Category Archives: M.E.

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 It is well out of date but I don’t think it matters.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

I Haven’t Given Up!

i have been absent and absent for far, far too long! I have been longing to write a post but for reasons which should become evident in the close future, I have been unable. I see this blog as the place to be honest and transparent. This I cannot currently be. Fear not, soon, very soon I will be!

So forgive my silence – for it has not been through deliberate neglect or accidental negligence. In ten days or so I promise to write again. 

The Half-blood Prince

Last week, one of my amazing students guest blogged on this site. Her poem, about her father who she feels does not care and doesn’t want to spend time with her, got an amazing reaction. More people started following my blog in one day than have ever done; more people liked the blog than any other blog. People posted amazing comments here and on other site1_30032010-07-Julia-Bowman-siblings-at-whitman-webs where it was posted. How amazing that a 12 year old was able to sit back and realise how much people appreciated her words!

Well as promised, here is the second instalment. Also about split families but from a very different perspective. This wonderful student just quietly gets on with school and one would never know the deep thoughts that are inside – thoughts he does not often share. 

The lesson I have learnt from this two-part experiment into giving students the freedom to express whatever is in their heads – is that – perhaps I need to do it more often. Perhaps, young people need to be given the chance to just release everything that is inside in them. We have such high expectations of young people: behaviourally, academically, emotionally – perhaps giving young people the time to vent all the worries and concerns that such expectations bring is not only healthy for them but healthy for us. Giving adults the chance to recognise just how capable young people are but also just how fragile and contrastingly strong they can be. 

My Life As  A Sibling

As many people may know I have a brother and a sister but you may have never known that they were half brother and sister.

Wow I kind of feel awkward about talking about this but I feel that this is a subject I feel that I may need to express more (talk more about than keeping in my thoughts all the time.)

I feel a little lonely to know I have a half brother and sister because they have each other but I don’t really have that interaction with them since we live so far apart. Sometimes (leaves the computer to express feelings a bit) just sometimes I feel that they don’t even exist as a half or actually a brother or sister.

I can’t even believe that I’m actually expressing my real emotion towards this and that’s a lot of confusion and a little bit of frustration. The reason for this… wow I’m sorry but this is a lot for me to say because, because, because I feel like I don’t even exist to them half the time because I rarely see them (which means the life to me sometimes) I still feel that I’m the odd one out or the one that’s different to the others.

Wow I can’t believe I haven’t gone away from the computer yet but I kind of feel proud that I can say, I may not have a brother or sister but at least they are related to me (a half brother and sister). So where I get most emotional is when they come up then they go, I feel that it’s like my favourite thing or toy or person hassiblings_logo_by_rusc_14-d3c7acu drifted away from me and all I think about is that I wish they were still with me but alas that will never happen which makes me so distraught.

I hope that one day, one day that we will be reunited as a full blood family (they will be no longer half but a full brother and a full sister.) Anyway, back to what I really wanted to talk about- how it feels to be the youngest of the 3 and also how my life is an only child almost all the time. Being the youngest of 3 is quite cool but it means that I will be the last to finish school which might be good because my sister said when she finishes school she might give me her revision book which I thought was really nice of her. I’ve sometimes looked up to both my siblings to think wow this is what I’m going to be like some day and how cool it is to have such generous family.

Ok, now I think is best to talk about the real thing I wanted to clarify with everyone out there – my life would never be the same without my brother and sister, sure they aren’t around that much but they care about me and I care about them. I think that this is the thing that matters the most in our little trio. So if I never had my brother and sister to be there for me and encourage me, I don’t think that I would get anywhere and I mean anywhere in life

Please like, share and comment on this blog. Give the brave young man who wrote this the chance to also feel that sense of accomplishment that comes from lots of views, lots of likes and lots of comments. Let’s show him that he too is worthy of people’s time and attention. 

Inspiration Where the Daily Mail Says There’s None

In my last blog, I said I would share some inspirational writing from 12 year olds that I teach. 

Under the new English National Curriculum, introduced this year, a new rather vague requirement is that children should be taught to ‘Write for Pleasure’. Now one has to question the concept that it is possible to teach somebody to write for pleasure. Sure, I can teach them grammar and spelling and extend their vocabulary. Sure, I can introduce them to inspiring authors. Sure, I can give them the space (in a curriculum that doesn’t really lend itself to space!?!?) to give them the time to write. Surely however, it is impossible to teach a child to write for pleasure.

In my attempt to investigate whether this was possible, I set as an experiment a writing task for my middle ability Year 8 students (aged 12 – 13). I told them they could write about anything, in any style, in any format and there were no length restrictions (i.e. it couldn’t be too long or short). I was a little dubious as to what I would receive.

