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Not Drowning but Waving! I hope!

There is something really exciting and slightly nerve-wracking about showing a new person around what has become for me reasonably well known parts of Pune. It is exciting because you remember just how intrigued but also slightly nervous you were when you were first shown around.

However, you are also opening up a new side of India to somebody and somehow you feel the weight of responsibility that brings. I love India and I want everyone else to love it too. You worry that if you don’t show enough or show too much you can disappoint or over-whelm somebody. You want your friend to come out the other side not drowning but waving, the very opposite to Stevie Smith’s famous poem, ‘Not Waving but Drowning.’ You want people to come out the other end ready and able to go back by themselves and excited about the idea of bringing others too.

It was with these thoughts in my head that myself and my long-standing adventure partner, Anette, showed Anette (yes another one and she is also Swedish) Shivaji Market and Camp. Although the ‘new’ Anette (as we shall have to call her) has lived in Pune as long as me, she suffers from the well-known ‘no time to get to know India’ disease that all those who work here as expats experience. She also has the comorbidity illness: ‘I have to deal with India all week, on my day off I don’t want to experience India’. The outcome of such illnesses means that Saturday was the first time she actually went out and experienced real India. You know what, she enjoyed it! Slightly over-whelmed at times – yes, but still she enjoyed it.

AAlsterholt  edited-1-12I have a tendency to forget that I am perhaps slightly unusual in that I will do anything and go anywhere and very little shocks me. I tend to take new things, new ideas, new places more or less in my stride and rarely do I find myself over-whelmed by the unknown. Several times now however I have taken new people to Shivaji Market: the main fruit, vegetable, meat and fish market in the centre of the city in a area called Camp. It is a fascinating place. The sights, smells and textures (you will get it when you walk there – yes, textures under your feet) are exhilarating most of the time although sometimes slightly stomach churning! So it was to Shivaji Market that we took the ‘new’ Anette.

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As you enter the market, you are met by swirling brown kites! Swirling over the slaughter houses and butcheries!
AAlsterholt  edited-1A normally chatty woman, initially she was rather silent as she took in all that was to be seen. Silence however broken by laughter as my usual fruit seller upon seeing me and my camera, jumped to his feet, gathered his mates around and demanded a very posed picture with his mangoes. The spontaneous enthusiasm of these guys very much reflects the nature of this market. Yes, serious business is done but that doesn’t mean there isn’t time for a giggle!

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We are told over and over again about how many diseases there are in India – how to watch your fruit and vegetables! Wash them carefully etc etc. For many, the ‘safer’ option is to buy your vegetables and fruit from local supermarkets or the western stores. Anette however was amazed by the quality of the produce, so much better than you can get elsewhere. Was it safe though? No more unsafe than the ‘safer’ options that’s for sure and most definitely fresher!

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Look how fresh and beautiful all the vegetables look. This stall provides to most of the top international hotels in Pune. 
Not being a fish eater, the fish hall does at times put me off although it never smells – not at all. Definitely some flies hanging around and certainly not everyone uses ices
– which given the day we went it was 38 degrees – well that has got to be just a touch dodgy! For a newbie, other than the meat stalls, this is probably the most challenging place to find yourself. It is extremely busy and you have to push through people, trying all the time to watch where your feet are standing or rather on what you are feet are about to stand on. I find this place fascinating however. Fishmongers shout out their wares as you pass by – offering you Indian salmon, lobster, prawns, bass, king fish and many more.

 

IMG_0120Outside the fish hall for me is the most fascinating place. It is the ice stall! It just sells huge blocks of ice. Stall holder or just browsing customer goes and orders a certain weight of ice. The ice is then crushed put into a box or a bag and money is handed over. The ice stall seems a long, long way from the modern world. Indeed, it is not completely uncommon to see hand carts of blocks of ice being pushed through the city streets with various vendors stopping them to purchase off them. Another reason, indeed if you even needed one, not to eat ice or ice based drinks!

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My chicken does not come from Shivaji Market – I will repeat this until I believe it!
Next to this area is the chicken area and frankly – well I’m going to continue to pretend that the chicken I buy from my local 5 star hotel, does not come from here. I am equally going to pretend that any minced chicken I buy, does not also come from here. Nobody please try and dissuade me of this fact!

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Well surely such a place was your maiden dream too!
Being in Camp is the only excuse one needs to, well, eat at Ram Krishna’s! They do the very best traditional pure veg food I have tasted in this city. This time, both Anettes had never been there so definitely no excuses were needed. The walk from Shivaji is always filled with colour and life, again an interesting introduction to India if  you haven’t done it before.  There is always something that breaks your heart, something intriguing and always something that makes you laugh!

