M.e. (Simplicity sold separately)

I found myself truly upset reading an article in the Guardian today ‘

‘Chronic fatigue syndrome patients’ fear of exercise can hinder treatment’

and it has inspired this post.

As a woman I now have the ability to live daily life, but I’m aware my M.E. will never really leave me.

As a 14 year-old child my only fear was that I would never get better.

I have to be careful how much activity I undertake and quite frankly the term ‘exercise’ is a luxury I undertake as often as I can but the word itself does not really come into daily life.

This article may not seem negative but in its ardent simplicity it promotes a few terms that we should all be cautious in listening to.

First, to suggest a ‘fear of exercise’, even inclusive of graduated programs and CBT, is patronizing and hurtful to all and any sufferers of the condition. Exercise suggests running around but getting better for most of us involves a gradual increase in what I would much rather call ‘activity’. Anything from sitting up in bed to reading a book comes under various levels of ‘activity’. For myself, reading began as a high-level activity…It’s taken me over 6 years to say I can run again, my doctor told me I never would.

Fear, as my second point of consideration, is something those without M.e. may readily apply to us. The thing here is, they don’t know. Any fear is not of exercise but of relapse. Imagine one day you were walking to the shops and the next day you came down with the flu. Imagine that happening every time you walked a little too much or exerted yourself too much. Imagine all of the symptoms of flu and more being able to destroy months of your life. As severe as it sounds, this is the truth of it and so many people disregard that. For some, to encourage high levels of activity too soon is potentially very harmful so it is not that we are afraid of ‘exercise’, we are afraid of not being able to have bodily ‘activity’ anymore. By which I mean M.e. can get bad enough that you are bed-bound and in so much pain everything a normal person experiences in a day is gone.

When you finally build-up you celebrate but losing that fear of ‘not-being able to again’ is not an option or you’re right back at square one.

Maybe we don’t know what M.e. is, I do not presume to know even myself, I could only tell you it can be like a daily hangover some days and not others.

What we do know however, is that any fear can keep us going, can help us reach our goals. But that fear is never of ‘exercise’.

The sense arrives near the end of the article with ‘fear was understandable given the nature of the condition but that people with ME often did too much on days when they felt the symptoms less, hence the importance of experts guiding them through a gradual increase in activity.’

It is important to believe you can but when you have an illness which has no known cause but many symptoms you can be met with a daily barrel of words that hinder any hope such as ‘lazy’ or ‘selfish’. People who suffer chronic illnesses are neither and nor do they want to be. It doesn’t matter what you have, the fact is we are human beings whose day-to-day lives are affected by something we don’t even know about ourselves and maybe we can’t explain why we are in pain, why the light is too bright or why we don’t have the energy to do much, if anything at all, but we can explain to you, as over 250,000 people in the UK alone that this is very real.

I do not disregard that this study holds some merit, or the fact that there is a study at all with aims to finding some conclusion, what gets me is that there are too many articles promoting the labels ‘lazy’ with the terminology they use and not just in the newspapers but in numerous places online.

If you want to listen to anyone listen to me, or the lady with M.e. who responded to the article, or any one of the M.e. sufferers who will tell you what it’s really like and that our only fear is that the chronic illness that is not terminal will take away anything more than a mere existence.

Awareness goes along way so if you read this, please share it. If you don’t want to share it at least think about what I’ve had to say.

From an M.e. sufferer to a world of people who could learn something new about an illness so hidden,

Daisy x

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