Tag Archives: Breathing

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 It is well out of date but I don’t think it matters.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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Dahi Handi – the Yoghurt Pot Festival

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dahi Handi Pyramid – my video!

Dahi Handi – professional video

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

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

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

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

Damn You, Kazza!

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

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

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

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

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

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

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

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

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Note water gushing over the top!

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

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

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

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

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

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

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

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

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

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. 

Officially, I Am Back to Work Full-Time!

As of today, I am no longer on sick leave. I am officially 100% back to work!

While it is a relief to know that I can fall of my bike and break a leg and still get sick pay for the few weeks it takes to be able to drive again, it is more a relief to know that surely today signals not the end of my illness but certainly an auspicious moment on my road to recovery.

It is hard to believe that it was only November 2013 when I was struck down by an illness that was initially and perhaps ultimately unexplainable. Suddenly, all that I knew – all that defined me was gone! A little dramatic perhaps but certainly true.

The discovery last August that my greatest problem appeared to be my breathing and not M.E. (as previously thought) was understandably a massive relief. My rapid improvement from that day forward has been exhilarating. To do the things I used to do and to discover new things that I can now do is life fulfilling. I can now say that I can walk 11 miles (with 2 pub stops on route), I can Husky Mush (beginner style), I can do Kinesis and I am learning Yoga; this is fantastic.

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All of life’s experiences are perhaps not worthless but certainly less rewarding if you can’t say that you have learnt from them. So what, pray tell, have I learnt over the last 18 months:

  1. I was extremely lucky: lucky that I didn’t have M.E.; lucky I had a friend who made medical recommendations; lucky I had a specialist who was willing to question the accepted ‘truth’ that I had M.E.; lucky that I won’t be sick for the rest of my life. I am simply lucky.
  2. I am more determined and stronger than I ever imagined I could be.
  3. Being determined to do something, sometimes largely consists of admitting you need help.
  4. If I could deal with this illness, I can deal with anything my future throws me.
  5. Life is for living and not for passing through.
  6. Doing ordinary everyday things should be seen with as much joy and excitement as more unusual things are.
  7. Friendships and family are crucial to my emotional and ultimately my physical health.
  8. I have an incredibly powerful friendship and family support network.
  9. You are not brave when you are ill; you are simply getting on with it because what other choice do you have?
  10. It is very easy to over-estimate what you are capable of on the road to recovery but it is equally easy to allow your fear of doing too much allow you to under-estimate your abilities.
  11. Work is important to my self-worth but it no longer needs to define it.
  12. Work-life balance is too often ignored: it is vital to continuing my renewed health.
  13. There are those out there being wronged by their families and friends and sadly the medical profession. Those who really suffer from M.E. are, more often than not, not given the respect and access to treatment they not only require but also deserve.

I hope I will also remember those M.E. patients who offered me such unconditional support. I hope I will not forget what they continue to suffer day to day. I hope I can continue to inspire those around me to be open to people’s illnesses and not to question people when they say they are suffering: to accept and offer unconditional support in return.

If I can remember half of these lessons, then I will emerge from this illness when I eventually completely recover (hopefully in the next 12 – 18 months) as a better person: a more fulfilled person.

This is not my final blog: I hope far from it. I will however have two guest bloggers over the next few weeks. Two students from school who wrote so personally and so inspiringly I wanted to share their words with my readers. If a 12 year old can inspire us, surely we can all do whatever we want in life, nothing can stop us. 

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:

diaphragm

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. 

You Can’t Be Serious?! Really!?

Well now, that was unexpected.

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

not-interested

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

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

A_Colorful_Cartoon_Fatigued_Woman_Needing_Wound_Up_Royalty_Free_Clipart_Picture_110102-173395-212053

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

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

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

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

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

 just-breathe

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

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

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

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

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

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

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

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

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

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

hope