This time the streets were filled with even more colour than usual. It was Shivaji’s birthday (again, it was his birthday a few weeks ago too! Different dates are celebrated by different political parties). As always any excuse will do to put up mandals (stages used for religious objects) and flags – this time huge orange ones! What amused me however was the different takes on this Maharastrian hero. In one sculptor he appeared exceedingly stately, the next well just a bloke hanging out probably chatting with his mates.

Anette (guess we call her the ‘old’ one) brought me to a new textiles shop where I bought the most beautiful chiffon to make a dress. Total cost including making of dress about £20. Further along, I spotted a tiny sari shop and picked up two saris for £3 each. These will be turned into beautiful skirts – total cost of each skirt £5.50. I just love how I can get the most beautiful textiles and tailoring done for next to nothing. “New’ Anette seemed initially a little shy about just walking into shops, especially the tiny ones but ‘old’ Anette and I are perhaps now old hands and are no longer quite so intimidated by it!

AAlsterholt  edited-1-18My favourite vision of the day however was ‘old’ Anette picking up a trumpet and giving it a go in a metal shop. The shopkeeper seemed a little bemused by the fact that she knew what she was doing (she plays various brass instruments) – again women here don’t necessarily play such instruments – saying that in the west they are not always considered appropriate for women either! In true Indian style however he found an opportunity to have a laugh, picked up another trumpet and joined right in with her! Apparently, it was in the wrong key however and she walked away empty handed.

IMG_0122Our wander then took us up the busy and in my mind less enjoyable MG Road – here western shops compete with tiny independent ones but it seems more touristy; less local. It may also have been that by then I was hot, tired and just a little hungry – never eat on the morning before you go to Ram Krishna’s! You can’t, otherwise how will you manage to eat all the yummy food you have ordered? Especially, of course, the masala paper dosa – a must have!

Satiated, home we went with I hope ‘new’ Anette feeling slightly less ‘new’ and slightly less over-whelmed by the India I have grown to love. Well, she didn’t say no when I offered to go on more adventures with her – that’s got to be a good sign! Surely, that means she was waving and not drowning.

 

 

An Ode to India – travelling with disability

For me the decision to travel to somewhere new is usually immediate and always filled with excited anticipation – sometimes perhaps with a hint of nervous anticipation. For me the world is large with so many places to visit and so many experiences to have but the world is also small. Nowhere is any more than a few days travel time away. If the world is so small, why not see as much of it as I possibly can in the 80+ years I will spend on this planet?

Everyone is different etc etc, but seriously I don’t get those people who are happy to stay put and never do anything that is out of their immediate knowledge and comfort zone. Seriously, that would be ridiculously boring. I’m guessing, especially if you are a regular reader of my blog, that you feel somewhat similarly.

Now I get that circumstance, personal or financial, can sometimes make having great adventures more difficult or impossible. Having been in the personal circumstance where any form of travel was physically impossible – I get it. I also get just how frustrated I was. I may not have had the ability to do much more than sit on the couch but I still watched travel documentaries – do it via somebody else if that is all I could do.

For me it was obvious that when I moved to India, many (although by no means all) of my friends would excitedly think, ‘Whoooo, whoooo, just the excuse I need! I’m off to India!’,  expecting my friends just to inform me they were coming rather than even waiting for an invitation or permission! Now Colin visited me in October although only for one night – he was here for work. While amazing to see him, I don’t think that is what I had in mind.

The first friend to visit me however was unexpected – well kind of! She has got a just go for it attitude so perhaps I shouldn’t have been surprised when she informed me she was coming on a visit. Her visit however could never have been a spur of the moment decision for her and for purely personal reasons. There was no way she could have just booked her ticket and then thought about the trip later. I can do that, my friend Sarah who I mentioned in a previous blog can do it – but not Gillian! Her decision required bravery and determination.

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Why? Gillian has Cerebral Palsy and this brings its own challenges – walking, balance and fatigue to name just a few. This blog however is not an ode to Gillian – although her bravery and determination indeed justifies an ode to her! This blog is an ode to India.

India can be so unutterly frustrating! It can bring the very worst out in you. You get so frustrated at short-term thinking, false promises and under-achieving, never mind the ‘it’s not my fault’ lack of responsibility taking. Seriously, why I haven’t been jailed for killing somebody in the year we have been here sometimes astounds me!

India however has done itself extremely proud! It can hold its head up as being one of the best countries in the world. Gillian is from the UK, has a German mum and has travelled around Europe and Australia. Without doubt, she says, India treated her better overall than anywhere else she has ever been. Now she’s not referring to the great access everywhere and the smooth pavements – well now she couldn’t really could she, given they don’t exist. She is talking about the people.

