Tag Archives: health

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.

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.’

Buoyed Up With Confidence

So, I have arrived. Still living in a bit of bubble, not quite yet at the point where I can branch out and start to uncover all that India has to and will offer me. With perhaps the naivety of the innocent, we plan to move into our apartment on Wednesday. I say naivety purely as I have been warned, things don’t often go to plan here. 


Tomorrow, we go for a final check of the apartment. Tomorrow, therefore will either be the bursting of our naivety bubble or we will continue to live in the belief that things happen on time and to the stated standard here.  The question is: can you continue to consider yourself innocent of the truth if you are absolutely certain that sooner rather than later things will not go to plan – promises will not be kept? Perhaps informed innocence is a better term – if that is not an oxymoron in itself. Ah India, clearly nothing straightforward here!

A sudden nostalgia for a wonderful friend, Sarah, recently led me to the picking up of ‘Love in the Time of Cholera’ by Gabriel Garcia Marquez. This is one of her favourite books of all time; one that I had never read until now. One of the main characters, Fermina Daza believes that you can like anyone or any place purely by making the decision to like it. That if you choose not to make that decision, you may well learn to hate a person or a place. I have chosen to like India. I have chosen to allow the things that will inevitably disturb my comfort to simply be ‘India’.


Chris and myself have laughed however as to whether in six months time we will still be buoyed with such confidence, relaxation and determination to get on. Once again, is our positivity simply a reflection of our newbie innocence or is it something that you can more or less sustain for a prolonged period of time? Let’s hope so!

I have promised readers a more practical explanation of all that has happened to result in this great transnational move. Well, here it is. 

For years, we have wanted to move abroad, to get an opportunity to live in a completely different culture, learn a new language, extend our knowledge of how the world works. Several opportunities for various reasons over the least 12 months or so have come and gone. Then India came. 

On January 23rd this year, I randomly checked my phone at lunchtime only to see a text from my husband, ‘JLR are looking for people in this city. What do you think? (link to a Wikipedia article about Pune).’ Within 20 seconds, I had sent a text back saying – ‘go for it’. Within ten days, he had the job and it was perhaps only then we realised that we should think about it. We did for about 2 minutes and realised that we were up for anything so location was more or less irrelevant!

Consequently, we have moved to Pune so Chris can work for Jaguar LandRover although seconded to Tata Motors (owners of JLR). We will be here for at least three years although we joke if he fails at his job, we will either stay longer or he will be fired! He will, you see, be responsible for trying to bring a Tata car development project in on time – hence the firing or staying on longer! I have promised him a gin and tonic every evening! Timings and India, well as Chris’ favourite Indian line goes – Indian Standard Time really means Indian Stretching Time!


During this time, I will not be able to officially work. Although it is possible for me to get a work visa, the reality is that this is unlikely to happen. As a teacher in an international school, I would probably only just get over the minimum salary requirement for a work visa, then to get it I would have to go abroad, giving up my entry visa. Should my work visa be turned down – which is likely, I would then be faced with the possible situation that they would then not re-issue me an entry visa as I had just applied for a work visa! The resulting situation could well then be Chris living here while I was forced to stay in the UK for the remaining time on his contract. Not a situation, we are willing to even contemplate. 

As I have stated in previous blogs though I need time, I need time to completely get my health back. I need to be able to set my own timetable and my own agenda. Prioritise getting physically fit which will help my health to make the final few steps it needs to fully return to the energy levels I was at 2 years ago. Legally therefore being forced not to work is exactly what I need. Without this, I think I would put pressure on myself, feeling I had to contribute – how could I be a feminist who lived off her husband when she had another choice. Here I don’t have a choice therefore no pressure to do what in reality I shouldn’t be doing anyhow. 

I do hope to start doing some voluntary work, probably working with some education based NGOs but this I will do in a few months and I won’t throw myself into it but will do a little bit at a time until I feel physically it will be okay to do more. I’m quite excited to have that flexibility!

