a foreign leg having the ability to drive a man to such distraction that a woman would effectively be bringing on her own rape.

A women faced with verbal or physical abuse on the street, should not look to those around her for support. For if she gets it, it is only to be expected that the abuser would rally his ‘boys’ and attack the very person who was trying to protect the victim of their behaviour. Fear of retaliation then stops many who do genuinely object to such behaviour from standing up and defending a woman when she is in a vulnerable position. While the man’s ‘boys’ rather than turning on their friend for verbally or physically abusing a woman, instead choose to defend her.

Men seldomly look at me other than to stare. There is never eye contact or recognition of my existence. My husband is always deferred to even amongst those I consider educated. Any decisions are always for my husband to make not I. This is not politeness but rather with my husband I do not exist. Therefore I either don’t exist or I am an object that can be stared at no matter who intimidating this is.

I recently booked two flights to Goa for my husband and I. I was the primary traveller on the reservation. I still travel on my maiden name: Donaldson. After making the reservation I immediately received a text message thanking Mr Ironside for having made the reservation. Closer to the date of travel Mr Ironside also was reminded of his flight. I did not exist. All correspondence was in his name.

My maid’s sister recently had a baby. As the elder sister, the sister left her husband and moved in with her. When she became sick after giving birth, it was my maid who had to stay overnight in the hospital despite her holding down two jobs. When my maid’s dad became sick in the south of India, instead of leaving immediately to see him, she had to stay – the baby’s father was not responsible for looking after the baby and the mother was not well enough to do it alone.  Her other sister lives below her and her husband refused to allow her to help look after the baby and shouted at her that she wasn’t spending enough time at home cooking and cleaning for him.

Mind you, this comes from a man who rejected his wife’s daughter. A daughter who now lives upstairs with my maid and for whom no financial support is provided. A daughter whose birth father rejected her on birth and refused to allow the baby girl to stay in his house. Hence why my maid took her in. He eventually left his wife but she still went on to remarry a man who refused to recognise her daughter’s existence.

The Indian government is in the process of introducing revolutionary new maternity leave and child care provision. Indian women will go from being allowed 12 weeks maternity leave to 26. All companies with more than 50 employees will have to have a creche that the mother will be allowed to visit 4 times a day. This is to be applauded.

Paternity leave is being debated although the resounding political opinion is that this is not fair on the wife. The husband will just see it as a holiday and it will just increase the wife’s workload when she already as a newborn baby. Once again instead of making a man responsible for supporting his wife more than financially, it is being officially recognised that it isn’t a man’s job to bond with his child. While this may be culturally the case, the government instead of fighting it will instead prevent those modern Indian men desperate to help out at home and bond with their child from doing the very thing that surely is a human right.

Most charities operating in India focus on women and empowering women, finding them a way to increase their incomes. Why? On average every rupee extra a women makes will go to her house, her children. It is widely recognised that on average every rupee extra a man makes will go on himself – on drinking, on cigarettes, a new phone and not where it is needed. If you want to educate a chid, you first educate the mother and not the father.

A BBC documentary about the rape of Nirbhaya on a bus in Delhi in December 2012 that didn’t hold back in its criticism of the authorities and the general approach to rape politics / culture in India has been banned in India. Better to ban a controversial topic than provide yet another means of highlighting something that no one is comfortable with.

I, a strong independent woman who refuses to take any nonsense from anyone- good luck to them if they should try, find on a daily basis my rights as a human being being infringed. On a daily basis, India tries to reinforce with me that I am worth less than my husband and indeed worth less than men in general, including those who rape. Faced with this on a daily basis by someone without the education and life experience to know that it is wrong, to try and fight it requires a bravery that many Indian women just cannot afford to have. Their very survival depends upon them not recognising how they are being treated and if they do, not standing up and fighting for their rights.

India proports to be a global leader. One that has managed to balance the needs of modern capitalism with defending the rights of the family. Yet it is one that fails to recognise the power of women in society. It is one that continually degradates a women and reduces them to little more than a feeble being incapable of their own management or hypocritically a wanton being who can bring a man to such lust that he cannot be responsible for his actions.

As a side note, this blog is sedition. Any criticism of India of any description is illegal. Questioning the status quo and the Indian government’s role in the current situation is not allowed. I could be arrested and sentence to10 years plus in prison for this. I personally call it the United Nations Humanitarian Right to Freedom of Speech.

I Don’t Think I’m Ready But Perhaps I Should Anyhow

This blog was first written about 18 months ago. I was too embarrassed to post it – too embarrassed to admit I wasn’t strong enough to cope. Since then, I regularly come across it, read it and instead of thinking why was I such an idiot about the whole thing? Why was I too embarrassed to post it? I continue to feel embarrassed – its ridiculous! 

So I have decided to be brave and post this blog. It is well out of date but I don’t think it matters. Perhaps somebody who is having a similar psychological fight as I had will read it and feel that they are not alone. Maybe they will see the ridiculousness in not talking about it and actually speak to somebody! 

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I’m doing something that only one person vaguely knows about – at least they are slightly aware of its existence but they don’t actually know I have started to use it. Not even my husband knows about its existence, never mind the fact that I actually have started to use it. This goes against everything that I have tried to maintain since I first got ill. Since I first got ill, I have always said that being open about what was going on, in particular with my husband, was absolutely key. Not being open might lead to distrust and misunderstandings. I have always argued that it was wrong to do anything that might encourage that feeling.

So what am I doing that is so awful I can’t even tell my husband? What is it that I am feeling so unsure of, perhaps even so stupid for doing it that I can’t tell my husband? I do not understand what makes me feel so embarrassed, I do not understand why I don’t want to share what I am doing with anyone. So what am I doing?

While we were on holidays and I had a relapse, one day we walked back from the restaurant and I clung to my husband’s arm, desperate for his support and to help me balance. It dawned on me that day that if I could find something that would help me maintain my energy levels and support me when I was having a bad day, then that surely would be a good thing.

So what have I invested in? I have invested in a walking stick.

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And look just how fun it is! And its my favourite colour!

The fact that it took me three paragraphs to get to the point says it all. I am not sure I am ready to use a walking stick, walking sticks are for old people or invalids – I am not old and I do not feel like an invalid therefore surely that means I do not need one. I am embarrassed at the thought of using it and I am embarrassed at the thought of being seen with it. Does using one mean I have given in – once again – to this illness?

You could, very rightly, argue that if I am using it to walk further on a bad day then it is assisting me in doing more than I should. If I could exercise myself better then yes, using it on a bad day would surely little by little assist me in improving my health. I cannot however exercise myself better so surely anything that enables me to do more is just increasing the intensity of my exercise? I think I am just looking for excuses as to why I shouldn’t use it, rather than looking for justifiable reasons why I should.

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True for so much of my illness, definitely not true in this case. Being too embarrassed to discuss my need for a walking stick preventing me using it. This was not me being strong but me being a coward. 

It has only been used twice, having owned it for more than a week I bought a folding one so I could have it in my bag to use should I be out and suddenly get an unexpected collapse of energy. I have   carried it around for a week every time I went out to use in just those circumstances. On Saturday when we walked across a field to get to a nuclear bunker (don’t ask), I was finding the surface hard going and thought just how much my walking stick might help me. There it was just waiting for me in my bag on my back. We were with friends however and I was embarrassed. Embarrassed because my husband had no idea I had it and embarrassed because then my friends might look at me as sick girl. I seriously overdid it on Saturday and as a consequence paid the price on Sunday.

20140318-080008.jpgIf I had used my walking stick for the entire duration of our outing, would I have overdone it so much? Would it have enabled me to use less energy by providing me with support, balance and indeed a method of propulsion. Perhaps, but I was too scared and embarrassed to try it.

This got me thinking. If I was able to reduce my energy requirements on an everyday basis by use of my walking stick, would this enable me to live more of a life? Walk further, do more? Would this be a good thing? Would this just encourage me to do more than I should? However, if I am using the same amount of energy but using it to do more surely that is a good thing? Again am I just looking for reasons to justify not using it and looking for reasons to prove my justification is ever so wrong. Perhaps the latter but I really do not know.