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Datta, our driver, is ready and waiting when Gillian arrived

From arrival to leaving she was met by extreme care from friends and strangers. Nobody but nobody on the streets or in shops / restaurants made her feel uncomfortable or made her life more difficult. On arrival in Mumbai, my driver anxiously helped the very, very tired and stiff Gillian into the car in Mumbai. He then spent too weeks worrying that he had touched her because knowing she prefers to do things herself, I had silently indicated to him to give her space. While Gillian will just remember this (if indeed she can) as somebody seeing somebody struggle and doing what they can to help.

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Maggie making Gillian a yummy traditional South Indian breakfast!

My maid, Maggie, the first morning after she arrived went out of her way to tell Gillian that anything she needed at all to let her know and then made her a gorgeous breakfast.

We went to lunch in Ram Krishna restaurant in Camp, the waiter without saying anything or making any form of fuss pulled the booth table out as far as it would go so that Gillian could walk to the seat and not have to slide around. Now Gillian is more than capable of sliding around but that instinctive / spontaneous act was heart-warming.

She wanted to try a pair of trousers on. When she got into the changing room there was no stool but within micro-seconds one arrived – not a word was said, it was just left in the room. Again no fuss. Just a recognition that there was something they could do to make her life easier so why not!

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Rashid sitting as he explains about a temple so Gillian could also sit

When we did a walking tour of old Pune (Chalo Heritage Walks – my lost blog was about this tour), Rashid Ali, the tour leader, couldn’t have been kinder. He constantly found places for her to sit and rest, when she had to take her shoes off to go into a temple, he got down on his hands and knees to put them back on.

There was a really high step into the temple and initially Gillian struggled to get up it. Seeing her struggle, a lady ran across the temple and offered to help her.

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This was the lady who stopped Deborah so Gillian could get by

Later in this same temple, my friend – Deborah (the photographer from my last blog) said that as she was leaving the temple an old lady stopped her so that Gillian could get by. Again, not really necessary but very sweet.

A few days later with Rashid, we went out to Bhigwan Dam which is a nature sanctuary – amazing, if you live in Pune you need to do this. This required the use of a fishing boat. The boatman without saying anything moved his boat so there was an easier spot for Gillian to climb in. When we were required to get off the boat and walk to where we could spot some flamingoes, the boatman first scouted the flamingoes – just to be sure that Gillian wouldn’t walk all the way and not see anything.

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Our very kind boatman

On return, he moved the boat a little further so that she would have to walk less. Rashid jumped into the mud and got himself filthy so that Gillian could climb off the boat a little easier. When her stick made a small section of the boat dirty where she would have to put her hands, Rashid used his own hands to clean the area – again with little thought just spontaneous action.

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Rashid cleaning mud off the boat so Gillian wouldn’t get dirty

We saw the flamingoes but they were just too far away for my camera to take a good shot and Gillian was struggling to see through binoculars – this requires balance and good use of both hands! Rashid initially tried to help her hold them but on spotting a man with a huge lens on his camera, I asked him if he would take a photo to show Gillian – he did it with enthusiasm and a great smile!

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Big lens! This enabled Gillian to see the flamingoes a little closer up

In Goa, we walked to a restaurant along the road but we wanted to go back along the beach. To get to the beach however we had to go down some steep steps without a handrail. Gillian got a little scared but the waiter ran over and gently took her arm and led her down the steps. Again no big deal, it was just what you do!

I could list and list and list all day and all night the amazing individual things Indians did to help make Gillian’s trip a success but perhaps it is best summarised by Gillian’s own insight. She compared her experience her to her experience in Australia. In both situations she felt she got the same treatment but the difference was the motivation. In India, she genuinely felt it was instinctive when people stepped up to help her. In Australia, she felt it was because people were motivated by the understanding that you should help people – there was little instinct behind it. In India, she felt Indians didn’t feel like she was any trouble while in Australia she felt people thought she was making trouble for them.

The thing that had worried me most about Gillian’s visit and therefore was the greatest surprise was staring. I had warned her and warned her that she would be stared at and photographed – perhaps even more than I am on a regular basis. It is far from unusual for me to suddenly have blank strangers around me and somebody else taking a photo, sometimes with permission but often without. Gillian is used to being stared at in the UK but I was worried that here it would be too much even for her.

I was particularly worried about visiting the Gateway of India in Mumbai. I had been there only a few weeks early with my friend and it was the most intimidated I have ever felt in India. We were simply sat down and then suddenly there were 20 plus men taking pictures of us and they simply wouldn’t go away. We had to get up and walk away ourselves. Wherever we were around the Gateway people stared and stared at us. This was on a Tuesday, we were going on a Sunday when it was busier – I was worried!

