Hello again – did you miss me? Aw, you’re so sweet
Its been a rough ten days or so, which is why I’ve not been posting. Not all of it was knitting related, though, I’m sure you’ll be pleased to hear!
You may already be bored of hearing me whine on about my (and here’s something I struggle with – what to call it?) condition / illness / problem / disease / disability** but this is going to be an article all about ME, or what my Doctor calls Chronic Fatigue Syndrome as it is ME/CFS awareness week starting May 9th and it seems timely. So if you’re not bored already, you probably soon will be….
If you go off and read about CFS you’ll be told that it is a debilitating condition of extreme tiredness, not alleviated by rest, experienced for a period of over 6 months. To be honest though, if you know what the words “Chronic” and “Fatigue” mean, you’ll have got there without the NHS’s help. What does it really mean to me?
Thankfully, I have only mild to moderate symptoms, so I am able to lay here (yes, sitting’s a bit much by this time in the day) and tell you about it a bit. I know a lot of sufferers aren’t able to do this and so I’m going to. And believe me, I understand what the condition can look like from the outside as well, as my sister was ill with ME from the age of about 14/15 to her mid-twenties. She still has to be careful if she gets ill now, but has managed to achieve a first class degree, a wonderful marriage to a glorious woman, and a truly beautiful son, so I think she’s winning (ok, I admit it, I am a very proud big sister). Until I got CFS, however, I didn’t really get it, if you know what I mean.
So what does it look like?
My paranoid self tells me it looks like laziness or malingering. Or like selfishness when I can’t do the stuff for others that I used to do.
When managing a humorous day, I am fairly sure it looks like a one hundred and three year old woman trapped in the body of a 28 year old (yes, when I’m being humorous I’m also often deluded about my age). Although, that’s not really fair on 103 year olds. The gentleman of that age who lives across the street from me is an amazing human being, often seen moving logs for their fire or doing the front garden, and I am in constant awe of him.
What it actually looks like is me, just me. I don’t think you could tell from the outside that I’m unwell (although, again, I may be delusional). Particularly on the days when I’m going to work or the now very rare occasions when I’m doing something with friends, I’ll have made the effort to look as much like “normal me” as I can manage, so it’s probably not obvious that my joints hurt, or that I’m struggling to put words in the right order to form sentences, or that, despite a better night’s sleep than I ever really got before the illness, I’m still exhausted to the point of nausea.
So I can understand when people forget, or don’t realise how ill I am. I also have good days, when I can manage a bit more, and then even I forget, and am bound to do a little bit too much and suffer for it afterwards. I’m uncomfortable talking about it – I don’t want everything I say or do to be defined by this condition / illness / problem / disease / disability – so I have a tendency not to remind people if I can avoid it.
Should you wish you understand a bit more, I can tell you how it feels to me, and perhaps you can imagine yourself feeling that way.
- Imagine you’ve done so much exercise that you’re shaking and on the verge of throwing up (come on, we’ve all been there).
- Throw in a good dose of the ‘flu – so now your joints ache, your skin is sore and you’re prone to throat infections and a racking cough.
- Now add the kind of confusion that only a bottle of tequila can usually create – you know, the one where you end up standing there trying to remember how to undo your trousers.
- And finally sprinkle with a light seasoning of the shakes, dizziness and visual disturbances (think somewhere between migraine and terrible hangover)
Got it? Even a bit?
Now imagine waking up, every day, with this looming over you. Imagine not knowing, until you’ve started to move, if your day is going to be this bad. Imagine a week of those days in a row, a fortnight, a month. Imagine trying to accept that this could be your life for the next 20 or 30 or more years. Not days, not months, YEARS. And the most terrifying part of all? Imagine fearing it getting worse.
Like I say, I’m lucky. What I’ve described above is an average-to-bad day. I do have better days, sometimes, honest. And I’m lucky that I’m not a lot worse – some people with this condition are bed-bound. I’m still working – I grant you not full-time, and with a reduction in wages and responsibility I’d rather not have had, but I’m still holding down a job, and that’s a really good thing.
The hardest part for me is what it’s doing to my mind – I struggle with my memory, with concentration and with simple tasks like spelling and maths (oh don’t get me started on maths) which were never ever a problem before. That and trying to stay hopeful – that’s a very difficult thing these days, and another thing you can’t see.
If you’ve read this far I think you deserve a bit of a lay-down yourself! If you’d like to know more, there are a lot of people who are much more articulate than me blogging for ME awareness week, so please, give them your time.
Normal cheerful service will resume soon (I hope!)
**thoughts on a postcard please