But you don’t look ill..

me-cfs-ribbon-figures_m7t2Physically I am very lucky; despite my grumbles my natural body shape falls within the bounds of curvy as opposed to noticeably overweight – even post-pregnancy. I eat healthily and try to avoid stress as much as possible because stress exacerbates my condition. All of which lends itself to the physical appearance of a healthy young woman.

But I’m not. I’m anything but healthy. ME/CFS and Menieres disease see to that.

I used to love doing the Cher hot dance workout and I’d go out dancing all the time – it was my favourite form of exercise; next to learning martial arts and swimming. Ask anyone who knew me before 2004 and they’d confirm with a smile that I’d be the first person on and the last person off the dance floor of any club we entered.

These days I can’t do any form of exercise beyond short walks and I’ve forgotten what clubbing is.

Not only is my balance incredibly poor, my energy levels don’t allow for that kind of expenditure. If I have a night out I’ll give it a go, but where I used to leave the middle of the dance floor only for much needed drink and toilet breaks, now I’m more likely to¬† vaguely sway in time to the music near the dance floor for 10 minutes before sitting down or leaning against something; any more than that and I suffer for it over the next day or so with the inability to get out of bed or do simple tasks like shower and dress myself.

Yes I’m older, yes these things happen with age; but I’m 33 this year, not 63 and this has been the case for the last 5 years of my life; an activity that used to be the highlight of my week seems forever denied me because the consequences of dancing are now too grim.

I know that certain family members sniff at my perceived lack of domesticity; the true fact of the matter is I have to prioritise my daily tasks in terms of the energy I can afford to spend on it – which is why college work takes precedence over cooking and cleaning – mental work seems to take even MORE energy than physical work so I need to rest more.

This makes me appear lazy because I’ve done nothing but sit at my computer all day – when I wasn’t having a lie down that is. How can you describe the mental fizzing, the constant aches and the cognitive lapses that make any task take twice the amount of time it should to complete? You can’t without sounding like a chronic complainer.

Yes, I can have the odd week here or there where I just charge around as though nothing is wrong – when I do everything without the breaks and rests and lie-downs. I do this when I need to but all the while I’m praying the boom period lasts long enough to get the important stuff done before the bust period hits.

What others don’t see after a massive boom period (when I’m on the go from 7-8am until 11pm like normal people) is the bust period; the space of time when I’m unable to communicate in anything other than grunts and Stef has to carry me to the bathroom and move me into a comfortable position on the bed because I can’t do it myself.

This is why I am a blue badge holder even though I rarely make use of it, remember it is not always the driver who is the blue badge holder, just because I am medically exempt from driving (dammit!) doesn’t exempt me from the parking scheme.

Yes, I can walk and carry my shopping but every step is an expenditure of energy that could be used elsewhere, it is also a fail safe; Yes, I walk and talk going into the store – but if I hit the bust period and ‘crash’ halfway down the frozen food aisle then the person driving needs to be able to carry me back to the car.

So next time you see that healthy man or woman in the blue badge space running into a store – just think, they may not be so lithe coming out, they may be on pain meds that stop working as they get to the checkout, they may be prone to blackouts or dizzy spells or severe epilepsy, they may even have ME/CFS.
You can’t always tell from looking.

Words hurt whether they are spoken or just implied. Hidden disabilities cause more anguish than anything else because not only are you fighting to find a doctor who will understand and do their best to help you, you are fighting the prejudices of the world who see the outside facsimile of health and not the battle going on underneath.

The UK government will pay into research to find a cure for male baldness but they refuse to offer funds for biomedical research into ME/CFS. The ;implication seems to be that the current psychosocial ‘treatments’ are sufficient to manage an illness that’s all in the head. The implication that all ME/CFS sufferers (all 250,000 of us) are work shy malingerers is not only insulting, it shows a great deal of ignorance and poor judgement.

May is ME/CFS awareness month.

Here’s hoping that 2009 is the year that people do become more ME/CFS aware and something other than harmful exercise regimes or 6+ hours with a therapist is offered as treatment by the NHS.

2 thoughts on “But you don’t look ill..

  1. Lucy

    Good on you – this is a wonderful piece of writing which captures well what us ME sufferers go through. Thank you

    Reply
  2. Jlex Aamie

    A persons physical appearance has little or nothing to do with their actual health. My genetically inherited disease effects my ability to learn, concentrate, remain positive and confident, and potentially far worse. In my experience possibly the worse thing you could say to somebody you don’t know very well is that the reason you can’t do something is because you are not well. Generally people are not very understanding, in the larger majorities eyes “look well == are well” and us sick people who carry healthy looking frames are unlikely to change their opinions very easily. Its easier sometimes to just accept that the truth is, they don’t actually care.

    Reply

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