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Gillian in front of the Taj Mahal Palace Hotel. Picture taken at the Gateway of India – nobody is staring! Seriously, nobody!

So before going to the Gateway, I warned her again. I really wanted her to be prepared for it – she even suggested that we didn’t go. I wanted her to see it however so we went. I couldn’t believe it, not a single obvious stare and not a single photograph!!! Indeed, that can be said for the whole trip. Her whole trip in India there was no staring or photographs! Honestly, I was stared at less over the two weeks that she was here than I have ever been. Clearly, I need to get my stick back out – it appears to make you invisible!

I lie, there was one occasion where she was stared at and stared at so badly that she felt so bad that she left. I live in a very expensive apartment block (society). The people who live her are 50% expats, 25% NRIs (so people whose parents were born in India but they weren’t) and 25% very well off Indians. People in this society as a whole are well off, highly educated and highly travelled. Yet, it was these very people who stared so hard that Gillian didn’t want to hang around in our garden anymore! I was thoroughly disgusted.

In my ignorance, I expected the poorer, less educated elements of Indian society to be the starers – well they surely haven’t received the same education about disability or perhaps even the same exposure, have they? The people who stared shouldn’t feel proud and these people shouldn’t hold their heads high – in contrast, they should hang their heads in shame. For they were the only people in two weeks who didn’t do everything they could to make India proud of them.

Gillian’s experience of travelling with a disability in India was just an isolated experience, perhaps she was lucky or perhaps that is just the way Indians are. Somebody did tell me that Indians would look at Gillian with lots of respect because despite her disability she was still here! I have no idea if you are disable or your child is and you travel to India will you have such a hugely positive experience but if you are thinking about it, I would say from my experience with Gillian – go for it! India is not an easy place to travel never mind if you are travelling with a disability but I genuinely feel that you don’t need to fear how people will react to you being here.

India is definitely somewhere to book with excited anticipation (but just a little bit of nervous anticipation!).

Finally, India thank you. Thank you for being a major part of my friend’s holiday of a lifetime. Thank you for consistently showing her what an amazing country and an amazing people you are. Thank you.

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.

Dahi Handi – the Yoghurt Pot Festival

It would be fair to describe my last blog as depressing.

I had found myself in what was quite a scary position. I fully understood why I was feeling so bad and I also fully understood just how bad things could get if not only was I lucky but more importantly very, very careful.

It seems I had been determined to forget about the fact that my health had been so bad and to allow myself to heal from the pain and fear that caused. On the other hand, the process of forgetting just resulted in my returning to where I had been 18 months earlier. I think therefore that it is not wise to forget just yet.

I must remain careful without going over the top. Every day / week I must plan my time so that serious and genuine rest is also included. Pacing: the very word I had allowed myself to forget but at least for the foreseeable future must remain a key word in my daily life.

Over the last few weeks, I have spent considerably more time at home but this has enabled me to do some pretty amazing things with the energy saved. It has allowed me to experience India!

The period from September to November is pretty much festival time in India! Over the next few months, I will post blogs about these festivities. Each however definitely deserves its own blog.

syama-krishna_sThe month started off with the birth of Krishna and the following night Dahi Handi. Indian’s love to party and what’s more they love to party with no concerns at all for health and safety. Consequently, Dahi Handi was an incredible experience.

You see Krishna wasn’t necessarily the best behaved boy in the world and he just loved, loved, loved his mother’s Dahi – yoghurt. a3-2So much so that he would at any opportunity steal it off his mum. Well now, his mum was having none of that – no, no she wasn’t. So she did what every parent has done in their lifetime – she hung the yoghurt pot (the handi) up out of her son’s reach. Well now, as every parent also knows: children grow. So week after week, she had to hang it higher and higher and higher! But Krishna was clever and he always found a way to eventually get to the yoghurt and get it out.

IMG_0035This story has led to the incredible spectacle of Dahi Handi. Big pots of honey and yoghurt are hung either from tall cranes or from a rope strung from two very tall buildings. Now, Dahi Handi has been somewhat restricted this year due to the drought Maharashtra is currently experiencing so apparently what I saw was far, far tamer than normal!

IMG_0006Having met up with some friends, we were all ready for our experience of a traditional Hindu religious festival. What we weren’t prepared for was the Bollywood dance music mixed with a rave! 1000s of men all effectively had a massive rave for two hours prior to the commencement of the Dahi Handi – timing of which was somewhat vague.

Of course, myself and Chris being the only white people there made us the centre of attention at times but we have become accustomed to being stopped and photographed repeatedly! Our friends, who are of Indian origin but still clearly look foreign were not short of stares and people whispering about them. It is never aggressive though – just intrigued!