On Monday, still not quite having recovered from my overdoing it on Saturday, I went for a walk. A walk that included my walking stick. I deliberately kept to the back roads embarrassed by my stick. Ashamed to be seen out with it. At least this was my initial feeling. My walk to my usual churchyard seat took no longer than 6 minutes.  By the time I arrived, I was beginning to get the feeling that it was helping me. I should have been more tired by the walk given my energy levels. My legs should have begun to feel more pain but they were no worse than when I left. Was this the benefit of the walking stick or was it simply that I had under-estimated my energy levels and over-estimated my pain levels?

On my return, I walked back a different route, a route that touched the sides of busy roads, a road where there were pedestrians: people to see me and possibly make comments and wonder why a girl in her mid 30s was using a walking stick. I was very aware of everyone who passed, straining to hear them comment amongst themselves about me. Perhaps I was lucky or perhaps people just didn’t notice or care but I did not hear what I strained for. Silence.

Today Tuesday, the next day, I have tried again. This time walking further than yesterday. Again I didn’t struggle or feel my energy diminishing too quickly. This time I was aware as I crossed rocky ground that it was given me support and helping me balance. With my walking stick it was easier than it would have been without!

20140429-094815.jpgI am still a walking stick virgin however. I still hold it wrong at times and have to adjust it. I dropped it crossing the road until I remember to twist its string around my wrist so it wouldn’t fall. At times I don’t quite get the propulsion right and it lands on the ground at an odd angle. I haven’t learnt how to balance it when I sit down. I also haven’t learnt how to accept that it might be useful to me.

 

How can a walking stick be useful to a girl in her mid 30s who can walk for just over a mile (with a break half way)? How can a walking stick be useful to a girl in her mid 30s who doesn’t walk with a limp or need to balance against things? That is unless I am having a bad day.

For me using a walking stick is still a big experiment. Will I continue to use it? I don’t know – I hope I will if it consistently helps me. Will I tell my husband? I guess I have to. What will he think? I don’t know but I know he will at least wear a mask of support. I think he will think that if I am finding it useful then it is a great thing to do. I wonder whether he will find it embarrassing to be seen with me? Could I blame him if he didn’t? Hardly, I am not exactly embarrassment free at all of this, now am I?

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Gillian above (with her own walking stick) – my inspiration while I was sick and a never-ending source of support. She would have given me a right telling off if she had known I had a stick and wasn’t using it!

My friend, Gillian, was the first and only person I have ever discussed using a walking stick with. She uses one herself and even offered to lend me one of hers to try it out. I was embarrassed by the conversation – I think perhaps by the very need to have it in the first place. She was supportive and encouraging. She too was young and understood what it felt like to start to use one – she had started to use hers at 18! Her encouragement enabled me to at least buy one. I would like to think that one day I will be as brave as her and see only the positive reasons for using a walking stick. The negative reasons are surely just a matter of perception.

So I did eventually tell my husband who completely unsurprisingly was utterly supportive of me! 

I didn’t use it all the time but I always had it on me ready to pull out when things got difficult and I used it all day on a bad day. A walking stick categorically helped me! A month or so after I started to use it, I was re-diagnosed and given treatment that enabled me to make rapid improvement – very quickly after this the walking stick was no longer required. 

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In hindsight, I can only wonder why I made such a big deal about using one! Nobody looked at me funny, nobody laughed and in truth I don’t think any strangers actually cared. I should have used the inspiration of Gillian more – she is a girl who just gets on with things and doesn’t allow fear or worry stop her. Perhaps although I am now living in India and while not healthy, a lot healthier, this blog should act as a reminder that sometimes to be strong you need to accept your weaknesses and not let them hold you back.

Unbridled Expectations

One cannot understand anything unless one is determined and indeed wants to understand. It is easy to put on the blinkers and only look in the one direction you want to. For months that one direction was denial. Denial that I was ill, denial that I had to accept the limitations that this illness put on both my body and life.

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There were times when I eased the blinkers off slightly, looked around in fragile acceptance before quickly jamming them back on and once again refusing to look in any direction other than that where it appeared I was in full health.

Over time the clasps on the blinkers aged and all it took was a gentle knock before they fell away revealing my true situation. I was very ill and I had to accept all the limitations this illness placed on me or I would never get better. Refusing / being unable to accept this for so long had had a detrimental impact on my health. Being able to accept this enabled me to stabilise and then to begin to make very slow progress.

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As regular readers will know, early September I was rediagnosed and given a new treatment plan all connected to breathing correctly. The change in my health was exceedingly rapid. The true joy came not in my improving health but the corresponding improvement in my lifestyle. No longer did i have to seriously limit time spent with friends, no longer could I only walk down the road and back, no longer did I experience the debilitating pain I had dealt with for 9 months. Once again I felt free and invincible.

Invincibility however does not prevent the acquisition of new blinkers, stronger ones that won’t age and fall away so easily. Where previously the blinkers had prevented me from seeing just how ill I was, these new blinkers prevented me from realising that I am not super woman: there is a limit to what I am able to achieve.

I was so determined to relish my new-found freedom that I forgot the basic fact that I had been / was very ill. It is no surprise therefore after a few weeks of going to the gym every day, socialising with friends and finally towards the end returning to work that I began to see some of my progress slip away from me. I am still a million times better than I was even 3 months ago but I am not as well as I was a month ago.

My husband said he feels like it is back at the very early stages of my illness where I had no clue how to handle it. Where I was still blindly believing that I could exercise myself to good health, that staying out with friends for too long was okay because being social was more important.

This time however it took us both some time to realise that I was messing up. How could I be getting it so wrong when for so many months I had so carefully and so effectively managed my illness? How was it possible that the lessons I had learnt from that time could be forgotten so easily?

The answer is painful but relatively easy. I allowed myself to believe nay told myself I was no longer ill. While I still believe it is likely that I am no longer ill, I now realise that the process of recuperation doesn’t happen over night. The person who is declared cancer free is not one day ill and the next day totally fine. The person who is declared cancer free has many months of recuperation in front of them. With no one to direct me however I didn’t even consider this reality. I felt fine so surely that meant I was fine!

It is now I think about all those naysayers who read my blog and then warned me that by increasing my activity level I was inevitably going to make myself bedbound for life. That trying to do more was simply wrong. I think about them now not because I totally agree with them but rather if I soften their warnings a little – they are right. I have no doubt that unless I continue to carefully manage what I do, I will end up continuing to go backwards until I eventually reach the level I was six months ago or god forbid worse. Exercise and activity is not bad – in fact it is crucial to my continuing health. Unbridled expectations however are exceedingly dangerous, far too dangerous to dare go near.

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Once again I wish there was this magic person who could look at my life – how much work I have to do, how much exercise I want to do, how much socialising I want to do and how much down time I need and help me pace myself. However, given this person didn’t exist when I was desperately ill and floundering wildly, I very much doubt this person exists for me now. So I have put my husband, my family, my boss and all my friends on Karenwatch. Their job: spot when they think I am overdoing it and order me (not advise me) to stop, reduce what I am doing – think about it a bit more.

What Will Happen to Me? Living Life

For the more observant amongst you, you may have noticed that my blog title has changed. It is just subtle but it represents a fundamental change in my life. No longer does it feel appropriate to host a blog entitled, ‘What Will Happen to M.E.?‘ but rather it is now the slightly more appropriate title, ‘What Will Happen to Me?‘ The subtle omission of those two simple dots may pass by unnoticed by some but for me they’re deletion is a cause of great celebration.

In two weeks time, my husband and I will go to spend another weekend with his family: celebrating his father’s birthday. 12 months ago, this very birthday weekend marked the very beginning of my illness. An illness that was to throw myself, my husband and my family into a brand new and unexpected world of uncertainty, pain and fear. The gradual and then sudden disappearance of this world over the last few months is still a source of amazement and at times shock.

