I’ve been slowly filling out my surveys on the You+ME Registry, which BTW you too can do, even if you are well: they need some controls. It is new to Australia, still a little buggy, but I’ve been reporting and they’ve been fixing and so it moves along.
Anyway, one of the surveys asked me what percentage of my waking hours I spend in bed or reclining on the couch. I actually don’t know. I chose the 50-90% option, thinking it’s probably 80%, but was that correct? I’ve been meaning to do some sort of “day in the life” thing. You can look at my busy schedule, and I can look at the numbers.
In reality, the times on this are not identical every day, it’s a decent approximation. I am in bed asleep (I hope!) from 11pm-7:30am, so that makes 15.5 hours to account for. Let’s pretend it’s a day in a reasonable week, with no PEM and no extra illness.
There are three or four kinds of days, each different. In decreasing activity order, there’s an outing, a light potter around the house, or a rest. There’s also a collapse option, which is worse than a rest, but I’m not using that for my calculations. A good week would have two outings, two rests and three potters.
1. The Morning
7:30-8:30am Wake up slowly. Do some stretching. Get up. Wash, exercise, dress, take meds, make coffee, prep breakfast, maybe get some dinner prep started. Some of the exercise is lying in bed and stretching but I’m still counting it as action. 30 mins movement. 45 max, or it could be less on a day I plan to go out to save energy. It’s also way less on a bad day with illness, PEM or bad sleep. I’m thinking of a fairly normal week with ME so say 30min average. (Tally: 30min)
8:30-10:00am Couch. Coffee. Games. Rest. Nothing strenuous. Every day.
10:00-10:15am Stand up. Finish making my breakfast. Bathroom break. Maybe get some dinner mise en place done. Maybe a spot more exercise. 15 mins. (Tally: 45min)
10:15-11:30 Eat breakfast on the couch. More games or web surfing. If I’m not too anxious I might read the news.
2. The Good Hours
The window of 11:30-4:00pm: I am mostly alert. That’s the absolute tops; it’s often less, like 12-3, and none at all on a bad day. I can’t use all these hours for activity; if I do something active, it will be curtailed.
This is the hard one to estimate. I may well be alert, but I am most likely still on the couch, barely moving. I could be writing a blog post or some emails, studying a bit of Japanese, ordering some groceries online, or reading a good book. There could even be visitors.
This is the window where I schedule appointments, shopping trips, or the odd lunch out. I don’t feel safe driving before or after this time. And it’s when I do any household chores I’ve planned, or any serious dinner prep if I’m cooking. (Yes, yes, “serious” means peeling a few veggies and putting some things on an oven tray, but it’s STANDING UP, yo!)
We have three basic options here.
I can usually only make it out twice a week. The length varies, but let’s say 3.5 hours a week. (Might be three hours one day, might be only half an hour, but it probably includes driving wherever so it can’t really be any less than that.)
2. Rest (or Collapse)
I’ll have two days of minimal action, probably the days after the excursions. Or the 24 hours after, but we’ll assume this averages. In this case I won’t get off the couch much. A few minutes to get lunch, or tea, and a bathroom break. The very barest necessities. Say just under 10 minutes a day, or call it an hour a week. Add another 15 minutes to do some small thing if I’m just resting, not collapsed, so this is 1.5 hours in a good week.
3. Potter Around
On a reasonable day if I’m not going out, and not decisively resting, I’ll get off the couch more often. Hang out the laundry. Do some dinner prep. Go pick some herbs and lemons. Get in the mail. Clean out the fridge. This would probably be about 30-45 minutes (over 3 or 4 sessions, not all at once!) on top of the minimum on a rest day. Let’s call this 2 hours a week – two at 45m and one at 30m. Seems legit.
Do the arithmetic: average of (3.5 + 1.5 + 2)/7 = yes, that’s exactly one hour a day! You may suspect me of fudging the numbers, but really all I did was some rounding off and it just happened. (Running tally: 1h 45m)
3. Late Afternoon & Evening
4:00-6:00pm. Watch YouTube and knit. (Or on a bad day, play games.) Even on a good day I will be very low and exhausted here, and it will be the simple mindless knitting.
6:00-6:30pm. 3 or 4 times a week, do some dinner organising. This will probably be a couple of 5-10 minute sessions, with more sitting in between. (Possibly some at 4pm when I suddenly realise it’s now or never, but we’ll fold that in here) If I’m not cooking, 5 mins to pick up whatever the Bloke has cooked, or what we have ordered, or 10 minutes to re-combine some leftovers into a meal. Oh, and there’s a loo break. Let’s say an average of 10mins/day. (Running tally: 1h 55m)
6:30pm – 10:00pm, eat dinner, watch TV (well, usually streaming), chat with Bloke, knit. This is mostly a nice bit of the day, unless I’m collapsed. It seems like almost normal human activity. Especially so if I am feeling alert enough to knit something complex – fairisle, lace, something with charts to follow, some new technique. I’m usually also alert enough to drive, but that option rarely arises. Maybe if we’ve had a dinner out and the Bloke’s had some beers. This would be less than once a month, but it’s still an option.
10:00-10:15pm. Get ready for bed. Bathroom, wash, tidying etc. Maybe a bit less, but maybe a bit longer if I’ve managed a shower. Say 15 minutes average. (Running tally: 2h 10min)
10:10-11:00pm. Rest in bed from the labours of the past 15 mins. Lying in bed, reading something light, reviewing a bit of Japanese vocab. Lights out at eleven.
The end result averages out to 2h 10mins per 15.5 hours, which is 14%. I was right! It IS less than 90% couch-bound, though only just. But that’s in a good week,with no collapses, a couple of outings, and some decent home time. Sometimes some of those 15 minute blocks of activity shrink to ten or five, and sometimes I might do one fewer. The first half of this month has been extra low because of a cold and the aftermath of the fluvax, so I’m sure I hit the 90% mark.
Two hours a day doesn’t initially sound too bad. You could imagine getting quite a lot done in two hours. But most people don’t think of a “two hour” slot as including things like getting dressed, showering, using the bathroom, making a cup of tea and so on. Or packing a bag, driving and parking and walking to the meeting room, and then repeat to get back home. That’s just taken for granted.
But for those of us with ME/CFS, this is a part of the budget that has to be considered. A one hour tai chi class sounds nice, and sure, I’d have the spoons for that on a good day – if only I could wish myself magically dressed and packed, and teleport there and back. In reality, it isn’t really just one hour, it’s two and a half hours. Zoom sessions and Youtubes are a great option here, if you can find good ones, and that’s something I’ve been investigating more recently.