Only in India however could a fight break out in the middle of this otherwise very congenial rave; the police wade in and sort it out; and then immediately be followed by a car driving through said throng so that a Bollywood actress could climb out and walk through the rest of the crowd to the stage. My friend’s husband was very pleased as she was his second favourite Bollywood actress!

Finally, Dahi Handi could commence – the actresses had arrived even if she was very late!

A team of men (age 12 – 30 perhaps) formed a human pyramid of about 8 layers. A tiny kid climbed up the pyramid onto the shoulders of the person at the top – the kid then proceeded to try and break open the handi unfortunately he failed so had to climb down again to get something better to break it with! Finally, he succeeded and the pyramid was doused in gallons of yoghurt much to the crowds delight!

Dahi Handi Pyramid – my video!

Dahi Handi – professional video

11947918_10153021637676820_7850001245742241422_oNormally, teams of pyramid builders compete to get the pot with prizes worth huge amounts of money. To make it more difficult, water is sprayed on the contestants so that everything and everyone gets very slippery! With the drought however this particular feature was banned and consequently some communities choose not to have teams competing!

Of course all of this happened on a public street. Eventually one side of the road was closed but crowds spilled onto the other lanes which were still open and now had traffic going in both directions. Chaos reigned! Young boys still ran around the traffic seemingly oblivious to the dangers! We did venture into the crowd at several points but were very grateful to the wise planning of our friends who had booked a table on a hotel balcony overlooking the spectacle.

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It was a very long and very exhausting evening but so, so much fun! We seem to spend so much of our lives socialising where the expats or wealthy Indians go – it is always a relief in a way to spend time frankly with normal people from all classes and walks of life!

Next year we will try and get out to a more rural occasion for Dahi Handi which apparently is a totally different experience! So, give it 12 months and you can look forward to reading that blog too!

Damn You, Kazza!

Wineglass Bay is considered to be the most beautiful bay  / beach in the world so visiting it during our stay in Tasmania was an absolute must.

IMG_4645 My first blog post from Australia was entitled: Not a Kazza in Sight! That turned out to not exactly be true. Kazza definitely came along for the ride. We managed to keep her in abeyance a lot of the time but we couldn’t help her coming to the fore from time to time.

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You see climbing up a mountain(ish) pass (to Wineglass Bay Lookout) and down the other side (to the beach itself) is hard work for a girl with a breathing problem but even worse for a girl with a competition problem. I constantly compete with myself (and some would say others too) and consequently get quite frankly pissed off with myself if I can’t do things. Which we all know is of course ridiculous!

IMG_4674So getting upset that I struggled to walk up a steep hill when I could barely walk to the end of the road this time last year is crazy. Getting upset because I was exhausted at the end of an 11km walk is also ridiculous but I just can’t stand to fail. I can’t stand to admit that I am not invincible which of course is how we got into this stupid mess, September 2013!

Australia was spectacular and was without doubt a holiday of a lifetime – I will always remember pretty much everything we did over those three incredible weeks. Every day brought a new adventure and a new sight that was unforgettable.

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The consequence of this incredible holiday from a health perspective however is that I returned exhausted. My week off to recover afterwards barely touch the sides of my exhaustion (largely because I filled it with activity everyday!). My week off rather than constituting doing nothing, constituted doing lots just not running! That, I convinced myself was a week off.

I had begun to recover and had even done a successful yoga class when our shipment arrived. This involved two solid days of hard work lifting and carrying and packing of boxes. Without leaving my house, I managed to accrue the guts of 20,000 steps a day and burned about 4000 calories! This was not what my body needed. We won’t even get into the psychological impact of lots of wedding presents getting smashed!

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Of course mixed into all of this was more issues with our washing machine which I of course had to deal with while still trying to direct hundreds of boxes to vaguely correct rooms around the house! Exhausting both physically and mentally.

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Note water gushing over the top!

Of course that washing machine repair failed (shock horror) and so it required, a few days later, another fight with a plumber over the course of three hours that water shouldn’t be dripping out of the hose pipe that, unlike what he claimed,- this was not ‘normal’. Every failed attempt to get me to agree that the leaking hose was fixed led to a phone call to his boss and every conversation started with him in Marathi / Hindi explaining that, ‘mam says there is a leak but there is no leak’ quickly followed by my saying (in English), ‘don’t say there is no leak when there is a leak!’ His boss seemed to inform him each time to fix it again! We got there in the end but it did take three hours! Once again, mentally exhausting.