Where previously my blog title represented a sense of confusion over my future – a sense of loss, my new title represents an awareness that I am now in a position to do whatever I want. I have no idea what is going to happen now. I have no idea where I will end up living; what I will end up doing.

What drove me in the past, for the moment at least, no longer drives me. I no longer care if I become a headteacher, I no longer care if we live in a fabulous house, I no longer care about my husband’s career progressing as quickly as possible.

Without being melodramatic, in the last year I faced being bed-bound or at best housebound for the rest of my life. It is only by a combination of a miracle and my determination that I no longer face this. However, if I was to face this again, would I care that I’d become a headteacher if it meant that myself and my husband hadn’t spent much time together so that I could do the job? If I was to face this again, would I care that my husband had a brilliant career and earned lots of money if I knew it had made him miserable?

I have been returning to work on Monday afternoons for the last few weeks for staff training. Last week, we had training in a program called, Shut Up and Move On (SUMO). This program is all about how to be logical and balanced in your emotional reactions to events. One thing that was said that I felt clearly reverberated with me was that most of us live our lives on auto-pilot.

Day to day, week to week and year to year we live our lives without thought. We rarely stop and consider what we are doing, why we are doing it and whether we really want to do it. Prior to my illness, I would probably have denied that I lived my life in such a way. A year in which I stepped off the treadmill of life however has allowed me to reflect on the reality of what I was doing, why I was doing it and whether I really wanted to do it.

This year has allowed me to realise that I was living my life on auto-pilot: that much of my dreams and aspirations were ill-thought out or not thought out at all. Some of the things I did previously reflected perhaps a high-moral point of view – it was acceptable, for example, for me to work more than twice the hours (32.5) I was paid for a week because it meant the students got a better education in a better more secure environment. While the moral value of this, i.e. the desire to put others before yourself is incredibly admirable – is it still acceptable? Is the value of what I gave students by working more than twice what I was paid to, worth the fact that it was having a negative impact on my own life?

I recently heard a teacher talk about the self-sacrifice being worth it for the benefit of our students. It made me want to scream. While I have no intention to become self-centred and inflexible, the idea that your life and your health is worth so much less than that of your students is not an acceptable way to live. If nothing else, my self-sacrifice contributed to 300 plus students over the last year not having an English Department that supported them as it should have.

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My life and that of my life with my husband, family and  friends  is incredibly important. Consequently, this life must come first. I am proud of what I have achieved in my professional career so far and I am sure that I will be proud of what I will achieve in the future. I am not however prepared to put my career ahead of myself, ahead of my husband and ahead of my family anymore.

This illness and my recovery (which I’m incredibly grateful for and amazed by) has released me to live my life no longer on auto-pilot. It has given me the freedom to do anything I want. It has also given me the freedom to enjoy the little things in life. The little things that make your life more rounded and whole and that are ultimately significantly more important than what we normally consider to be of more value: educational achievement; career; money; things; house.

Yesterday, my husband and I went for a 2.5 mile walk through the New Forest. A walk I have done a million times. Yet, this was the first time in a year I had been able to do it. I suspect unless you have been ill or have had your future or your ability to do even simple things put in question, you will not be able to understand the simple joy doing such an ordinary thing as going for a walk gives you.

I do not think such achievements as walking or climbing up a hill or reading your book for an hour or socialising with friends all afternoon are new joys. I don’t think they have gone from something of limited significance to now being hugely important. What has changed however is that I can now recognise that they are achievements and recognise they bring me joy.

If these little things can give me a sense of achievement and joy, then there is only one other question. What else is there out there that I have yet to do that can bring me equal if not even more joy or an equal if not even greater sense of achievement?

I was never somebody who was afraid of a challenge, I was never afraid of change but I have learnt that I am stronger and I am braver than I thought and that I can do anything I want. To not, therefore, go out and try and do new things and face new challenges seems an incredible waste of a life.

So last weekend, I went cavern trampolining in a slate cavern twice the height of St Paul’s Cathedral. It scared me so much, my legs shook and for much of it I clung to the net terrified but I achieved all I set out to achieve. I ran several times across the trampolines, I climbed up a scary ramp that required both emotional and physical strength, I went down a slide that scared me. Every time I was scared, I repeated to myself, ‘I can do it, I can do it.‘ Why? Because I could, I got through last year, I can get through anything.

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Every where I look I seem to see challenges just begging me to do them. I have never climbed Mount Snowden so why not? I have never been on the longest zip wire in Europe so why not? I have never driven across Australia so why not? Part of the SUMO concept is to ask yourself several questions so that you can put your fears in perspective. One question is on a scale of 1 – 10 where 10 means certain death how bad is it or could it be? For the three challenges above perhaps a 1 or 2. Although a venomous snake may climb into your car in Australia which may well mean a 10 but seriously what are the chances of that?

While I have yet to learn whether this illness will have left behind any permanent physical limitations on my life (certainly I wasn’t quite physically ready for the intense aerobic nature of the trampolining), I do know that I will always do my best not to emotionally or practically limit my life and how I live it.

The reality of adopting such an approach to life does mean that I cannot predict where we will end up living, what we will end up doing and whether or not I shall stay in education. The other reality is, ‘I can do it‘, I am brave and I am strong. There is nothing I cannot achieve.

The even more observant amongst you will have noticed my blog subtitle has also changed. This required some thinking. How did I reflect what is in my blog prior to my illness, what is in it now and what I hope will be in it in the future? I settled on, ‘Living Life‘. For this is exactly what I intend to do. I intend to live my life not just experience it as a by-stander. So I do not have the answer to the question, ‘What Will Happen to Me?‘ but isn’t that exciting?

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Breathing New Life into an Old Dog

This, I am afraid, is a long one!

It is easy to be tempted to jump at every solution or diagnosis doctors or patients throw at you when you are very ill. However, it is also just as easy to assume that whatever diagnosis or solution thrown at you is wrong.

As those who regularly read my blog know, just under a month ago I received a re-diagnosis from M.E. to Dysfunctional Breathing Syndrome with secondary Fibromyalgia. When I released this information to the world, it was met with a mix of hope without fear of potential disappointment and dire warnings of the dangers of believing a word of what the doctor had told me. Some were absolutely sure that this meant that very shortly I would be 100% well. The other side thoroughly believed that the treatment I would now receive was going to doom me to rapidly worsening ill-health if not permanent disability.

I had to find myself somewhere in the middle. Not willing to accept that this now meant there was hope of 100% recovery but equally not willing to believe that a specialist with many years of experience could be completely wrong. Over the last month, I have wafted from total belief in my recovery to total disbelief. Now, I believe I find myself in the sweet spot: determined to do what I can to improve my health but keeping a wary eye out for danger signs that might lead to the doomsday scenario suggested by some of my readers. Accepting this opens you to both hope and disappointment, often at the same time.

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After my last blog, I was contacted by somebody from Phoenix Rising – a respected M.E. forum and advocator for M.E. patients’ rights. They asked me if I would continue to blog my experiences, as patients needed to know whether there were other potential treatment options out there and what might happen if they too traversed my current road. There is no question in my mind of the importance of doing this.

When I was very ill, the very lack of positive stories: the stories of those that had made significant steps towards recovery or even complete recovery, made it very hard to keep a grasp on hope. Those who blog or post on forums tend to be those who are still very ill, many of whom will have been ill for decades.

Those who recover understandably tend to move on and do not leave behind the story of how they got there. While my story may not be a story of total recovery (yet), at the very least it is now a story about how improved health can happen quickly under the right circumstances. I plan to continue blogging into what I now hope will be full health and indeed beyond. I hope I can find a way to provide just a little bit of hope to those that might need it.

My health has improved significantly over the last number of weeks. It has improved at a rate that has surprised and shocked me. The changes have been incredible.

My parents, husband and many others have told me how my voice has changed, that I’m beginning to sound like the old bubbly Karen they once knew. I can hear that in myself. I can feel that less energy is needed simply for the process of conversing with somebody.

