Tag Archives: #mecfs #spoonie #health

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 It is well out of date but I don’t think it matters.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.

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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.’

I Can Hardly Believe It Myself

Ok, so it must seem like quite a long time since I wrote a blog: you are wrong. I’ve written lots of blogs recently.

“What?” you say, thinking how could such an avid follower of What Will Happen To Me have missed said blogs. To be honest, I have written lots of blogs, I just haven’t published any of them. Our life has been such a tumult recently that each blog posting I wrote just didn’t feel right so I would walk away, to return to it again with fresh eyes. On returning however, I would realise that what I had written now felt even more not quite what I wanted to say so I would begin another and another and another. In the end, none were published. At this moment, I have every intention of publishing this blog – through hell or high water. Let’s see.

On Friday, I move to India (crikey!) – my husband has already been there a week. Who would have ever considered that possible? Only 12 months gujarat-leicesterago I was limiting myself to a few thousand steps a day at best and was spending at least 18 hours a day in bed. We had no idea whether my health would ever improve – although improve it eventually did. Now, 12 months on, I very shortly will be living in India. It is a miracle that I will always remain astounded by.

Re-reading old blogs recently, it was obvious that within the genuine positivity and determination to find a way out of my ill-health there was also a desperate voice whispering – “what if, what if, what if it will never happen?” The reality today is that I am still finding my way out of my ill health and perhaps will continue to do so for many years to come. However, re-reading my old blogs also showed an absolute determination to grab life and experience as much as I possibly could. I wrote about how I had no idea about where my life would now go or what I would now do but how that didn’t frighten me but rather filled me with excitement and pleasant anticipation.

Back in those days of new found enlightenment as I began to emerge from my illness, I certainly had no concept that one day (very, very soon) I would be packing up my bags and moving to the other side of the world. Although, to be honest, the idea of moving abroad was nothing new. Myself and my husband had discussed it for many years. I had slowly been inculcating him into the cult of ‘expat’ – we just hadn’t done anything about it – then I became ill.

I returned part-time to work in October 2014 and slowly worked my way back to full-time in January 2015. Being a teacher is the hardest work, there is no time to sit back and catch your breath (just a little important for a girl who suffers from Dysfunctional Breathing Syndrome). You get caught up in the job and the students and silly Ofsted requirements and it gets hard. Really hard. Especially if you are still not fully healthy. I probably should never have gone back to work full-time but how was anyone to know that until I gave it a try? Long before India came on the scene, I was struggling and not willing to really accept that I was.

The opportunity to move to India therefore could not have come at a better time. Six months earlier or six months later probably wouldn’t have worked. Six months earlier I wouldn’t have had the chance to return to teaching and see if I was right, that I had completely lost the love of it. I would have walked away from a career that I had been in for 12 years without knowing whether I really wanted to walk away from it. Six months later, I would possibly have worked my way back into ill-health or learnt to hate my job so much that I failed to give the students what they needed most – a decent education. I would consequently have possibly moved to India under a dark cloud of failure.  If indeed, I was even capable of making such a move.

India, therefore, came at the perfect time. I had returned to teaching long enough to know that I was no longer willing to buy into a lot of the nonsense that surrounds it. I had been back long enough to know that the only reason I liked teaching in the first place was being in a class full of students.

For the first time in my adult life, I am completely unemployed and while that feels strange and slightly uncomfortable, it is also a relief. My time is my own, I no longer have to dance to somebody else’s fiddle. I am no longer in a job I had, cropped-unemployed-not-happywith the exception of teaching classes, grown to hate. I am now in a position to walk comfortably away from a career I had for such a long, long time loved. Six months ago, walking away may well have broken my heart – today I simply miss the people I worked with and the children – nothing more.

My headteacher (a remarkable woman) has been kind enough to release me in the middle of a term so that I don’t even have to continue until May half-term. She was smart enough to realise that the stress and physical demands of moving halfway around the world made working impossible. Her kindness has allowed me to start my husband and I’s new adventure more or less together. Her kindness has enabled me to start once again to really take care of my health so that I will get 100% better.

So, this blog (which is definitely getting published) is the start of my adventure. If you want to know the details – where I am going, why I am going you are just going to have to subscribe to my blog via your email address or WordPress account. You can also follow my twitter @kironside78.

I hope to regularly blog again – I will have no excuse – I will definitely have the time. My aim is to (just like I did when I was ill), simply reflect on my experiences: the joys and the challenges of living in India. If it helps somebody else about to make such a journey or simply provides an interesting read over a coffee, I will be happy. 

What Will Happen to Me? Living Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Breathing New Life into an Old Dog

This, I am afraid, is a long one!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

https://www.youtube.com/watch?feature=player_embedded&v=wS7CA2aRPYI

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

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

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

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

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

Diaphragm:

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

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

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

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

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

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

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

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

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

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

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

 

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

Doctor, Where Art Thou?