Now that little adventure was followed by my deciding I would get a guy in to clean my windows inside and out. They were beyond filthy – still covered in the construction dust from when they were built a year ago. In places, it was difficult to even see out the window! I agreed to a price and when he would come. I didn’t on the other hand grasp the fact that it would take about 6 guys and about 9 hours of work (over two days) inside in the house and another 2 days to clean the outside of the apartment (on ropes from the roof!). Why would I ever have considered that it would take this long?! Sure our apartment is big but good lord it’s not that big!

While the guys are here, you have to hang around – I can’t exactly leave them unsupervised but it means you can’t really rest. I feel too uncomfortable with having people in to do such jobs to lie on the sofa and watch TV or with them moving around the whole time – go to bed for a few hours. So I continue to potter about, convincing myself that unpacking those boxes or carrying that heavy load is ok when really I am doing exactly the thing I shouldn’t be doing!

These adventures of course are unusual. They are in addition to the everyday challenges that you are faced with here. Where can I buy fruit? Where can I buy vegetables? Where can I buy meat? When will these places be open? When will I have the car to go and get them? What price am I willing to buy the rickshaw driver who is trying to rip me off? Where can I get big black bags for the dustbin when all I can find are little ones? Where do I find cat litter that isn’t vile and disgusting because the cats are hating what I got for them!? Where? When? How?

Over the last week therefore I can categorically say I have begun to feel again the way I did 18 months ago. I am reminded again about the difference between fatigue and tiredness. I am not really tired, I am seriously fatigued. A blog, many months ago now, talked about how I had to walk the tight rope between doing too little and doing too much. Too little and I would make myself too physically unfit to deal with my illness and psychologically do damage by isolating myself from the world but equally doing too much would make me physically more ill and make it harder for me to psychologically deal with my illness (my brain gets tired just like my body does).

cropped-20140318-0801571.jpgThe tightrope is back and once again nobody has given me any safety ropes. While I feel I am in a much better position than I was back then, it does without question scare me. This feels like the worst relapse I have had since I seemed at least on the outside ‘to be better’. Just like I coped before I can cope again.

And here, far more than back in the UK, will help me recover. Here, I have lovely Maggie who comes and cleans my house. The weather is warm and that always helps. I don’t have the pressure of trying to return to work. I can cheat and buy my meat from a 5 star hotel and order my vegetables online (even if the price and quality isn’t the same as buying them elsewhere). I have a driver so I don’t have to worry about not being able to drive or getting the energy together to use public transport. There is also an incredibly supportive group of people here that will help me to look after myself (just like I had back in the UK).

So, rather than seeing my current state has something traumatic and worrying, I see it rather more as a warning, a reminder of where I have come from and where with very little trouble I can go back to if I am not careful. So I will be careful (well, I will at least try).

I didn’t write this blog to worry people but more as my way of saying – ‘Please, those who have been on Karen Duty in the past, can you return to your posts’ and ‘those who are new to Karen Duty, can you please look out for me and be bossy and tell me off for doing too much and understand if I don’t do as much as I was.’

Friendship – The Hilarity and the Tears

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Sarah (on the left), Kathryn, Parin, myself and my sister, Ruth on my hen night!

16 years ago this October, I was lucky enough to meet someone who was to have a permanent positive impact on my life. 16 years ago, I met my best friend, Sarah. Fate plays a huge role in what happens in our life – we can steer ourselves in certain directions but that in no way implies that we have complete control over our lives.

For me, I was hanging out in front of a lecture room at the School of Slavonic and East European Studies in London so I could ‘bump’ into a guy I fancied (he had zero interest in me) while doing my Masters. That day, we met and had coffee but little did I realise it at the time but my life had changed utterly – far more than it would have if there had been a momentary fizzle of something between myself and this guy. This was far more than a momentary fizzle; this was the start of a true, deep and at times hilarity filled friendship. Sarah also walked out of the lecture room and joined us for coffee. This was our first meeting.

Some people come into your life and you know that you have found somebody who will be a good friend to you, who will support you. Generally, you feel that you play such a role in their lives too. Sarah, however, is different. Sarah, I am privileged to be allowed call a friend. She is a step above all other people I have met in my life. She is unique in a way that I could never dream to be. She cares deeply for those around her and will do anything for you – you often don’t even need to ask.

Since we met, I have lived in three different countries and she has visited me in all but one of those countries and more than once at that. The third – well that is India – her last text to me said, ‘See you at Christmas (when we go back to the UK) if not sooner.’ Sarah would never even consider not visiting or going out of her way to make sure that I was happy and comfortable – the thought quite simply wouldn’t occur to her.

Sarah, therefore, over the last 16 years has set a standard for friendship that I suspect is unattainable. She has however also made it clear to me just how important friendship is. Friendship, is not just fun and laughter over a few drinks; friendship is also darkness – it is being there (in person or virtually) when they think there is no light, it is being there to shine a torch into the darkened room of their life and show the person that there is a way out.