A day tires me out but rarely does it fatigue me. Until I became ill, I would never have been able to define the difference between fatigue and tiredness. The difference is stark. Tiredness can be dealt with by sleep, fatigue remains largely unaffected by sleep, no matter how many hours you lie there.

I have discovered a new problem – although I must still pace and rest regularly, my day is now so filled with walking, yoga, swimming, driving and socialising that I struggle to find time to do the things that filled my day when I was just too ill to leave the house. Things I learnt to enjoy – writing being a primary example. While previously I would spend at least 2 hours a day writing, now I struggle to fit in more than that a week. It is regularly planned into my day but just as regularly is planned out by an unexpected request from a friend to meet for lunch or the fact that it is a sunny day and I want to do a little gardening. My life is now fuller, while not yet normal certainly on the road to normality.

So how has all this come about? In reality, I am not 100% sure. Perhaps, this would have happened anyhow without re-diagnosis. Perhaps, re-diagnosis has given me the freedom to allow myself to get better. Perhaps, it is that I actually do have a breathing issue and dealing with it is helping. I do not know. Although knowing me, I think I can be certain that it is not that I now feel free to get better.

As soon as I returned home from the Rheumatologist I started to research a) what Dysfunctional Breathing Syndrome was and b) how did I start to do something about it. Becoming aware of how a normal person breathes and how many rough breaths per minute they should take, made me more aware of how I was not breathing correctly and how I was breathing far too often a minute.

Since then I regularly stop myself, assess how I am breathing and if I am not doing it correctly – correct it. Practice again breathing properly for a minute or two then get back to my life. Even prior to my first appointment with a physio about ten days after re-diagnosis, I began to feel more energetic, more clear headed. Again, was that purely psychosomatic? Possibly, but I am beginning to reach the conclusion that it was not.

I am not a doctor or even somebody with a medical background, please forgive therefore the very layman understanding of what is going on with my health. Some of the precise details below may be somewhat inaccurate but the overall meaning should be right. 

Not as often as previously but still at times, I find myself upper chest breathing. These are very shallow breaths that don’t involve the use of your intercostal-diaphramatic muscles.

Click on the link to see how I should be breathing!

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This means that my lungs were rarely if ever filled correctly. In order therefore to get enough oxygen, I had to breathe more often to compensate for the low level of air I inhaled each time.

This however still meant that my body didn’t have enough time to utilise the carbon dioxide in my breath in order to transfer oxygen to my haemoglobin. This therefore carried the problem around my body in my bloodstream: messing up the chemical levels in my body and causing too little of one chemical and too much (such as lactic acid) of another. All told therefore some if not all of my symptoms may to a greater or lesser degree be affected by my shallow upper chest breathing.

The instant benefit of a re-diagnosis was that Dysfunctional Breathing Syndrome is covered by our private medical insurance while M.E. (because it is chronic) is not. This meant that referrals came fast. Where my first NHS physiotherapy appointment is scheduled for October 15th, I have already had 5 physio appointments privately. Additionally, I have also seen a chest specialist – who also diagnosed Dysfunctional Breathing Syndrome although he refused to rule out the possibility that M.E. may also be playing its own role in my ill-health. Interestingly, he used to be an M.E. specialist.

The first thing I have had to learn to do is count my breathing. Try saying Bombay Sapphire Gin (my favourite type of gin for those looking for presents for me). Inhale for Bom-bay, exhale for Sapph-i-re, rest for Gin. i.e. count two seconds for inhalation, three seconds for exhalation and briefly relax my stomach before inhaling again. I was told when I was actively practicing this technique, to lie down flat with my head supported and place one hand on my upper chest (above the breast bone) and the other just below the breast bone. I need to practice feeling my lower hand raise as my chest expands on inhalation and while there will still be movement, the upper hand should not move as much. If it moves more, than I am upper chest inhaling.

Initially, practicing this made me realise that instinctively I was moving my stomach in for inhalation and out for exhalation. Clearly, ridiculous. How can I expand my lungs if I was actively reducing their space for expansion? Equally, how could I expel enough air from my lungs if I was actively expanding my stomach and therefore not using my diaphragm? The diaphragm being the balloon like muscle under your stomach that pushes the air out of your lungs during exhalation by reducing the space your lungs can occupy.

Diaphragm:

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Also, I wasn’t using my intercostal muscles (the muscles that help your chest to expand and contract. This therefore made it even harder to get enough air into my lungs and further to expel the air properly.

By concentrating on trying, in simple terms, to use the whole of my chest (especially the lower chest) to breath allowed me to inhale more air and importantly give the oxygen and carbon dioxide enough time to do what they needed to do before I expel the waste carbon dioxide.

So now, I find myself during as many TV adverts as I can, practicing my breathing. If you could hear my mind as I walk down the street, you would hear, ‘Bom-bay Sapph-i-re Gin, Bom-bay Sapph-i-re Gin’ on constant repeat.

Numerically, the consequence of being so very aware of my breathing has slowed my breathing down. As soon as you try, of course, to count how many breaths per minute you take you subconsciously breathe either faster or slower. However, bearing this in mind, the day I was diagnosed with Dysfunctional Breathing Syndrome I tested myself and found my rate about 25 breathes per minute – today 13. Pretty much normal. This is perhaps not the most accurate way of testing my breathing rate but for a home method it will have to do.

There is no question therefore in my mind, whether or not I really have this Dysfunctional Breathing Syndrome, that actively trying to breathe in a better and slower way must have improved my health. Whether it will provide a long-term cure is yet to be seen.

A friend of mine who is a long-time recovered alcoholic made this analogy for me. Stopping drinking does not solve the problems that caused you to drink in the first place. It does however provide you with the opportunity once the symptoms caused by drinking are reduced, to try and deal with the initial reasons that caused you to drink in the first place.

You won’t be able to deal with these causes all at once but step by step you can deal with the most important ones. That doesn’t mean you will ever deal with all your issues completely but it does at least alleviate the worst of them. Continuing not to drink however is one of the only ways you can stop yourself from exacerbating these symptoms again.

I see the same with me. Breathing badly whether it is an illness by itself or just a symptom was making my health worse. If breathing correctly allows me to reduce if not eliminate some of my symptoms, then it simply makes it easier to deal with the remaining now more isolated symptoms. If, however, I forget to breathe properly again, then this will inevitably bring back some if not all of my symptoms. awkward-breathing-funny-moment-Favim.com-1741341

There may be several reasons why I experience fatigue and several reasons why I feel pain and stiffness but if breathing properly reduces or eliminates some or all of these, then that allows me to get more out of life. To do more without risking damaging my health. To begin to start to get fit and recognise that there is a difference between the ‘M.E.’ lactic acid ache of muscles and the ‘I’m using muscles I haven’t used for a long time’ lactic acid ache.

So today, I look at my achievements of the week and I’m very grateful for and proud of all I have achieved. I have learnt to know my body over the last year and I know that I have not damaged my body further by becoming more active. This week I have: swam 30 lengths of a 50 metre pool; I have driven for 1 hour and 40 minutes; I have walked 9.2 miles; I have done full body stretches everyday holding each stretch for 19 seconds; and I have done 90 minutes of yoga. In March (6 months ago) an average week consisted of walking only 2.25 miles with no yoga, no swimming, no driving and no stretching. Out of the last seven days I have socialised with friends 6 times, each time for at least 2 hours. The days back in March where I had to rest all day and go to bed immediately on return just so I could spend 40 minutes with friends seem a long time ago.

It is clear therefore that over the last month I have seen my activity and my health improve by at least 20% if not 30%. If it is coincidental then so be it; if it is psychosomatic so be it; if it is because my breathing is better so be it. I’m not sure what has caused this improvement in my health but I will continue to do what I currently am because something is working and to use the old saying, ‘if it ain’t broke, don’t fix it.’

 

Thank you to everyone who has read my blog. Today’s blog sees What Will Happen to M.E.? reach 10,000 views from almost 80 different countries. Amazing. 

