Tag Archives: fatigue

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.’

The Danger Zone

First off, I must apologise for not writing yesterday. Yesterday was a bad day; in the morning I lay in bed unable to get up wondering whether this was it, was this the moment I became bed bound. It wasn’t though, I rose after a few hours. I was, however, unable to write.

Was this the danger zone? The moment where I feared being unable to get out of bed? I don’t think so. The danger zone is far more benign looking than that. It is so sweet and innocent and relief bringing that it is so very, very easy to forget that it is the danger zone.

The real danger zone, the one where you need MI5 and MI6 to watch out carefully for all signs of potential attack, is a good day. All over the M.E. world I suspect carers and patients are firmly nodding their heads in recognition of this. Those who have never spent time with someone with M.E. may on the other hand crinkle up their forehead in confusion. Why would a day where you feel good be dangerous? Why would it not be a day you luxuriate in? Well yes, we do luxuriate in them but they also scare us.

Post exertional malaise or post exertion relapse (or indeed any of it’s other names) is the spectre that haunts us on good days. Somebody recently described themselves as an energiser bunny on a good day. All they want to do is buzz around the place doing everything they can’t do on a bad day. Cleaning the house and having a shower seem to be close to the top of the list! (Who would have thought that M.E. makes you dream about cleaning the house!). Meeting friends for a drink and staying up late are also high on the list.

Post exertional malaise (PEM) is something everyone has partly experienced. We’ve all been on a wonderful long walk and woken up the next day unable to move. Your muscles have built up too much lactic acid (I believe!) which causes you pain.

The problem if you have M.E is that you build up at least three times more lactic acid than the average person. Plus your anaerobic and aerobic thresholds are significantly lower than a healthy person. As a consequence, it can take very little exertion for a patient to suffer from PEM. For some, it can be as little as sitting in a chair by their bed for 5 minutes. For me, it is any form of mental activity or as simple as sitting doing a jigsaw puzzle for too long.

The PEM twist is of course that it doesn’t just lead to aching muscles but also brain fog (the days where we seem crazy or stupid!), intense fatigue, heart palpitations and for some emotional fragility (I suspect due to just feeling pants!). So the price you pay for stepping into the danger zone can be very high. For some PEM can last for a few days, for some weeks.

On a bad day, it is easy to not do too much – we feel so pants that we can’t really over do it. On a good day it is so easy! Every morning I must plan my day to ensure I don’t do too much. I can’t just hop out of bed and see what happens.

My life is based around activity points (imagine a Weight Watchers system). I’m no expert at pacing and I have had no specialist advise on what to do. This is a cobbled together plan by reading lots and getting advice from my mum and husband. It constantly is adapted as I try and create a pacing system that works for me.

I’m allowed 12 points a day. So on a good day what can I do: shower – 2 pts, 3 x 5 min walks – 4.5 pts, make lunch – 1 pt, write my blog – 2 pts, stretches – 2 pts. Total – 11.5 pts – I try and leave a little behind for unexpected activities (e.g. a telephone call). Look again at my day – how much do I achieve? Do you see any socialising? Do you see any hobbies other than my blog? If I want to do these things, something must go.

I want to meet friends for a drink in the evening for 40 mins in a pub 5 mins walk from my house. How do I do it? Don’t walk during day – saves 4.5 pts, don’t shower (fun when you are going out with friends) – saves 2 pts, don’t do stretches – saves 2 pts. I must eat lunch though and I enjoy writing my blog so that means I keep 3 pts.

So I have spent 3 pts out of my allocated 12, leaving 9 points. Walking to and from the pub will take 3 pts, leaving 6. A pub is a noisy place: lots of talking and music. A pub is also a busy place: lots of colours and people and different activities going on. Plus of course all the socialising with my friends. So my 6 points isn’t enough for 40 minutes. This is an 8 point activity. So I have to go into activity debt. Tomorrow I will have only 10 activity points to withdraw from. As it is, using those 2 extra points may be enough to result in PEM.

So on a good day we try and work out how to enjoy ourselves, get on with life but not do too much so that we end up in the danger zone and consequently experience PEM. We can never fully relax and forget about our M.E. no matter how good we feel.

So when you see us out and about – it is a good day but in our brain we are trying to balance whether it is worth it to spend that extra 2 mins to walk to our favourite shop or whether the enjoyment that brings will not be worth entering the danger zone for.

Despite all of this, a good day brings me a real sense of relief and plants a seed of hope that this is the beginning of recovery. So while recognising it is the danger zone, I can still enjoy it.

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What makes us strong?

I was going to try and improve this, this morning, I don’t like how it reads but I’m not going to. Firstly because it was written when I didn’t feel great, by not changing it, you are seeing me on a bad day. Secondly, I feel worse this morning so I can’t!

Tonight, I’m tired and stiff and sore, I’ve had a sore throat and headache all afternoon and my brain is in a fog. I spent all afternoon lying on the sofa, fighting the urge to go to bed. I tried to read but can’t. I suspect this blog will be finished in the morning, I can already feel my fingers beginning to become painful and my headache worsening.

It is on days like today that it is so hard to remain positive and see happiness in what you’ve got. However, let me review the good things about my day:

1. My mother and father-in-law are looking after me (and my two cats) as my husband is going abroad on business tomorrow: I don’t have to look after myself alone.
2. My good friends Charlotte and Phil took me to the sea, bought me a cup of tea and let me spend time with their lovely son, George.
4. George asked to hold my hand while we walked back to the car.
3. My in-laws were out all day but my father-in-law left me a yummy stew for dinner.
4. My cats came and spent time with me throughout my day on the sofa.
5. My friend, Shelly, asked me if she could come and see me tomorrow despite it being a 90min drive and there was no guarantee I’d be able to see her for long.
6. My mother-in-law brought me tea in bed this morning and this evening.
7. My husband took my much under used but much loved Mx-5 for a drive so that the battery didn’t die.

That is just one day and not a particularly remarkable day. Perhaps some might think each of those little events mean little but put them altogether and they provide the strength you need to deal with the bad days.

I’ve been lucky, I’ve been surrounded by nothing but love and care since all of this began. My mum spent ten days with me the last time my husband went away, my dad researches treatments and regularly emails them to me, my cousins have sent me numerous caring messages, friends from all over the world have expressed their support and strangers I’ve never met have given me their time and energy (much limited) to share their M.E. experiences with me so I don’t feel alone.

A chronic illness doesn’t effect just one person, it effects all those around you. Each person has to do one thing or many things differently to cater for the needs of the chronically ill person.

For me, I don’t think I will ever know how my family / friends feel about my illness in reality, they are always supportive and always willing to help out. Yet it has disrupted their lives, there must be times when they get sick of it, when they would rather not finish cooking dinner for me because I got too tired or drive hours to collect me to bring me somewhere because I can no longer drive. This is a weight that they bear and it must be hard but their support helps to fill me with strength and helps me through the tough times.

For all chronically ill patients, I guess there is one primary carer. For me it is my husband. Over the last six and half years that we’ve been together, we’ve have gone through so much. I always thought we were strong, we must have been to get through them but now ill health has shown just how strong we are. His constant love and support (though I do have to remind him to vacuum!) enables me to do what I need to do to keep going, he enables me to remain positive. He makes me feel that no matter what happens to me, there will always be an ‘us’ fighting it together.

It is so easy to forget about the chronically ill – we are boring company at times, we can’t always guarantee we will follow through on our promises but remember you are part of their foundation of strength, you are essential to a chronically ill patient. Remember too though, we might be ill but we can, in our own way, be there for you too – we can be part of your foundation of strength.

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