I started my last blog with the following lines:

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

How much are these people worth to the UK economy? 

uk-economy

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

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

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

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

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

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

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

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

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A Little Perspective Can Be A Good Thing

On Easter Sunday I was forced to walk much further than I wished, through no fault but my own. As a consequence, today I am too exhausted to move and in too much pain. The distance I had to walk beyond what would have been okay was about 0.2 miles. Today I have lain on the sofa watching TV or been cuddled up in bed with my iPad. I’ve had to take extra painkillers and have had to let everyone else look after me. Today I feel pants.

Over the last few months it is possible I’ve watched more TV than I have ever done. I’ve watched so much TV there is never anything on BBC iPlayer I haven’t seen. As a consequence, I’ve watched lots of random documentaries and TV news.

A thought continually occurs to me as I watch the news about events in The Crimea, Syria, Central African Republic or programmes about aid and developing countries all over the world: people in these countries too must have M.E.

M.E. is not a ‘Western’ disease. It is not a disease experienced as a consequence of over development, obesity or the way many live in the ‘West’ today. It is a disease that has existed for centuries, with records showing it in nations all over the world. Indeed my blog has now been read in over 45 countries including many that would be considered far from being ‘Westernised’ in a traditional sense e.g. Nepal, Angola, Egypt, Pakistan and Romania among many others.

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There is no question then, in my mind, that there are M.E. patients in these countries. They may not call it M.E. or CFS or any of the multitude of names that it has been called. There may be many thousands who go undiagnosed. Diagnosis however does not create an illness, it simple defines it and puts a pin in what it is.

Where my problem today is that on Easter Sunday I was foolish enough to go for a walk without considering how to get back to the car, Syrian M.E. sufferers may be trying to work out how they refugee to safety. Their problem is not getting back but getting away.

Somebody in a recent forum laughingly mentioned how her and her boyfriend were watching a zombie movie and she said to him, “why did they do that? That was stupid! If that was me, I would have gone running out and blown their heads off!” Her boyfriend then reminded her that she could no longer walk, never mind run but perhaps they could pimp out her wheelchair to make it possible.

What happens in the real world when you can’t have a wheelchair or any form of transport to get away from something life threatening to you and your family? What happens when the only form of transport available is your feet? What happens when you know that your feet cannot take you to the door of your house, never mind take you to safety? What happens when you are in so much pain and your brain is so cognitively confused that you struggle to even understand what is going on, never mind make life changing decisions? What terrible decisions do families have to make when time and circumstance are firmly against you?

Not everyone lives in a war zone. Like me, many live in a world of safety. My thoughts however still turn to those who live in a world where M.E. is even less recognised than it is in the UK; a world where access to information or supportive forums does not exist; a world where the government doesn’t provide a safety net for the permanently disabled. At least for many sufferers in the UK and the USA, even if your family and your doctor don’t believe you, there is a world out there that is still willing to support you i.e. the internet.

What happens when you as the woman in the family are expected to cook and clean, help on the farm, perhaps being involved in addition in some cottage industry so that your kids can go to school – what happens when you suddenly come down with M.E. symptoms?

Surely, in understandable ignorance, you do what many of us in the UK did, you fight on through the fatigue. It is only tiredness. You think it too will pass. What happens when you start to feel so much pain that some of your daily duties become impossible? What happens when the glare of the sun causes your eyes so much pain and creates such horrendous migraines that you can no longer help outside? What happens when the pans to cook dinner for your family become too heavy to lift? What happens to you and your family? What happens to your child’s education?

What happens when you live in a world where nobody understands what is wrong with you? What happens when you go to the doctor (if your family can afford to send you) and they at the very best suggest your problem is psychiatric (they at least may have an old understanding of M.E.)? But what happens when you go and they have no idea what is wrong? What happens when you go home and you keep on pushing yourself in the hope that it gets better? What happens if you go home with the stigma of a psychiatric illness hovering over your head? What do the village think? What happens to your standing in society? What happens if those in your family or community consider you malingering? What happens?

Intuitively, I think I can answer some of these questions. Through knowledge or experience, I simply haven’t a clue. I can only assume that the experience of M.E. in such worlds is catastrophically different. It is a recognised fact that M.E. can be fatal, I can only assume for many such patients it is.

Once after I apologised for moaning about being in pain (before I became ill) to a friend who I knew in reality must be in far more pain than I, my friend told me – her pain was no greater than mine. Everyone has their own perception of pain and what is a 10/10 pain level to me feels as bad as anybody else’s perception that their pain is 10/10. I do believe however perception differs fundamentally from perspective. Although at times I have experienced pain in my perception as 10/10, a little perspective on my situation makes it clear that the same level of pain is not as easy to handle when you are in an environment which does not enable you to rest or access treatments that support you.

It is disgraceful that I was told twice last week that there was no medical professional who could support me through my M.E. but my reality is that I am safe. I am in a family where I do not have to work for the rest of my life if this is a situation my illness forces me into. I am not saying it would be easy but it is possible. My greatest trauma this week was taking an Easter Sunday walk with my family that was too long.

In the back of my head, I have a plan for what I would like to do to support M.E. patients in countries where there is currently no medical knowledge or support for this illness. As to the means (both financial and practical) to go about it, I unfortunately have no clue. Perhaps for the moment I can only allow my knowledge that there are those in a far worse situation than I to help me stay positive, to stay grateful for what I have.

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