For the next 48 hours keep your fingers crossed and secularly or religiously hope / pray that our apartment will come through without any issues. That we can continue to live in our naive bubble but that also we can begin to discover ‘real’ life in India. 

Keep your eyes peeled for the next blog – will we or will we not have moved in!??!?! Oh, the tension!

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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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Family

Sometimes with this illness you are faced with challenging decisions that have a direct impact on your health. Those decisions I've noticed usually revolve around having a semblance of a 'normal' life. Sometimes the decision is easy, your health must come over everything, at other times it is more challenging.

I personally feel that having a semblance of a life is crucial to my health. Without it, I believe the slide into isolation and introspection could so easily begin. So every weekend I like to try and meet some friends for a drink at our local pub (bless them, they are happy to go out of there way to meet me somewhere local) or go for a short dinner. This has to be prepared for by a day in bed in advance and often a day in bed the next day. If done properly, there isn't such significant pay back that it no longer becomes worth it.

This weekend however I was shown just how important having a semblance of a life is. I was also shown although this illness forces me to consider it every moment of every day, life continues irrespective. It was my aunt and uncle’s 50th wedding anniversary. They were holding a big party in the New Forest in the south of England. My mum and dad flew over for the occasion. My mum, 50 years ago, had been their bridesmaid.

My aunty, although delighted that I wanted to come, was concerned as to whether it was a good idea. This, however, in my opinion is where having a semblance of a life becomes incredibly important. My husband has taught me in the years since we met just how important family is. He has taught me that being there for your family is one of the most important things you can do. So, I was not going to miss it, I didn't mind if I had to have a week in bed if it meant I could do something for my aunt and uncle that would make them feel happy.

My mum was the youngest of 12 and I have 100s of cousins (only a very slight exaggeration). My identity is greatly influenced by this huge Hogan clan. It was with great sadness therefore that we learnt that my uncle, Liam, the oldest of my mother’s brothers and sisters died unexpectedly on Friday night. My decision to go to the party suddenly became even more important. It was a hard night and day for my mum and aunt and anything I could do to support them mattered. For once, I turned off my need to pace and turned on my need to be there for them.

I don’t know if I singularly made a difference to my aunt's night. I do know her being able to look around and see her children, grandchildren and her niece (who was also bridesmaid to her daughter) will have made her happy. I am pleased that I could be part of that.

Sometimes though we are faced with challenging decisions that challenge us because it is emotionally hard to say no. My uncle will be buried today in Ireland and I couldn't even for a second consider going. It would have involved a flight, a taxi, a train, an overnight with my parents, a drive across Ireland, then the standing at the funeral, a meal with my family and then the reverse of the journey home. I would have collapsed and been a burden on my mum just when she didn't need it. I find it very sad that there was no decision to be made but I will be there for my family albeit at a distance.

So I plan, for as long as I am able, to be there for my family when it counts and when I will be able to plan in advance how I will physically do it. This will mean that I won't always be able to be there for them e.g. a funeral where I would just be a burden. I'm lucky, my extended family are just incredibly grateful for my even expressing a wish to do something, I know they will understand when I say I can't.

I keep returning to a thought that saddens me beyond words. As my husband said yesterday, it is only when you compare yourself to other families that you realise just how supportive and caring your own family is. Yet daily I read stories about M.E. patients abandoned by friends and family because they 'can't come out to play' or because it was felt they should have been there at for example a family wedding irrespective of their health.

A lady wrote yesterday on an M.E. forum that today she won't get a Mothers Day card because her daughter doesn't believe she is really ill, that she is putting M.E. on, her daughter no longer speaks to her. That saddened me so much. For surely, even if her mother was 'putting it on', her daughter no matter how hard it was should still be there for her. As somebody else said, "even mental health patients deserve respect."

So today I am incredibly grateful that despite having to make challenging decisions in relation to my family, I do not have to make them in fear that they will abandon me. This support gives me the chance I need to get back to good health.

30ish of the Hogan clan cousins!

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Mmm, really? That’s weird!

