Living With ME: A Bad Day

a top saying "I may be dead by I'm still pretty" in the Buffy font

Reading this back, I see that I mentioned going to the toilet a lot. The reason for this is that it was most of the activity I did on this day! Plus, one of my ME/CFS symptoms is a constant slightly-rough throat, which means I tend to drink a lot.

10.15  I wake up. It takes a few minutes but soon I’m in the bathroom, where I go to the loo, brush my teeth with my electric toothbrush while sitting down, and wash my face. I stare at my greasy hair in the mirror but I can’t face the prospect of washing it this morning. Luckily, I put deodorant on yesterday and haven’t started smelling today.

10.35  I shuffle back to my room. Every time I walk today, assume I’m shuffling. Picking my feet up just takes too much energy. Somebody is making a horrible scraping noise outside, so I put my noise-cancelling headphones on immediately and play some quiet, gentle classical music. I sit on my bed, eat some breakfast biscuits, and read some of the ‘Hors-D’Oeuvre and Salads’ section of Elizabeth David’s French Provincial Cooking.

11.15  I switch my computer on and scroll through Facebook. It’s my main connection to the rest of the world, as I can’t go out and meet people much, so I enjoy and value catching up on the little things in people’s lives, even on a bad day. It makes me feel less isolated.

11.30  I suddenly realise that I already feel absolutely exhausted and that this is going to be a really bad day. I went out and met a friend four days ago. It was pretty much the easiest outing you could devise, but I’m still paying for it and this is obviously going to be the worst day yet. I consider instant messaging a friend, but it’s hard to think rationally when I’m this tired, and I decide they probably won’t want to hear from me. Then I wonder why they haven’t messaged me and begin to worry that they don’t want to be friends any more. I cry a bit.

11.35  I try to decide whether to get dressed but it doesn’t take long to decide that this is beyond me today. Another sign that it’s going to be a bad one. Getting dressed is really important to me and I always do it if I can, even if it’s the only thing I do that day. Then I cry a bit more, because I’d hoped that I might be feeling a little better today. When I say I cry today, imagine me sitting around with liquid leaking from my eyes because I’m too tired for real sobs.

11.40 – I change my pants and put a bra on. The only thing worse than a pyjama day is a pyjama day without a bra. I really don’t want to go back to bed; I’ve only just got out of it. Normally even on a bad day I wait until after I’ve had lunch to lie down again. I shuffle to the loo.

11.45  I still don’t want to go back to bed but I know I’m going to have to soon. I cry some more and wish my friend would message me, even though I haven’t messaged them. Logic doesn’t really factor into bad day emotions!

11.50  I wonder how the fuck it got to 11.50, and then put a post on Facebook about how terrible I’m feeling, in the hope of being given sympathy and validation.

11.55  I go to the loo again, not even taking my book. When I get back, I set up an audiobook (Clariel by Garth Nix) and go back to bed, still wearing my noise-cancelling headphones. Wearing them means I can pretty much only lie on my back, but when I’m this tired even small noises seem unbearable. For a while I just lie still. After a while I pick up my phone and start playing games on it sporadically, when my arms aren’t feeling too tired.

12.25  I struggle out of bed to go to the loo, and realise that I’m rather hungry. Breakfast biscuits are wonderful for tired days but they definitely don’t keep you full for very long. I really can’t face going downstairs to get lunch, but neither do I want to ask my mum to make some for me. She already does enough. I start wondering how many nine bars you would need to eat to make a meal.

1.30  Mum texts me to check if she can come in to vacuum. I say yes, and have another wee. Mum vacuums the accessible bits of floor in my room and I hope she hasn’t noticed that the noise has made me cry again. She realises I’m having a bad day and offers to make me some lunch. I look on Facebook again and lovely friends have been lovely on the things I posted earlier. Plus my friend has messaged, solving my (completely needless) dilemma about whether or not they would want to talk to me.

1.45  I return to bed with headphones, audiobook, and occasional phone.

2.15  Mum brings my lunch, which I eat and feel slightly better afterwards. I go to the loo once more (I drink a lot!) and on my way, put my plate on the hallway windowsill, because it smells of my food and smells, like sounds, are something I struggle with particularly when tired.

2.35  I open the window a crack and go back to bed, but I’m starting to ache from so much lying in bed.

3.25  I go to the loo, then sit at my desk in the sun for a few minutes, but my desk chair isn’t very comfortable either. I close my window again.

3.35  I return to bed. I ache from being in just a few positions for so long, but it’s still easier on me than sitting in my chair. I’ve ordered a new chair, a seriously expensive and good quality one, which I’m hoping will help a lot with this kind of situation especially on bad days. It reclines and has a footstool, so I’ll be able to sit in quite a few different positions and also lie in bed if I need to, so I hope I will see an improvement in my pain levels.

4.15  Toilet time again.

6.10  Mum brings me dinner and I eat it.

6.20  I set my computer up on my bed so that I can sit up for a while, something I usually try to do even on very bad days in the hope that it will make it easier to sleep at night. For the next few hours I alternately sit and lie on my bed, do some things on my computer, and watch television and livestreamed newborn kittens.

9.30  Mum, having previously offered to do so, brings me some supper. I follow my normal evening routine by switching on my dim lamp and lighting a candle. After watching television and kittens for an hour or two, I take my headphones off, find where my audiobook stopped last night – yes, I have different audiobooks for day and night listening! – and set it up to run quietly for an hour; it doesn’t usually take me longer than that to fall asleep. I have a last wee and go to bed.

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