Lesson One then for me is to never underestimate my students. They may still be children but they think deeply. They may still be children but they often crave an outlet for their thoughts; a safe environment where they can say what they like and know they won’t be criticised. Of course, some saw it as a great excuse for scribbling down a few hasty, unthought through lines, knowing full well there was nothing I could do or say to them about it. Most, on the other hand, put all they had into it. The results were heart-warming, heart-breaking, thought provoking, intelligent, wise.

Lesson Two therefore – just because somebody is young – part of the ‘barbaric horde’ (if you believe the Daily Mail) – this doesn’t mean they have nothing to say that is worthwhile listening to. Perhaps if we listened more to young people and less to the jaded politicians or the drama queens of tabloid newspapers, we would realise that young people are a stand up bunch of citizens that should not be tarred with the sam20140719-095038-35438347.jpge brush just because some decide to do stupid things. Would you call me a yob just because somebody 200 miles away (of a similar age) broke into a house? No, so why should we do that to young people.

The poem below was written by a lovely young woman about her difficult relationship with her father who she doesn’t see very often. You could question why these would be on my blog but my blog seems to have become a source of inspiration for many and a source of motivation. The piece of work below and of the student I will publish next week – do just that. For me, they put many of my worries and concerns into perspective. They help me to realise that while things can be difficult, I am lucky to have my wonderful supportive family. I am lucky that I never have to question whether I have their trust and love.

What’s Bothering Me?

Last night I got a text from my dad,

Not often does he text so I knew it was bad.

It contained the harshest thing I had ever seen.

I am cancelling when I am supposed to see you.’

See his children, not too keen,

I cried and I cried,

To all the goodbyes.

Never before had I witnessed this.

He is like an evil snake with a charming kiss.

I saw him last a year ago

Since then we have gone from friend to foe.

For some reason I can’t get over the fact

That his family orientated skills have lacked.

Dealing with this is not easy

Sometimes I just want to be free like a bee.

I carry on reading, reading, reading.

If I was bleeding, if I was needing,

I don’t think he would care.

Some of you may think, aw no

But don’t worry, it’s not rare.

I still wonder why.

But till now all I can do is cry, cry and cry.

Lesson Three Her poem is a reminder to me that in my day to day job, I can provide students such as this with a sense of security and continuity. No matter what happens at home, staff in school / rules in school / behaviour in school will be consistent. I can provide the confidence that no matter how difficult a child might make it for me, I will not back down. I will not refuse to give them my support and my care. In reality of course, no matter what it sometimes seems, no child is deliberately difficult – life has been made difficult for them and they react as they have been shown how to best.

Although not a parent, if I was – I hope this poem would remind me that no matter how difficult things get for me; no matter how challenging my relationship with my child or those in their life get – walking away from my child is probably the wrong thing to do. A child needs to feel love – that is really all they want – they just want to be loved unconditionally. Children can survive abandonment and mistreatment but few survive without battle scars that stay with them the rest of their life.

M.E. patients rightly cry out to their friends and family not to abandon them – young people have a need that is no different.

It would be wonderful to know what you thought of this poem. It would be amazing if the author (a 12 year old girl) could know what you think. How does it make you feel? What does it make you reflect on? What might it make you want to change in your life? 

Please also share this blog. Can you imagine how she will feel if she knows people thought her poem was worthy of being shared by others!??

Unbridled Expectations

One cannot understand anything unless one is determined and indeed wants to understand. It is easy to put on the blinkers and only look in the one direction you want to. For months that one direction was denial. Denial that I was ill, denial that I had to accept the limitations that this illness put on both my body and life.

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There were times when I eased the blinkers off slightly, looked around in fragile acceptance before quickly jamming them back on and once again refusing to look in any direction other than that where it appeared I was in full health.

Over time the clasps on the blinkers aged and all it took was a gentle knock before they fell away revealing my true situation. I was very ill and I had to accept all the limitations this illness placed on me or I would never get better. Refusing / being unable to accept this for so long had had a detrimental impact on my health. Being able to accept this enabled me to stabilise and then to begin to make very slow progress.

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As regular readers will know, early September I was rediagnosed and given a new treatment plan all connected to breathing correctly. The change in my health was exceedingly rapid. The true joy came not in my improving health but the corresponding improvement in my lifestyle. No longer did i have to seriously limit time spent with friends, no longer could I only walk down the road and back, no longer did I experience the debilitating pain I had dealt with for 9 months. Once again I felt free and invincible.

Invincibility however does not prevent the acquisition of new blinkers, stronger ones that won’t age and fall away so easily. Where previously the blinkers had prevented me from seeing just how ill I was, these new blinkers prevented me from realising that I am not super woman: there is a limit to what I am able to achieve.