Doctor, Where Art Thou?

I started my last blog with the following lines:

It had seemed for some time now that I had been abandoned by all and sundry from the medical profession. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality. 

I had felt that there was nobody left out there to help me. That even if there was, my access to them would now be restricted by medical professionals who no longer saw a reason to help and support me. 

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For a long time my doctor was very supportive of me, happy to listen to my concerns and make any necessary referrals. That time however, it seemed, had passed. My physiotherapist, not able to do traditional physio with me as he didn’t think my body could cope with it – had said goodbye. I had already done the job of both the Occupational Therapist and the Clinical Psychologist by quickly developing a good understanding of my illness and how to cope both practically, physically and emotionally. 

It had begun to seem to me that if I had somehow been a less perfect patient, then they may indeed have seen a role for me in their lives. They could teach me how to get better. When that opportunity disappeared, there was no longer a role for me with them. 

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It is quite frightening, frustrating, aggravating and infuriating now to think that without my best friend’s friend, I could have remained ill for a very long time if not the rest of my life. Let us assume that the diagnosis my Rheumatologist made (that was referred to in my last blog) is the correct diagnosis. I have Dysfunctional Breathing Syndrome with secondary Fibromyalgia and not M.E. Yes, there is some concern over whether this is actually a correct diagnosis but for the moment let’s just assume it is. Assuming that it is, if it wasn’t for my best friend’s friend, this diagnosis would never have been made. 

The reaching of this diagnosis had little if anything to actually do with my GP or indeed any of the primary medical professionals associated with my case. From the beginning, my doctor had seemed incapable of pointing me in the right direction for further medical support. All referrals made were based on my request, based on my own research. 

My best friend, Sarah, has been very close friends from childhood with a wonderful nurse called Helen. Sarah, upon reading one of my blogs many months ago, discussed my case with Helen. Helen works for a pain clinic in London. Helen advised Sarah, to advise me to try and get a pain clinic appointment. She said she had seen many M.E. patients and it sounded like my symptoms fitted right in with what herself and the consultants she works with come across regularly. 

On being referred to an M.E. specialist (he turned out to be an Infectious Disease specialist) who wanted little to do with me, I managed to convince him to at least include in his letter to my doctor that a referral to a pain clinic might be beneficial. He refused however to make the referral himself. 

Luckily, my doctor upon receiving the letter did not object to the referral. I have previously written about how great the Pain Consultant, Dr Antrebus from Warwick Hospital was. He was the first medical professional to actively listen to my story and offer me genuine advice. He also referred me to the Rheumatologist though with no conviction that he would do anything other than confirm his diagnosis of M.E. 

Again, let us imagine that the Rheumatologist is correct in his diagnosis of Dysfunctional Breathing Syndrome with secondary Fibromyalgia. Imagine therefore that Sarah did not meet with Helen soon after reading my blog or imagine that they did meet soon after but they had more important things to talk about. What might have happened to me?

All the medical professionals in my life had given up on me, wanting no more to do with me.  I am left only with the shocking realisation that assuming this new diagnosis is correct, I may never have gotten better because the medical profession no longer knew or cared enough to keep trying to support me and look for new treatments. 

Perhaps this is understandable given they are guided by the NICE (National Institute for Clinical Excellence) guidelines. M.E. guidelines, that modern research have proven to be on the whole inaccurate if not downright dangerous. If NICE however are refusing to revisit the guidelines for at least a further ten years, why should GPs and specialists think outside of the box when looking to treat a patient with an utterly life changing illness? It is perhaps understandable then that faced with a patient with an illness they rarely come across, they wouldn’t want to do extra research to ensure that their diagnosis and treatment suggestions were correct. Perhaps they feel there is no need to ensure that their diagnosis is correct and that there are no further underlying conditions. 

To think that the very symptom that makes my Rheumatologist thinks more than anything else that I have this new diagnosis: my breathing –  is the very symptom that my GP falsely insisted for the last 10 months was a panic attack. It frustrated me greatly that no matter what I did or said she was sure I struggled with my breathing because I was having a panic attack. Five minute GP appointments are of course the norm and perhaps faced with a patient struggling to breathe but with a clear lung x-ray (after my very first appointment) then it must be a panic attack. I can’t help but feel that if she had even once decided to query my breathing issues and hadn’t just dismissed me as a panicked then perhaps I would have been healthy months ago.

 

f7f783135e89662f_cartoon_fitness_lady.xxlargeI am allowed imagine that this is what I normally look like when healthy!

Again, let’s assume the new diagnosis is correct. Within 6 – 12 weeks of receiving specialist Respiratory Physiotherapy, I should be completely back to normal – incredibly unfit but normal. I reached crisis point November 17th, 2013. If my doctor had queried my breathing issues then, I could have seen a respiratory consultant and had physio within a week or two of that date (with my private health insurance). Let’s just assume that I took 12 weeks to return to complete normality – then I would have had my life back by mid-February at the latest, possibly even by the end of December. 

Instead of this, I have not worked since November 17th and have been on half-pay since mid-May with no pay at all due November 17th next. My illness has not just been an emotional and physical drain on myself, my husband and our families but also a financial drain. In addition, my school has not had a Head of English since November last and have had to pay temporary staff to cover my teaching hours while I was on sick leave. At times my boss has let it slip (unintentionally), that this has put a considerable strain on the finances of a school, which (like all other schools) despite claims of ring-fenced educational funding, has had its budget dramatically cut. 

Surveys suggest that roughly at least 25% of all M.E. patients are misdiagnosed. Surveys also suggest that those with M.E. diagnoses tend to be high achievers. With 250,000 current M.E. diagnoses in the UK, then it is possible that up to 63,000 of these are incorrect. That is 63,000 people – the size of Maidenhead or more than half the size of Colchester whose lives are permanently on hold because they have an incorrect diagnosis. 

How much are these people worth to the UK economy? 

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If we assume that at least half of these people (31,000) are on the most basic benefits, then this could easily amount to £3360 per person per year. This is a total benefit spend of £104,160,000 a year. This is of course a figure that ignores whether they live in council housing or are on a higher rate of benefit. Now these people aren’t an example of benefit scroungers, people who could work but choose not to. These are people whose ill heath has disabled them to the extent that they can no longer work. 

Imagine then that half of these 31,500 people who are on benefits, have actually got an illness that is curable then that potentially is a saving of £52,080,000 a year. 

Again, this does not include any savings made by the NHS for no longer having to, at the very least, subsidise their prescriptions. Myself, I am on medication which should cost me just over £32 a month which is further subsidised through a pre-payment system to less than £10. Assuming once again that these 31,500 who are potentially curable are also on the pre-payment system then this is a cost of £693,000 to the NHS per year. This of course does not reflect the true cost of patients’ medications. 

Ignore the financial costs and simply considerable the cost to this nation of the potential removal of 63,000 high achievers from the world. I am a damn good teacher: anything less than Outstanding lesson observations are shocking for me and highly unusual. Twice departments I have run have been considered Outstanding by Ofsted and my personal contribution to this status was on both occasions recognised as key. My potential permanent removal from the education system through a misdiagnosis not only would have a negative impact on my life and the lives of those I love but on the children I have not taught all year and all the future children I would not have taught. I am but one contributor to the greater benefit of society. There are at least 62,999 other M.E. patients who too may not be contributing what they should because of misdiagnosis. 

It is for this reason that I am frightened, frustrated, aggravated and infuriated by the concept that if it wasn’t for my best friend happening to know a pain clinic nurse and they happening to have a conversation about me and her friend happening to mention that I might find a pain clinic useful, that I might have never gotten well. I might have lived forever within the bubble world of M.E. Slowly making progress and getting some of my life back but never quite understanding why those final steps towards full health were unachievable. 

It is or this reason that I am frightened, frustrated, aggravated and infuriated by the concept that there may well be 62,999 more patients out there who may not have had the luck that I have had; they may not have had the knowledge that I was capable of gaining; and they may not have had the emotional support that I had from family and friends to keep on fighting. 

