I didn’t quit, I bled out

I used to have hobbies. Perhaps too many of them, but I had them. I used to do them, had fun with them, enjoyed them.

And slowly but surely that stopped. At first I did it less and less. Maybe even didn’t do one or two of them alltogether anymore, to make space for the others. I tried to prioritise, do the ones that brought me most fun. I tried to fit it in, despite the fatigue and the illness and everything else, because I want to do it. I want to have something relaxing, something I enjoy, something just for me. But at some point, I had no more room left. No more energy. No more clarity.

I stopped drawing, chrocheting, photographing, hiking for fun.

Sometimes people comment on how I ‘quit doing’ it.

But I didn’t quit.

I bled out.

the problem with planning

I mentioned I have problems with planning. It mostly comes down to not having any energy left after doing what needs to get done to do any planning with. Productivity and all sounds nice, but you need to have something to go and do all kinds of productive things with.

I try to make things easy on me so I don’t need to spend energy on reacting to surprise events. And that requires planning.

I try. I write things down (I have a bulletjournal) and that helps. But stuff still wooshes by me. I made overnight oats so I don’t have to worry about breakfast. I made a few of them at the same time to preserve energy.

And then I forget about them. Out of sight, out of mind. Safely in the fridge, waiting for me to eat. And I still forget. It happened again this morning.

It might help if I stick a post-it on the fridge to remind me. It might work, or my brain will consider it clutter and filter it out. It does that a lot. It also ignores the drink next to me in favour of telling me to get a new one. I think, because I don’t always remember getting the first one or making the second one.

Setting reminders on my phone doesn’t work either (they drive me crazy and make me very anxious). I need to find a way that removes the pressure, not add more.

I don’t need more pressure.

tired of hearing it

I got ill years ago, and have heard plenty of strange things since then. Regarding my fatigue / tiredness I usually hear ‘Everyone gets tired!’ and how I ‘just have to push through!’. However, unfortunately, I can’t push through. I can push and keep going and push and push, but I never go through. Things only get worse. When I try too hard to ‘push through’ accidents happen. I’ll fall asleep while walking outside (literally, my head nods forward, my legs go limp, gravity does its thing). I’ll wake up instantly and sometimes I can catch myself, but usually I hurt my knees. I’ll set things on fire — no, not on purpose, purely by accident. My brain stops registering ‘threats’, I don’t seem to notice the harm in leaving a towel on the stove when I turn it on. Or a car heading towards me when I cross the street.

I can — partially — prevent this. No pushing. Ever. Limit stress. Strict sleeping schedule. Take naps. Eat well. Good sleep hygiene. No pushing — it needs repeating.

I don’t know how ‘tired’ feels for other people. What I see doesn’t match my experiences. People say they’re sooooo tired, and then go to a party for hours or see a movie in the theatre. They’ll drive cars, go to gymclass, go running/swimming/exercising/partying. They make dinner and do the dishes. They do a lot of stuff.

Sometimes I do stuff too. I can get a little hyper-active — or rather, a little wrapped up in pushing through because I want the fun damnit!

I don’t know if these people push through. I don’t know if they ever get to ‘through’. I think they do, most of the time. They seem to get to a point where they don’t feel ‘soooooo tired’ anymore. Most of the time.

I fall asleep during movies, and usually try to heat up food because my brain does not want to think about what to cook/eat. On a good day, I don’t burn myself. I wake up feeling I had many nights with only 2 or 3 hours of sleep and I cannot get more sleep, no matter how hard I try. I feel so exhausted, wanting to sleep more.

In reality I sleep 8 to 10 hours per day.

Less, and then the accidents start to happen again.

never entirely awake

Years ago, when I had a busy day and came home, had dinner and then relaxed, I’d feel tired and would usually go to bed and sleep well.

These days, I wake up feeling that kind of tired. It feels like my range of tired has shrunk. Where I used to go from 0 (asleep) to 10 (fully awake and alert) I now seem to never get beyond maybe a 5? I never fully wake up, never feel fully recovered. Sleep doesn’t seem to do what it did before — refresh me. I never feel fully refreshed. Most times I don’t feel any type of ‘refreshed’ at all. I might feel a little less sleepy.

I didn’t sleep well as a child and as a teenager, but somewhere between my 20th and 25th (roughly) things changed. I used to lie awake for about 1.5 to 2 hours before falling asleep and then wake up at least 3 times during the night, but whenever I got to decide my sleeping-times I did feel rested. I did feel refreshed. At some point I started falling asleep faster. At some point I needed sleep during the day.

Before, I needed sleep during the day only when I hadn’t slept well (or rather, enough hours) during the night. At some point, I started doing brief ‘naps’ at work, in the bathroom. Not every day, maybe weekly. I don’t remember exactly when, but since I still had a job I guess that started about 10 - 12 years ago. I’d feel so exhausted and out of it and unable to concentrate and focus that I’d lock myself up for about 20 minutes just to sit there with my eyes closed.

I thought everybody did that, but it turns out, they don’t…