I was so determined to relish my new-found freedom that I forgot the basic fact that I had been / was very ill. It is no surprise therefore after a few weeks of going to the gym every day, socialising with friends and finally towards the end returning to work that I began to see some of my progress slip away from me. I am still a million times better than I was even 3 months ago but I am not as well as I was a month ago.

My husband said he feels like it is back at the very early stages of my illness where I had no clue how to handle it. Where I was still blindly believing that I could exercise myself to good health, that staying out with friends for too long was okay because being social was more important.

This time however it took us both some time to realise that I was messing up. How could I be getting it so wrong when for so many months I had so carefully and so effectively managed my illness? How was it possible that the lessons I had learnt from that time could be forgotten so easily?

The answer is painful but relatively easy. I allowed myself to believe nay told myself I was no longer ill. While I still believe it is likely that I am no longer ill, I now realise that the process of recuperation doesn’t happen over night. The person who is declared cancer free is not one day ill and the next day totally fine. The person who is declared cancer free has many months of recuperation in front of them. With no one to direct me however I didn’t even consider this reality. I felt fine so surely that meant I was fine!

It is now I think about all those naysayers who read my blog and then warned me that by increasing my activity level I was inevitably going to make myself bedbound for life. That trying to do more was simply wrong. I think about them now not because I totally agree with them but rather if I soften their warnings a little – they are right. I have no doubt that unless I continue to carefully manage what I do, I will end up continuing to go backwards until I eventually reach the level I was six months ago or god forbid worse. Exercise and activity is not bad – in fact it is crucial to my continuing health. Unbridled expectations however are exceedingly dangerous, far too dangerous to dare go near.

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Once again I wish there was this magic person who could look at my life – how much work I have to do, how much exercise I want to do, how much socialising I want to do and how much down time I need and help me pace myself. However, given this person didn’t exist when I was desperately ill and floundering wildly, I very much doubt this person exists for me now. So I have put my husband, my family, my boss and all my friends on Karenwatch. Their job: spot when they think I am overdoing it and order me (not advise me) to stop, reduce what I am doing – think about it a bit more.

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:

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. 

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. 

Listening-Island-Cartoon

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? 

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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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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.

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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

Frustration

At the very top of my must-go-to bucket list is Iceland. As a young child, I watched a TV series set in Iceland all about a young boy, his family and very importantly his horse. I don’t recall the name of this series or indeed even the storyline. I do recall however quite vividly – the landscape. Even as a very young child I was able to appreciate that Iceland was a place of splendour unlike anything I had ever seen before. I was determined to one day visit it and see for myself the place I had fallen in love with as a seven year old.

Over the years my ardent desire to visit Iceland did not wane. As I learnt more about the country, reasons to visit it just kept piling up. I wanted to bath in the Blue Lagoon, a spa in Reykjavik heated naturally by geysers. I loved to ride so couldn’t believe it when I learnt that the Icelandic pony not only could carry vast weights but also had an additional gait between trot and canter. I read about the beautiful fjords, 24 hour daylight in the summer and its tiny population. Everything I learnt made me want to visit the country more and more.

It was therefore with great excitement that myself and my husband started to plan a mid-term break in Reykjavik for February, 2014. We were going to go horse-riding, trekking across lava fields and glaciers, whale watching and swim in the Blue Lagoon. We even hoped that my best friend, Sarah, would join us. Five months prior to our departure date I ended an ordinary working Friday with an horrendous cold and the rest as they say is history. February mid-term break came and went and we didn’t fly to Iceland. My dream seemed to have been crushed.

Having finally decided to go on holiday, eight months after becoming ill, we chose to go on a cruise taking us to Norway and Iceland. There was more about the realities of holidaying with M.E. in an earlier blog. It seemed therefore that my dream of visiting Iceland was going to come true. Yes, it would be a modified version of the dream but it would at least, I felt, affirm whether or not this dream, idyllic place was all that I imagined it to be and whether it deserved its place on my bucket list.

In Norway, I had perhaps done a little bit too much the first day so on our second day I had to be careful and only disembarked for a brief coffee. I wasn’t bothered though – we were in beautiful surroundings so quietly resting looking at the view was acceptable.

Iceland, however, was all that I dreamed it would be. Our first stop Akureyri, in Northern Iceland, was absolutely stunning. One of Iceland’s largest towns (with a population of 17,000), it was surrounded by the most beautiful of mountains, still capped with the winter’s snow. All I wanted to do was get off the ship and wander around starring at these stunning views.