How many lives are on hold because the medical profession is sick of us and don’t know where to go next? How many of us may never see a proper diagnosis because we are considered malingerers, panickers or annoying or some other form of medical neglect. 

My husband has said time and time again that such anger is pointless – it will not change my past and it will not change my future. He says that there is no point fixating on the potential that if it wasn’t for luck I may never have been re-diagnosed (assuming of course my current diagnosis is correct). He is absolutely correct of course. Doesn’t stop it being a frightening, frustrating, aggravating and infuriating thought. 

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You Can’t Be Serious?! Really!?

Well now, that was unexpected.

It had seemed for some time now that I had been abandoned by all and sundry from the medical professional. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality.

not-interested

My pain consultant had made two referrals, really in his own words just to make sure there was nothing else going on. One was to see a clinical psychologist who spoke to me and looked at my records and declared me a model patient, that the rest of her patients should aspire to be like!

The second was to see a Rheumatologist. My pain consultant however was adamant that if it looks like a dog (i.e. M.E.) and barks like a dog then it must be a dog (M.E.). I therefore paid no heed to my appointment, attending simply to ‘be sure’ but knowing that nothing was really going to change. I had M.E. and this consultant just like all the others would tell me to just keep doing what I was doing and he didn’t want to see me again.

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My appointment came on a bad day. I was feeling the worst I had felt for months. I had driven and walked too far the day before and I was paying for it that morning. By the time I reached the consultant, I was in a lot of pain and very fatigued. In hindsight, perhaps this was the best thing to have happened. There was no way this guy could simply dismiss me and say that nothing was wrong or say that I had M.E. and accept that it was okay for me to have to handle it alone. (I had already made me mind up to tell him that really I needed more support).

His questioning of my story was very different from previous medical professionals. They seemed to want a narrative – he rather wanted to know the progression of my symptoms and their timelines. He wasn’t interested in where I had been or whether or not I was working, he simply wanted to know my symptoms.

His next step was to get me to rank a series of very much M.E. symptoms (fatigue, dizziness, tingling sensations, brain fog, muscle pains) from 1 rarely to 4 everyday.

Finally, he did what I can only assume was a Fibromyalgia tender points test. His clear skill in what he was doing was obvious as he was able to pick up weaknesses in both my knees (hurt in a riding accident) and in my neck (sore for the last couple of months) – all without my having to tell him.

It was then the shock came. He told me that he didn’t think I had M.E. but rather something called Dysfunctional Breathing Syndrome or as it is sometimes known Hyperventilation Syndrome. I was vindicated in his statement that it was not a panic attack – they were very different. My doctor has spent the last ten months telling me I have panic attacks – despite my numerous times telling her that they were not!

 just-breathe

To be honest much of the rest of our consultation was spent with me going (in my mind), “sorry, you don’t think I have M.E.?!” on repeat.

Apparently, I breath too many times per minute – he guessed about 20 times per minute while a healthy rate should be about 8 times. Later when I tested myself at home, I got rates from 17 – 30. All far too high.

Additionally, if you breathe in, then out, then hold your nose, you should be able to do so for at least 30 seconds. 15 – 30 seconds is a sign of a moderate breathing problem, 0 – 14 a severe problem. I scored 12 seconds.

The rating test he gave me was also highly indicative of it. He said a score of about 10 was completely normal. I, on the other hand, had a score of 36!

His conclusion then was that I had this Dysfunctional Breathing Syndrome with secondary Fibromyalgia – i.e the Fibromyalgia was caused by my dysfunctional breathing. By over-breathing, I wasn’t giving a chance to Co2 to convert the O2 into my blood stream – this therefore in layman terms carried my breathing problem around my body. This, in addition, means that my body cannot handle excess acids (such as lactic acid) and the minerals in my body that would naturally deal with excess acids in the short-term would by now be nearly gone if not gone altogether. This therefore explains the Fibromyalgia type pain.

The suggestion is that this all started after I had effectively been ill for about 6 weeks, with a series of bad colds culminating with particularly bad respiratory symptoms in my final cold. It would also explain how for the first two months of being ill, all I experienced was intense fatigue and breathlessness, at times acute sessions of hyperventilation or as I have come to know them collapses. After some time however breathing issues began to create pain issues in my legs and the triangle across my shoulders to the top of my neck.

Of course, there is no guarantee that this is indeed what I am experiencing. M.E. may still be playing its role. I cannot therefore afford to get too excited about a curable illness.

If he is right however then this is exciting news. Within six weeks to two months of specialist respiratory physiotherapy, I should be right as rain. Inconceivable. The best news of course is that my private health insurance will now cover the treatment – they did not cover M.E. This means that instead of waiting for two months for my NHS physiotherapy appointment that came through today, I will only have to wait a matter of a week or two. Theoretically, it is possible that not only will I be healthy again soon but I could even be running by Christmas.

My mother-in-law said the news, ‘floored her’ and I totally get what she means. I am only just beginning to come to terms with it. I had myself all set for a personal battle for recovery or at least remission from the worst symptoms of M.E. I was emotionally preparing myself for no longer being able to work full-time, perhaps even part-time. To have the future path that you had prepared yourself for so thoroughly changed takes time to get used to.

Although I must not allow myself to get too used to it – just in case.

hope

Frustration

At the very top of my must-go-to bucket list is Iceland. As a young child, I watched a TV series set in Iceland all about a young boy, his family and very importantly his horse. I don’t recall the name of this series or indeed even the storyline. I do recall however quite vividly – the landscape. Even as a very young child I was able to appreciate that Iceland was a place of splendour unlike anything I had ever seen before. I was determined to one day visit it and see for myself the place I had fallen in love with as a seven year old.

Over the years my ardent desire to visit Iceland did not wane. As I learnt more about the country, reasons to visit it just kept piling up. I wanted to bath in the Blue Lagoon, a spa in Reykjavik heated naturally by geysers. I loved to ride so couldn’t believe it when I learnt that the Icelandic pony not only could carry vast weights but also had an additional gait between trot and canter. I read about the beautiful fjords, 24 hour daylight in the summer and its tiny population. Everything I learnt made me want to visit the country more and more.

It was therefore with great excitement that myself and my husband started to plan a mid-term break in Reykjavik for February, 2014. We were going to go horse-riding, trekking across lava fields and glaciers, whale watching and swim in the Blue Lagoon. We even hoped that my best friend, Sarah, would join us. Five months prior to our departure date I ended an ordinary working Friday with an horrendous cold and the rest as they say is history. February mid-term break came and went and we didn’t fly to Iceland. My dream seemed to have been crushed.

Having finally decided to go on holiday, eight months after becoming ill, we chose to go on a cruise taking us to Norway and Iceland. There was more about the realities of holidaying with M.E. in an earlier blog. It seemed therefore that my dream of visiting Iceland was going to come true. Yes, it would be a modified version of the dream but it would at least, I felt, affirm whether or not this dream, idyllic place was all that I imagined it to be and whether it deserved its place on my bucket list.

In Norway, I had perhaps done a little bit too much the first day so on our second day I had to be careful and only disembarked for a brief coffee. I wasn’t bothered though – we were in beautiful surroundings so quietly resting looking at the view was acceptable.

Iceland, however, was all that I dreamed it would be. Our first stop Akureyri, in Northern Iceland, was absolutely stunning. One of Iceland’s largest towns (with a population of 17,000), it was surrounded by the most beautiful of mountains, still capped with the winter’s snow. All I wanted to do was get off the ship and wander around starring at these stunning views.

I rarely felt really frustrated with my M.E. but that day I could have cried. My mind and my husband were telling me to be careful but my heart didn’t give a damn, it just wanted to forget that the body it was attached to was ill. Despite a multitude of warnings from my husband, I insisted we climb up numerous steps to a church and then higher again to a botanical garden. I ignored all the warning signs that I was beginning to struggle. So what if I had to stop and rest continuously and was finding myself out of breath continuously – my heart was telling me that that was okay, I wasn’t pushing myself too much.