I’ve really struggled to write today. I’ve written something but I hate it so much, I can’t publish it. I don’t know why I’ve struggled so much. Which is amusing in itself, in that what I wrote was all about the weird things that have happened to me through this illness that I just don’t get. Today, however, my words are tripping over themselves and I struggle to type without countless mistakes. I don’t get it though because I woke up feeling good and refreshed for the first time since Sunday. Today, however, I can’t write!

Today, it would appear that my brain won’t establish a coherent series of words to form a sentence. Even when I can form the syntax appropriately, it appears I can’t create a sentence that flows and engages. I don’t get it.

There is so much about this illness that is weird. The one that seems to make fellow M.E. patients quite exercised is our often sudden inability to drink. I’m not talking about an inability to drink without getting embarrassingly drunk but to drink at all! Alcohol as a whole repulses me! Seriously, it’s disgusting stuff. I keep having sips of people’s drinks in the hope that it has passed but oh it is just vile stuff. Yet I can drink a gin and tonic! It appears nothing else but I can drink a gin and tonic! Not a big one and I often have to drink one over two days and certainly can’t have more than one a week but I can drink it! I don’t get that! My husband says it’s because it’s bitter but other bitter drinks slip into the vile and repulsive list so easily, he can’t be right.

I don’t have to drink, I don’t need alcohol to enjoy a night but lord a glass of wine with a friend, a cider on a sunny day how lovely! So alcohol quite easily fits into the weird and wonderful world of M.E.

My mother has laughed about how some people she knows (of course I’m not referring to her many brothers and sisters) as they get older have started to have conversations across each other and she struggles to follow them! That’s me, to have a conversation with more than a few people at a time or if there are loud conversations going on nearby, I lose track of my conversation! I struggle to hear what is being said over the noise.

It’s not like my hearing has gotten worse, oddly it’s almost like it’s improved. It’s almost like other noises become amplified around me, making it more difficult to differentiate the sounds that make up the conversation I’m involved in!

Myself and my husband were driving the other day with the radio on. A song only just started when he changed stations. I quite liked the song so understandably asked why he had been so inconsiderate! He responded with, “high pitched noises really irritate you so you will just turn the sound down!” I’ve always turned up the music in the car so loud that he asks me to turn it down, now it appears I often turn it down so low he can’t hear it. Why? No idea! It’s just another weird symptom in a list of weird symptoms.

Have you ever noticed just how colourful our world is? Have you noticed how bright and cheerful it is? Have you noticed just how attractive shops are? I have. Recently, I can’t but notice how bright and cheerful everything is. How on some days I can cope with it and on other days it makes me feel instantly dizzy, gives me instant headaches and makes me feel thoroughly exhausted. My eyes flick from colour to colour, my eyes become bombarded by lots of messages and I seem to not be able to compute it all into something logical and enjoyable!

Golly, don’t I sound like an old,lady, “oh these modern shops, it’s so hard to work out where to go and what’s in the shop!” Can you imagine what I would say if they let me lose in a nursery school at pick up time – imagine the screaming children, the nattering parents, the bright cheerful educational posters and toys – ohh!

I find I write best in bed, first thing in the morning with the curtains closed. I believe that’s because it reduces the impact on my senses, allowing me to focus all my senses and energy on writing rather than having my energy diluted by other stimulants. It’s an odd one. Why do light and colour affect me so and why does their impact on me fluctuate so much?

There are lots of weird elements to this illness. Not least among them is why do random parts of my body suddenly and for a varying length of time feel sore to the touch. My doctor does have a name for the soreness but I don’t recall it. Some mornings I’ll wake up fine and then suddenly my knee will be so sore to the touch that the duvet is uncomfortable. An hour later it will be gone. On the other hand, the soreness can build up slowly. Yesterday all day my arm was internally getting sorer, by the afternoon it was externally sore to touch, by the evening I could barely hold it up and it was extremely sore to the touch. However, it didn’t keep me awake and today it is fine. I don’t understand why – I’m guessing it’s the neurological elements.