I rarely felt really frustrated with my M.E. but that day I could have cried. My mind and my husband were telling me to be careful but my heart didn’t give a damn, it just wanted to forget that the body it was attached to was ill. Despite a multitude of warnings from my husband, I insisted we climb up numerous steps to a church and then higher again to a botanical garden. I ignored all the warning signs that I was beginning to struggle. So what if I had to stop and rest continuously and was finding myself out of breath continuously – my heart was telling me that that was okay, I wasn’t pushing myself too much.

In total I probably walked about 2 miles, to and from the ship. I just wouldn’t allow myself to believe that that was stupid. Prior to going on holidays on a good day I could walk a mile. Why I allowed myself to believe that what I was doing was okay is beyond me! Or is it? The reality was I didn’t want anything to spoil my dream. Iceland had been my dream for almost 30 years, allowing myself to restrict my exploration was too heartbreaking to actually do.

Of course by the time I was returning to the ship, I was in a state of near collapse. Every couple of feet I had to sit and rest. Moving one foot in front of the other was incredibly hard. The gangplank into the ship was not unusually steep but that day, I had to literally drag myself up it, hanging onto the railings for support. Three hours after landing in Iceland, I was back in bed, a location I stayed in more or less solidly for the next 20 hours.

It meant of course that on our second day in Iceland, I could do little more than stare out of the window at the wonderful town we had found ourselves in. There was no way that I could physically go ashore. My husband tendered ashore alone, to wander around my dream country without me.

Normally, my frustrations don’t get in the way of my doing the right thing. Normally I am quite good at balancing what I want to do with what my body can cope with. Normally I am quite good at putting aside my desires for the good of my health. This however was an occasion where I almost felt like I had no control over the situation, I was going to do too much because I wanted to and well to put it simply that was that. Of course, the reality is that because I allowed my desires to overtake my health needs, I therefore lost a day in my dream country. If all I had done was wander a little around the first town, drink several coffees and admire the view then surely on my second day in Iceland, I would have been able to do the same and not have been left behind while my husband experienced my dream.

It is undoubtedly normal to feel frustrated. How can you not? Usually, suddenly and unexpectedly everything you understood about who you were and where your life is going is ripped away from you. Suddenly you are expected to manage every second of every day and constantly assess and reassess how you are feeling, should you rest or is it okay to continue. Of course it is normal to feel frustrated about what you might view as a lost future.

The Sochi Winter Para Olympics were on the first winter I was ill. I remember watching these amazing paraolympians do the most amazing of things: slalom blind down a course that would have challenged the best skiers; war veterans who had lost both legs ski jumping. It was incredible. These people had been through hell and back and yet they were brave enough and strong enough to now be competing for their nation. It seemed incredible. I do remember though that it also frustrated me greatly.

I have no doubt that should I have gone blind or lost a leg that I would not have been skiing for Ireland at the Olympics. Pre-illness I was in no way sporty and that surely would not have changed. What frustrated me however was to think that even if I wanted to, even if I suddenly had the desire to go ski jumping, I couldn’t. It seemed unfair that these people were able to tackle their physical disability and win their battle with it.

I, on the other hand, no matter how much I desire to ski down a daunting slope, while I have M.E. won’t be doing it. There is no getting around the disabling factor of fatigue and PEM. There is nothing you can take that will prevent you from getting it. Strenuous exercise of any description can cause you irreparable harm. The limiting nature of this I find very difficult to deal with. The deep frustrations it cause me never go away. Just usually I can suppress my desire to do something by considering the repercussions.

Dealing with your sense of frustration in a sensible way is all about learning to be ill. For me in a way it is about sharing my sense of frustration through my tears or through my words so that those around me understand why I want to push so much when theoretically I am ill. Allowing my frustrations to win over what I know is sensible is never going to be the right thing to do.

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You will come across lots of people who will argue that you should abandon all your dreams and hopes. This disease means that you will never live your life again. That this disease should be what defines you. I, personally, cannot see how that can in any way help your mental health. I believe recognising that certain things frustrate you means you still have dreams and aspirations that go beyond simply being ill. I believe that these can provide you with hope and the motivation to keep on fighting this disease. I need something to get me up in the morning and to make me smile when all I want to do is cry – without dreaming and the inevitable frustrations that will follow, I do not know what would keep me going.

Of course who am I to say how you or anybody else should feel about your illness or feel about your frustrations but who can argue against the power of positive thinking.

On a daily basis I have to tackle the limiting nature of this illness. The old me, who never really let anything stop her, is still there so of course at times I just want to scream at the world and ignore all the sensible advice my mind and those around me give me but I have learnt to ignore them at my peril.

What frustrates me must simply go back into that box entitled, ‘Not for Me, Just Yet.’ That doesn’t mean I should give up on my dreams and wishes, rather it means I shouldn’t let my inability to do them depress and anger me.