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Wonderful Sue on her wedding day not long ago! This picture summarises our friendship perfectly!

Friendship is clearly something that is a worry when you move halfway around the world. While I have no doubts that my Sarah will always be there for me as will Kathryn, Parin, Sue etc etc but they will not be here in India. They will not be there all the time to drink with, walk with, laugh with and cry with. Consequently, Chris and I now face the challenge of finding people who singly or collectively can play all the above roles – face-to-face.

It is abundantly clear so far that every expat you meet has an instinctive desire to make you feel welcome, to help you, to support you and it would seem to drink with you! This instinct surely provides the best basis for the type of person who could one day be a friend. Certainly, I have met people in just a week that I am more than happy to spend lots more time with and who knows maybe fate has already flown my way and I have met the person or people who will become my closest friends while we are here.

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Some friendships come in the ability to be really silly with each other. World Book Day and my former colleagues!

True deep friendships are like the love between a couple – yes, it can come in an instant and both sides can realise that they have met the ‘one’ they want to share their life with. I think most of the time these true, deep friendships just like romantic love, needs time and work to develop a level of permanency. So, who knows who is going to come my way over the next few weeks or years, who knows what friendships will develop.

Putting yourself out there – risking rejection is the only way to find the security of friendship. This was so clearly demonstrated by a Meetup group in Stratford upon Avon, UK that I set up. Now 330 members strong, there had to be the some in the beginning, happy to risk joining just a few people with no real plans and no real idea of where they were going. All of us, however, shared the desire not to be insular but to look to the world and see what it could offer them. We were faced with the choice between loneliness or the insecurity of a situation that could either lead to rejection or friendship. Through this Meetup group, I moved from being very isolated in Stratford to havingan active social life and a network of very good friends who I drank with, walked with, laughed with and cried with.

It is reassuring to know therefore that in the UK I have solid friendships – be those from old like Sarah, Kathryn, Parin and Sue or the newer ones met through the Meetup group. They help to give me the strength to look out to the world here in India and see that new friendships are always possible no matter what stage you are in your life. I threw myself into new / challenging / out of my comfort zone situations to meet my existing friends; I now need to throw myself into everything here too for the same reason.

So Sarah this blog post is dedicated to you and to the incredible friendship we share. This is your birthday present (for yes it is Sarah’s birthday today!).

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J rescued me from a difficult summer and took me in his RV to France – I returned happier and ready to face the world.
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The greatest friendship of all – my husband! He has seen me at my best and my worst! Somehow he still loves me!

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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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Friends and Family: Learning to be Ill

I have always been a very sociable person. Not in the sense of I have a 100 best friends who I couldn’t live without. Not in the sense of loving to go clubbing until dawn every weekend (in my early twenties definitely but not in the last ten years or so). I am sociable in the sense that I need to interact with people. I need to sit and chat, debate, discuss, laugh with people. I think I would struggle to live in a world where I never saw anyone but myself and my husband.

My world has narrowed considerably over the last number of months. I no longer work so that social interaction has disappeared. I do still try and meet friends at the weekend but usually for no more than 40mins (although I managed 90mins yesterday!). My neighbours are all quite old and don’t really socialise, at least not with me. My closest friends live many hours away from me. My family live in Ireland and my in-laws live many hours away as well. So my world has narrowed considerably although not quite to it just being my husband and myself.

What I have noticed though in myself is an increasing awareness about what others might think of me. Most of the time it is irrelevant. When I’m hanging off a wall because I’m too tired to keep walking, I don’t really care if people think I’m drunk or crazy. I do wish they would ask if I’m okay though, there have been days where I hoped somebody would help me walk the last couple of minutes home. Strangers can think what they like.

The thing that really matters is how your friends and family interact with you. This has been done before but I thought my audience included people with no knowledge of M.E. so I too should include this important information: the dos and don’ts of interacting with me as a friend or family member.*

Let’s start with the Don’ts

1. Don’t tell me just because I look good the day you see me, “you look so much healthier, isn’t it great you’re getting better!” It’s not that I don’t want that to happen but if you don’t know the full story, you don’t know what I’ve had to do to look so good that day – slept all day in preparation, rested repeatedly whilst doing my make-up. It annoys me because it makes me feel you are belittling a genuine biological illness. I know you don’t mean to but it’s how I feel.

2. Don’t make parallels between myself and somebody who has ‘recovered’ unless you genuinely understand my illness and theirs. Unless you know the full picture and tell me it, how can I really be inspired by it?