Lambing Live! Now that’s a weird part of my illness. For those not from the UK it is a wonderful programme that does exactly what it says on the tin. It shows lambing live! Why is it a weird part of my illness? It makes me cry! Ahh it’s not just the sweet little lambs, it’s not even the sweet little lambs that die but it’s the unflinching commitment of the farmers, it’s the way they tickle a lamb absentmindedly whilst being interviewed. Apparently easy crying is definitely a neurological element so don’t accuse me of going soft or anything!

So my world is constantly full of weird symptoms, some come and go. Some come and take up residency rights. I think people can get feeling fatigued (we’ve all had an horrendous cold) though perhaps not constant fatigue. I think we can all get pain (we’ve all broken something or some how ended up in pain) though perhaps not constant pain. I don’t think people would so easily realise the other symptoms or indeed perhaps get them.

Once again, I never intend to moan or sound pessimistic. I’ve actually shocked myself about how positive I am overall. I’m not saying I don’t ever find it hard – of course I do, I’m human, however generally it doesn’t get me down. I just want to write so that others understand my illness and my situation better. Rather high-mindedly, I’d love if my words resulted in people getting how somebody they know who suffers from M.E. might be feeling.

So today I shall wait intrigued as to what weirdness my body will throw at me – if indeed anything!

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Needing to be independent

Until I was about 31 I couldn’t drive. I’d never needed to get my driving licence. Suddenly, we were moving to a town where without my own car my independence would disappear and I wouldn’t even be able to work. A mad few months of driving lessons, theory tests etc began. On my in-laws wedding anniversary, August 26th, I passed my test.

The first time I went out in the car by myself, it felt amazing, I felt free! Now my father-in-law has made a sensible suggestion but it is a suggestion that logically I agree with but my heart screams, “No!”

He has suggested I sell my car, I haven’t used it since November and it sits at the side of the road, depreciating. A car needs to be used or it starts to have problems and mine is not used often. So logic would agree, I don’t think I’ll be driving it any time soon so yes it should go.

Selling it however feels like it removes my ability to be free, to be independent. I’m one of the lucky ones, I don’t have severe M.E. so to some this worry will seem frivolous, they no longer worry about losing their independence because it is long gone.

However, I have already lost so much of my independence: I haven’t been in a supermarket since Janurary; I can no longer even walk into town for a coffee; I can’t plan my own holiday and then just wander aimlessly around when we get there; I can’t leave the house whenever I want and go for a long walk; I can’t spend a few days alone when my husband goes away; I can’t plan my career; I can’t spontaneously decide to do something social; and I can’t drive.

Selling my car feels like it might be the start of a slippery slope towards those that have lost total independence. It would only be a monetary decision but it feels like so much more than that.

For me, being independent was always a crucial part of who I was. At 19 I moved to London for three months, I did the same at 20 and at 21 I moved there to do a Masters degree. I knew nobody and had to create my own life, get a job, find a flat. At 24 I moved to Poland with accommodation for a few weeks but no job, no language, no bountiful money and only one friend. Each time I faced these challenges pretty much alone and revelled in my independence. I have always loved being around people but I’ve never really needed them.

Today, I’m faced with needing people, not just loving being with them. It is a challenge to deal with and this is one thing I haven’t quite dealt with yet. I hate to tell people that they need to bring me home because I’m tired now, I hate to tell people to get me things because I can’t do it myself. My greatest hate is asking my husband after his long day at work to do jobs at home while I have spent the day on the sofa: I hate that I can’t do it all!

When you read the M.E. forums this sense of dependence on others seems to have the greatest emotional reaction. People desperately need the support of others but crave their own independence.

When I was well, I never considered the importance of being independent. I never thought about my elderly neighbours, those who were unwell around me, those who through illness or age have lost their ability to be truly free.

I hope when I get well, I don’t forget what the reality of losing some (luckily) of my independence was like. I hope I do something to help others retain their independence. I hope I don’t become oblivious again to those that fear it’s loss.

Will I sell my car? I don’t know – I don’t think it is a decision I’m ready to make.

