I’ve realised that I haven’t written a post describing what life with ME/CFS is really like, since my illness became this severe. So here goes. It’s taken a while to write this; my apologies if it’s a bit broken up.
(I was tempted to do this in a pastiche of those celeb lifestyle pieces – “Rosemary sinks down into the oatmeal sofa on which she passes her days, running a hand through her artfully tousled bedhead” – and who knows, one day I may still – but for now this is going to be writing with minimal artifice, minimal effort. You can probably figure out why.)
So this is what it’s like.
Everything I do, all day, every day, is about conserving energy, and avoiding pain.
Most days I feel somewhat uncomfortable, and some days I feel really horrible, so horrible that it makes me nauseous. (And tearful.) The more I do right, the more comfortable I can feel. And doing right means expending as little effort as possible.
This is because I have unfeasibly small stores of energy. I’d estimate that a small task for me (let’s say popping to the bathroom, or eating my lunch) is equivalent to maybe a 20 minute run for you. I can do it – in fact I can do it several times a day, and in my case I have to – but I need up to an hour’s rest afterwards. And rest, for me, means lying down.
Because I have so little capacity, my day is structured around doing what I need to do in order to survive – that is, eat, use the bathroom and stay clean – plus a little bit of extra ‘activity’ to prevent my wasting away. This activity currently comprises 90 seconds of very slow walking in the garden once or twice a day, and twenty minutes sitting upright at a time. Meal and snack times are pretty rigid as this helps me get enough rests in between exertions; even loo breaks need to be semi planned.
The rest of the time, I’m lying down, on my sofa.
I can’t do anything for myself. A trip to the sink to fill up my water bottle – unlikely. Making a cup of tea or getting something to eat – out of the question. So I need fairly close care and attention from my carers.
If I climb the stairs (which happens twice a day), I have to lie on my bed to recover afterwards. I’ve learned to sit down whilst cleaning my teeth; I can’t stand for that long without repercussions. Occasionally I find myself needing the loo but without the preceding rest time to facilitate it; this means either holding on for an hour, or going and suffering the consequences – likely feeling like a truck has hit me for the next hour, or at worst, the rest of the day. Embarrassing, isn’t it.
I can’t have visitors or talk on the phone as it’s simply too exciting. I feel OK doing it – in fact I feel good doing it – but the exertion and the adrenaline will have me paying for it afterwards for at least a couple of days, or, for longer and harder visits (such as my last therapist session), maybe a whole, very painful, week. I think this part is the hardest for friends and family to understand. I don’t see anyone. Let’s skip over that, though, because it’s too depressing.
My brain is rather ahead of my body. It’s not great and it can’t do much early on in the day – but from late morning onwards I can go on Twitter and watch TV OK. So my life is mainly reading, watching sport or box sets on my tablet, and trying to stay within my limits.
So the day passes. So my life passes.