3. After talking to me about how I’ve had to reduced my activities substantially just to get by, don’t tell me that you know x inspirational person who has M.E. but they have children or a job (which you don’t) and have to push on through and they’re doing well. Pushing on through will delay my remission and you don’t know their full picture, you don’t know what they have to do to appear to ‘push on through’ successfully!

4. Don’t ignore me, I know you sometimes don’t know what to say because you don’t understand what’s wrong. That’s okay, I still don’t thoroughly understand what is going on so how can I expect you to?

5. Don’t remain ignorant of M.E., do a little bit of research. You won’t truly understand my day to day life but at least you’ll get an inkling.

6. Don’t suggest that I’m lazy. Think about it, was I lazy before this began?

7. Don’t be afraid to ask me lots of details about what is wrong. If it helps you to understand and to give me support, why would that be problem?

8. Don’t be upset or annoyed if I cut our meeting short. I really appreciate that you may have gone out of your way to meet me. I really appreciate that you assumed we’d spend more time together. Understand though that if we do, I will become quite ill and pay for it later.

9. Don’t offer me advice unless it is thoroughly researched. I know more about this illness than you do. You don’t recover from this in the same way as other Chronic Fatigue illnesses. I find it upsetting that you think there is an easy answer that would have made me better already.

10. Don’t pressurise me into exercise or try and get me to be more active. Being more active unless very carefully managed can make me very ill. I know you’re used to an increase in exercise levels being crucial to somebody’s improving health. It’s not the case for us.

11. Don’t tell me that you know what it is like to be as tired as I am because you’ve had a long day at work. Be honest, you don’t know what it is like unless you suffer from a chronic debilitating fatigue related illness. I don’t want to undermine your sense of being exhausted and I don’t mind you saying you’re exhausted but don’t say everyday tiredness is the same as my fatigue!

The Dos

1. Do assume I’m telling you the truth about my illness. Think about the type of person I was before I got ill – am I really crazy or lazy?

2. Do assume I need more support than I say. Offer to help around the house or simply offer to make the tea when you visit. It is then my choice to take you up on that. Understand though my sense of dignity makes me hate to accept help. Keep asking though, I’ve noticed that my sense of dignity doesn’t care so much anymore.

3. Watch how I look, if I start to go pale, lose words, seem to lose focus, tell me. Ask if I would like you to go as I look like I’m getting tired. That way you don’t just leave making me feel that I’ve done something wrong also you might be making me aware of my increasing tiredness that I’ve not noticed because I’m really enjoying your company.

4.If you’ve done lots of research into M.E. and have had long conversations with me about how I experience the illness, do share what you’ve learnt. We more or less have to deal with this illness alone without medical support. Why shouldn’t you discover the thing that will help me if you know as much as I do about the illness?

5. Do offer me your non-judgemental comfort through your words, actions or touch.

6. Do try and make arrangements to see me in a way that you think will make it as easy as possible for me. Ask me if these arrangements are okay. I hate to have to ask someone to change what they’ve planned because I can’t cope with it. I’d prefer to tell you we don’t have to do coffee at home, instead we can walk into town together. I will really appreciate you trying to make life easier for me.

7.Do stick by me, I hope to not always be like this even though I might. I may not always be an easy friend to have but I will always try and be your friend.

As a teacher I always try and show children that life is not only about rights but ALSO responsibilities so this is what I need to try and do.

My dos and don’ts

1. Don’t get upset by what people say unless I consider first whether it was meant nastily or just said through ignorance.

2. Do ask for help when needed.

3. Do accept that some people (such as my husband) know me better that I do and I should accept that they often know what I should do before I do.

4. Try not to let every conversation be about my illness. I know it’s the only thing that really matters in my life anymore but it’s easy for other people to get sick of a one track conversation. Equally, it’s not good for me to only think about one thing.

5. Do accept that people’s lives go on without me and their failure to keep in contact with me, although upsetting, may not be because they have forgotten about me but because they have full lives that have to go on in my absence.

6. Don’t always assume that my friends should contact me. I know I worry about being a burden to them and they may not want to speak to me but I won’t know that until I try. Friendship is a two way street after all.

7. Do accept that my friends and families don’t mind if you cry on their shoulders and rant at them about the medical profession. They are my friends and family after all. Also accept that if I never share the negative things then they will worry that I’m hiding the things that worry me. This will worry them!

My best friend, Sarah said the other day that I have to ‘learn to be ill’. Sarah was ill for much of her life and so knows what she’s talking about. Our friends and families need to also learn how to cope with having an ill person in their lives.

When you were in school did you find every subject as easy? Did all the students learn at the same rate? Of course they didn’t, as long as our friends and family are learning how to cope, we have to be patient. Is this not just part of our learning to be ill too?

* this is my viewpoint, others may thoroughly disagree based on their own personal experience, illness or understanding.

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