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I have a cure…well maybe not…don’t do that it will make you worse!

Imagine that you are a loving, caring parent of a well-behaved, hard-working child. You are worried though because school seems to be a real struggle for them, especially where reading and writing are concerned. You notice that they tend to mix up letters when they are tired and struggle to follow lines in a text. How would you feel? Angry, frustrated, worried, alone?

You probably have a feeling that the problem might be dyslexia but you’re no expert so you can’t be sure. You do what any sensible parent would do and make an appointment to see their class teacher.

Imagine then that the teacher, worst case scenario, tells you there is nothing wrong with your child, it’s all in their mind! How would you feel? Angry, frustrated, worried, alone ? Would you think maybe it is all in your mind or maybe it is your child’s fault? Why not, somebody more expert than you has made that suggestion!

What about best case scenario they say that they think your child is dyslexic and that the child will just have to deal with it but don’t give you anything practical to do? How would you feel? Frustrated, alone, confused, worried, angry?

So what would any good parent do when they hear that their child has got dyslexia? They would google it! Now imagine on googling it you read a description of what dyslexia is and it perfectly matches your child. You then read up on how to ‘deal with it’ as the teacher suggested; every website has a different suggestion and often these suggestions are met with derision or anger on another website. You spend hours researching and ultimately end up with no clue as to what you should do although you are determined to do something! How do you feel? Scared, angry, frustrated, confused, alone?

So you return to the teacher and say I can’t do this alone, I respect you are more of an expert than me but I need someone with more expertise than you. They are lovely about it and say they will see if they can find someone. Two weeks later you follow it up and they say they have spoken to everyone in the school and nobody knows an expert. How do you feel? Scared, angry, frustrated, confused, alone?

So, imagine you return to lovely google, it takes seconds to find that there is a state specialist in the next county, although there is nobody in your county. You think, I’ll be efficient and give them a ring so I know they are the right people to pass on to the teacher. They say they are but as you are in a different county they don’t have to take you on. How would you feel? Angry, frustrated, worried, alone?

You get the teacher to make the referral anyhow and wait in trepidation to find out if you will get an appointment. In the meantime you meet lots of people whose children have dyslexia and read treatment surveys that show the official state recognised treatments are recognised to make the problem worse and are not recommended by the real experts. They are treatments based on an old understanding of the problem that has since been disproved!

You further learn that there are treatments that help far more people (though no guarantee of a cure) but they are not available from the state. So now you know your much fought for specialist appointment, when eventually it comes, may actually make your child worse! How would you feel? Angry, frustrated, worried, alone?

You quickly realise the only way to help them is to try as many different treatments as possible, some costing a few pounds some thousands but none of them covered by the state. You are very aware though that these may help your child but reading treatment surveys, you are also aware that they could make them worse. How would you feel? Angry, frustrated, worried, alone?

If parents of dyslexic children were really treated this way, do you think it would be accepted? Do you think it would be fair? Do you think you could cope?

Replace the word teacher with GP and dyslexia for M.E. and that is the reality for all sufferers. Some of us, like myself, are lucky to have supportive GPs (even if they don’t know a lot) but far too many patients are accused of being depressed or anxious and that it is all in their mind. It is not unknown for people to be forcibly sent to psychiatric hospitals or children to be removed from their families because the symptoms are seen as a cry for help from an abused child, there are bed-bound patients who haven’t left the house in 5 years who haven’t seen a GP or a consultant in this time because they can’t leave their house and doctors won’t visit them.

How would you feel if that was you, your partner or your child? Angry, frustrated, worried, alone?

So what is needed? More invested in research both of the cause and a cure. An investment of £1 per patient per year in the UK is not enough to help 250,000 people whose lives are permanently on hold. People who could be income generators for this country, people who could add to the intellectual wealth of this country are being prevented from doing so because M.E. is not only a misunderstood disease but one that is unattractive for investment and for researchers.

I cannot solve this alone, my family cannot solve this for me – for the moment however I have no choice but to try.

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