In total I probably walked about 2 miles, to and from the ship. I just wouldn’t allow myself to believe that that was stupid. Prior to going on holidays on a good day I could walk a mile. Why I allowed myself to believe that what I was doing was okay is beyond me! Or is it? The reality was I didn’t want anything to spoil my dream. Iceland had been my dream for almost 30 years, allowing myself to restrict my exploration was too heartbreaking to actually do.

Of course by the time I was returning to the ship, I was in a state of near collapse. Every couple of feet I had to sit and rest. Moving one foot in front of the other was incredibly hard. The gangplank into the ship was not unusually steep but that day, I had to literally drag myself up it, hanging onto the railings for support. Three hours after landing in Iceland, I was back in bed, a location I stayed in more or less solidly for the next 20 hours.

It meant of course that on our second day in Iceland, I could do little more than stare out of the window at the wonderful town we had found ourselves in. There was no way that I could physically go ashore. My husband tendered ashore alone, to wander around my dream country without me.

Normally, my frustrations don’t get in the way of my doing the right thing. Normally I am quite good at balancing what I want to do with what my body can cope with. Normally I am quite good at putting aside my desires for the good of my health. This however was an occasion where I almost felt like I had no control over the situation, I was going to do too much because I wanted to and well to put it simply that was that. Of course, the reality is that because I allowed my desires to overtake my health needs, I therefore lost a day in my dream country. If all I had done was wander a little around the first town, drink several coffees and admire the view then surely on my second day in Iceland, I would have been able to do the same and not have been left behind while my husband experienced my dream.

It is undoubtedly normal to feel frustrated. How can you not? Usually, suddenly and unexpectedly everything you understood about who you were and where your life is going is ripped away from you. Suddenly you are expected to manage every second of every day and constantly assess and reassess how you are feeling, should you rest or is it okay to continue. Of course it is normal to feel frustrated about what you might view as a lost future.

The Sochi Winter Para Olympics were on the first winter I was ill. I remember watching these amazing paraolympians do the most amazing of things: slalom blind down a course that would have challenged the best skiers; war veterans who had lost both legs ski jumping. It was incredible. These people had been through hell and back and yet they were brave enough and strong enough to now be competing for their nation. It seemed incredible. I do remember though that it also frustrated me greatly.

I have no doubt that should I have gone blind or lost a leg that I would not have been skiing for Ireland at the Olympics. Pre-illness I was in no way sporty and that surely would not have changed. What frustrated me however was to think that even if I wanted to, even if I suddenly had the desire to go ski jumping, I couldn’t. It seemed unfair that these people were able to tackle their physical disability and win their battle with it.

I, on the other hand, no matter how much I desire to ski down a daunting slope, while I have M.E. won’t be doing it. There is no getting around the disabling factor of fatigue and PEM. There is nothing you can take that will prevent you from getting it. Strenuous exercise of any description can cause you irreparable harm. The limiting nature of this I find very difficult to deal with. The deep frustrations it cause me never go away. Just usually I can suppress my desire to do something by considering the repercussions.

Dealing with your sense of frustration in a sensible way is all about learning to be ill. For me in a way it is about sharing my sense of frustration through my tears or through my words so that those around me understand why I want to push so much when theoretically I am ill. Allowing my frustrations to win over what I know is sensible is never going to be the right thing to do.

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You will come across lots of people who will argue that you should abandon all your dreams and hopes. This disease means that you will never live your life again. That this disease should be what defines you. I, personally, cannot see how that can in any way help your mental health. I believe recognising that certain things frustrate you means you still have dreams and aspirations that go beyond simply being ill. I believe that these can provide you with hope and the motivation to keep on fighting this disease. I need something to get me up in the morning and to make me smile when all I want to do is cry – without dreaming and the inevitable frustrations that will follow, I do not know what would keep me going.

Of course who am I to say how you or anybody else should feel about your illness or feel about your frustrations but who can argue against the power of positive thinking.

On a daily basis I have to tackle the limiting nature of this illness. The old me, who never really let anything stop her, is still there so of course at times I just want to scream at the world and ignore all the sensible advice my mind and those around me give me but I have learnt to ignore them at my peril.

What frustrates me must simply go back into that box entitled, ‘Not for Me, Just Yet.’ That doesn’t mean I should give up on my dreams and wishes, rather it means I shouldn’t let my inability to do them depress and anger me.

I’ve Got to Get Out of This Place: Holidaying with M.E.

Having M.E., you live in a self-imposed bubble. A self-imposed bubble but equally a bubble over which you have no control of its size. For some its radius is a mere few metres, for others it is several miles. This is however always an almost completely translucent bubble, few from the outside can see it and although you are always aware of it, from the inside you too can only sometimes see it and you can easily allow the very existence of the bubble to slip your mind.

You can considerable expand your bubble by using the power of adrenalin. Adrenalin pumps up the bubble considerably, enabling you to walk further or stay more active longer. Adrenalin however fundamentally weakens the structure of the bubble. Adrenalin does not add extra material to your bubble, your bubble just becomes thinner and thinner and thinner. While it will for a long time remain intact, prolonged expansion using only adrenalin means that its walls become weaker. It may seem like you are coping with the expansion from outside of the bubble but in the inside, you are feeling weaker and weaker as everyday goes by. Ultimately adrenalin can be a destructive force. Allow it to keep expanding your bubble synthetically and one day it will suddenly burst. Without the safety of your bubble, you absolutely collapse, unable to complete even vaguely what you could have completed prior to your bubble expansion.

There are things you can do to try and strengthen the structure of your bubble: you can rest a lot more, you can go to a spa but ultimately these are just sticking plasters. If you continue to do more than your bubble makes it safe to do, your bubble will burst.

This was my experience of holidaying for the first time with M.E. For 10 days I did so much – I walked 2 or 3 times further than I should have, I sat for dinner for two hours every night and socialised, I lay on a sun bed ‘resting’ surrounded by the chatter of other guests. I knew I was taking a massive risk by doing this so tried to counter it by ensuring that I rested in our room during the day, I went to the spa every day, I went to bed about 8 every night. My bubble still burst and it burst in quite a dramatic way. I went from one minute feeling fine to the next minute barely being able to walk across a room and desperately nauseous at the sight of food.

What was the catalyst that lead to this collapse? I simply wrote for just a little bit longer than I should have. The catalyst wasn’t that I walked too much around town or went out dancing at night. You could argue that there wasn’t really one catalyst to that collapse but actually very many – what about the walking too far every day for 10 days and the socialising over dinner for two hours every evening? You would of course be right. When you are having a lovely time, it is very easy to allow yourself to believe that just because you feel okay at that very moment or even that you feel okay the next day, that prolonged over-exertion won’t lead ultimately to a collapse.

This is the power of adrenalin. Adrenalin masks how your body is feeling; it tricks you into thinking that your body can do more than it actually can. Adrenalin takes no prisoners however – when it decides it is time to disappear, it will disappear and what’s more it will take your energy with it.

Am I then advising against holidaying if you have M.E.? No, not at all. I am however advising that if you are to do it, you don’t forget that adrenalin may well cause you to do far more than you really know inside your little bubble, you should do.

I reached the point after about 5 months of being ill where I was desperate to get out of the house, out of Stratford upon Avon and go somewhere new. I wanted to see new people, new places. I wanted to eat new food. I wanted to wake up in a new bed. I just wanted everything to be different. Throughout my illness I never suffered from cabin fever. Normally during half-terms and summer holidays I would come down with cabin fever within a week or so. I knew I was very ill because I never felt that way. Yet I was still desperate to get away and to be in a different environment. I never felt bored just sick of being in the same place all the time.

It is very depressing to hear your husband and friends and family tell you all about their great holiday or where they have been for work. We normally went on holidays three or four times a year so the concept of having months stretching ahead of me with no plans did get me down.

