It’s ME Awareness week right now, so here’s a very simple description of what one day is like for me with ME/CFS. This turned out to be a really good day, one of my best. They happen pretty rarely but they’re great when they do come round.
10.30 – I wake up from a very disturbing dream about a spider and lie there for a minute or two thanking crap that it wasn’t real. I go to the bathroom, go to the loo, empty my menstrual cup (goodness, what a blessing those things are!), rinse it and shove it back in again. Then I brush my teeth (using my electric toothbrush and sitting down) and wash my face and also my armpits and put on my crystal stick deodorant, which I like to use when I can because it means I’m not plastering my skin with unpleasant chemicals, but you have to apply it to clean wet skin, so I can really only use it on good days (I do so little activity that it usually lasts two or even three days, though, unless it’s hot!). I let my armpits dry off, then go back to my room. I don’t need to wash my hair because I did it yesterday.
11.00 – I briefly consider going downstairs to make a proper breakfast, but then I remember that I was woken up by the doorbell and heard Mum answering it, which in turn means that she is already downstairs and that therefore if I go downstairs for breakfast I will have to be in the presence of a person, and even on a good day that’s a bit much a mere half hour after waking up! So I play some gentle classical music, get a breakfast biscuit, and sit on my bed and read Insanity by Cameron Jace. After I’ve finished eating, I lie down on my front to read for the next hour or so. I also take paracetamol and ibuprofen because, period pain.
12.15 – I put my computer on and get dressed while scrolling through Facebook to catch up on what my friends are doing and thinking. I’ve already got an amusing message to send my friend via instant messaging, but she has already messaged me and we start chatting on and off, while I do various things on my computer.
2.00 – I go downstairs and put a potato in the oven, and take the opportunity to have a few minutes’ chat with my mum. A bit of ‘real life’ social contact often lifts my mood so when I can I try to do it. Then I go upstairs to have my first half-hour rest, which I do lying down and listening to a podcast.
2.45 – I get up, go to the loo, in an excess of energy clean the toilet (hurrah!), wash my hand, then go downstairs and grate some cheese and take some tinned mackerel out of its tin for my jacket potato.
3.00 – I take my potato to my room and eat it, then sit and do a bit of one of my FutureLearn courses (A History of Royal Food and Feasting).
3.30 – I debate whether to do some tidying in my room or to put away some clean clothes, and decide to do a bit of tidying first, then put clothes away if I still feel energetic later on. I listen to a podcast I recently discovered while doing it (By The Book).
3.50 – I sit down for a few minutes. It’s amazing how just twenty minutes of slow tidying up can make a real difference in my room! This, of course, is because on bad days I often don’t bother putting rubbish in the bin if I can’t reach it from wherever I am, or hanging clothes up properly, or putting things away after I’ve used them, while on mediocre days I can usually do these things, but catching up on the mess from the bad days is beyond me. So on good days I start by putting away the things from the bad days, which is all surface, easy tidying, and makes a visible difference. There’s bigger stuff I need to do as well, like sorting things or finding places for things, but I just catch up on those when I can and they tend to move very very slowly.
4.00 – I take my two minute rest. Part of my regime from the fatigue clinic whose services I use is that I’m supposed to rest for two minutes every half an hour (assume I’ve been doing this since I got dressed today). This is incredibly boring and I hate doing it, but I do because I have noticed that I feel a little better when I do it. On bad days, of course, I’m often in bed for hours at a time, so it isn’t really relevant, but on average days, when I’m usually sitting in front of the computer all day, it means I’m forced to change my posture regularly (I lie down for the rest); I switch off from my online courses or social media or doing surveys, and just listen to some classical music. On good days it feels even more tedious because I feel as though I don’t really need it, but I do it anyway, firstly because it means I get a regular rest – I also take two half-hour rests per day – which can only be a good thing, with my condition, and often when I lie down I realise that my heart is beating fast, which can be a sign that I’ve been overdoing things. Secondly, those few minutes of lying down give me a chance to concentrate on my body and determine whether I’m ok to carry on doing the activity I’ve been doing or whether I should do something lower impact for a while, or for the rest of the day. On this occasion, I realise firstly that my back is aching due to period pain and it’s time to take more painkillers, and secondly that I’m feeling a bit tired and should probably spend the next half hour doing something lower impact. So I sit at my computer and type out this long paragraph, which has taken me thirteen minutes. And take some painkillers.
4.15 – I switch to the FutureLearn course How Does The Body Use DNA As A Blueprint?, switching every few minutes to have a look at social media or a message, as I can’t concentrate on a single thing for very long.
4.30 – I do some more tidying up.
5.30 – I’m really getting into this tidying up thing (with my half-hourly rests in their proper place!) and become aware that I could well be starting to overdo it by this point. I’ll just break up these last two smallish boxes, and then stop.
5.37 – I sit at my desk and feel quite collapsed. I really hope I haven’t overdone it so much that I’ll be paying for this for the next three days!
5.45 – Dinner. I take the recycling bin downstairs with me and put everything into the outside one. I also put the cutlery from the dishwasher into the drawer and put some things into the dishwasher, and talk to Mum about what I’m going to cook on Saturday. I cook once a fortnight in exchange for her doing my laundry, because while I don’t hate doing laundry or anything I really enjoy cooking, whereas she has to cook every day so it’s nothing special for her, while doing some extra laundry doesn’t have a huge impact.
6.30 – I retire to my bedroom and put my pyjamas on, tossing away my bra with a shriek of glee. My boobs are pretty sizeable so there’s always this dichotomy where not wearing a bra is uncomfortable and annoying, but at the end of the day when I get to take it off it feels sooooo good! People with big boobs, I know you hear me! Anyway. Then I set my computer up on my bed to relax with it for a few hours before going to bed. This isn’t great because my posture on my bed is bad, but my desk chair is terribly uncomfortable and by this time in the day I can’t face sitting in it for any longer. I’ve ordered a new, expensive, incredibly comfortable one which should change all that and help with my pain and hopefully my fatigue a bit too, but that hasn’t arrived yet. In the meantime, dividing my time between my uncomfortable desk chair and my bad posture bed is my best solution. I spend the rest of the evening watching stuff on my computer, chatting to my friend, and doing other low-impact stuff. Later on I get supper, and go to bed about half past midnight.