We hummed and ahhed about how we should go on holidays. Initially, I thought an all-inclusive resort somewhere would be perfect. I wouldn’t ever have to leave the hotel unless I wanted to and was able to. We had, however, never been on such a holiday. We always liked to travel independently. The adventure of searching out where to stay and where to eat was all part of the holiday. This time however we knew that that was not going to be possible.

The other draw back of course to going on holidays to some hotel somewhere was simply the process of getting there. We knew that Chris would have to carry all of our luggage as I was no longer able to do this. We knew that just getting to the gate in an airport might be enough to cause Post-Exertional Malaise, never mind adding in a flight and then transfers after that. It seemed therefore that a hotel someplace warm was probably out of the question. We had also learnt that a hotel in the middle of a city was also out of the question, having experienced the repercussions of this after our trip to Cardiff.

What then was the solution? A year earlier, in desperate need of a holiday, we had gone on a very last minute six day cruise from Barcelona to Dover. It had been perfect for what we needed – a few days away where we had to think about absolutely nothing. We decided that while cruise ships tend to be inhabited by residents significantly older than ourselves, it provided the perfect compromise that we so desperately needed. 8 months after I got ill, we sailed from Southampton to Norway, Iceland, the Faroe Islands, the Orkney Islands and back to Southampton. In many ways it was the perfect holiday although if I was to do it again there would certainly be things I would bare in mind.

I hadn’t read much about other people’s experiences of holidaying with M.E. and indeed in hindsight perhaps I should have. Do I regret going on holiday? No, but I really wish I had known to consider certain things before we left. Would I do things differently if we were to go again? Of course.

As always, it seems that holidaying with M.E. is all about trying to balance the practical management of this illness and the emotional desire to ‘be on holiday’. Without a doubt this was a balance that 80% of the time I got wrong. Except for one day, I got it wrong on every port day. Sea days were slightly easier to balance. The question was always, ‘is this activity worth the potential pay back?’, ‘is the payback going to worsen my illness or is it just going to be temporary?’ There were a million decisions to make every day that had a direct impact on my health. Of course what I didn’t consider at the time (and I don’t understand why) was that even a seemingly temporary impact on my health actually contributed to the overall state of my health.

Being ill at home is so much easier. You learn what the particular parameters of your illness are – you understand what your bubble really is. You know just how far you can push things. You know just how far away something is when you set out for a walk. While after a week of my holiday, at least when it came to the ship, I could answer some of those questions, it was the added peripheral stresses that were often unpredictable. You may be able to walk to the coffee shop fine but it seemed there was no real pattern to how busy or noisy it would be. So one day you would walk there and there would be plenty of seats, even seats away from the rest of the cafe. The next day, at the same time, it would be filled to capacity but there would be one little seat in the centre of all the noise. The next day, at the same time, there would be no seats so you would have to walk further than you intended so you could sit in a different seating area. All of these things were an unexpected drain on me.

In addition, we never really considered the location of our cabin, except that I requested it was close to a lift so I wouldn’t have to walk far. It was and that was great, except what about the 800 steps that were needed to walk to the restaurant every night and the 800 steps back? Luckily, the spa was almost directly over our cabin so I didn’t have to walk far to there. What about the library that was my quiet escape often during our holiday – well that was probably another 500 steps there and back. In relative terms, nothing practical that I wanted to do was close to my cabin. When I left, every second day I would take 4000 steps, on holiday I took anything from 6000 – 10000 a day. An amount that was absolutely unsustainable.

Consequently throughout our holiday, I was very fatigued and spent much longer lying in bed than I normally would – but it was the only place on the ship I could lie in silence. Equally, as I said above, I don’t think I really understood the extent to which my body ran on adrenalin, day after day. In your little safe bubble at home, you get used to understanding whether today should be a gentle day or not because your body tells you so. At home however your body rarely runs on pure adrenalin. Your body once you tune in to it and can hear it, will more often than not tell you straight up what it needs to do or not do today. Adrenalin however masks this.

So, if you are the sensible one and feel you should research holidaying with M.E. before you do so yourself, here is my list of pros and cons about holidaying but in particular cruising.

Pros

1. Embarkation and disembarkation in Southampton meant no flights or transfers.

2. Luggage was collected straight from the car and placed in our staterooms – no dragging of bags everywhere.

3. Having arranged Priority Embarkation, there were no long airport queues. The whole process from car to being in my stateroom took about 15 minutes. Although my dignity didn’t allow me to use it – I could have been wheel-chaired on and off the ship – this I regret not doing – it would have at least reduced my energy requirements on two occasions.

4. One of the most important pros was the onboard spa. I may not have been able to use any of their treatments but the combination of their hydrotherapy pool and heated stone lounge chairs rescued me from collapse on many, many occasions. It also gave me somewhere very tranquil to lie still and meditate all day if that is what I wanted or needed.

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5. I registered myself as disabled. Among the staff that needed to know there was an awareness of my illness and people were extremely kind to me.

6. On days where I couldn’t go to the dining room to eat, staff would arrange for my meal to be sent directly to our stateroom. I spoke to the Head Waiter about this on our first night.

7. I told the Maitre-d about my illness and how having somewhere in the restaurant a little away from the crowds would help. We were given a table that backed up to a window – I could sit with my back to the window – therefore reduced somewhat the noise around me.

8. Room service was included in the price so if my health dictated it, I would never have had to leave my stateroom. I had breakfast there almost every morning and had dinner there 5 times.

9. Every day the ship was on the move, so everyday my view changed. I didn’t have to sit bored by the same pool every day.

10. There were very few children on board so I never had to deal with screaming kids and tantrums. The atmosphere was continuously tranquil!

11. On sea days there was a multitude of activities on – while I wasn’t able to partake in most of these, it did give something for my husband to do while I rested.

12. We either docked or tendered in the centre of most of the towns we stopped at. This reduced walking distances and allowed some very limited investigations of where we stopped.

13. The ship provided excursions that were ‘low activity’ – most of these however were still quite long – 2 – 4 hours.

Cons

1. Although I requested a cabin close to the lifts, I hadn’t really considered just how far I would have to walk to go from one end of the ship to the other. This meant that from leaving my stateroom to going to the dining room and back, I would have to walk about 0.25 mile. This had to be done several times a day. Consequently, I went seriously over my step and distance allowance everyday. It was only because I rested as often as I could, used room service and used the spa that I had only one very serious collapse. In hindsight, I should have asked for a room midship – this at least would have reduced my walking distance slightly.

2. We had chosen a cruise that mainly went to small towns quite deliberately – this enabled me to be able at least to see the town from the ship. The reality was however that I was doing so much walking around the ship, I wasn’t really able to do much walking around the town. This was a real shame as some of the places we visited were just so beautiful.

3. Excursions provided by the ship were often very long and often quite expensive. While you could choose excursions with a limited amount of walking, there weren’t many that were very short! We only chose two excursions and both were over 4 hours long. By the time we got back from the first, I was in a very bad state, very very close to collapse. I still consider it worthwhile however as I wouldn’t have been able to experience the stunning scenery of Norway without it.

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Our second excursion was on a Super 4×4 Jeep in Iceland. Oddly, although it was very long, my body didn’t react against it – that could of course have been down to adrenalin.

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Excursions therefore were all about trying to balance the advantages and disadvantages.

4. We booked an inside cabin because it was cheaper. In hindsight, we absolutely should have booked a balcony. This would have enabled me to sit somewhere quiet and private and watch the world go by. It would have made eating in the stateroom very comfortable and therefore not something I did just because I didn’t feel well. Eating more in the cabin would have enabled me to walk less.

So will I go on holiday with M.E. again – you betcha! In fact, we have already arranged a weekend away in Wales at the end of August. This time however I think I will be a little more cautious about what I do. I think I will listen to my body more but also listen to it with a touch of suspicion. I will be keeping a firm eye out for adrenalin telling me all is okay. Allowing my bubble to be slightly expanded by adrenalin every now and again is no bad thing, I will just need to ensure it thoroughly deflates to its normal size before I try expanding it again.

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