My partner had a surgery near Christmas time and I was a pretty big part of a three person care team. For the first almost week, one of her other partners stayed with us and helped a ton. But after that, I was the primary caregiver. Which isn’t the problem, I am very happy that I was able to be there for her when she needed me. I often feel like my disability prevents me from contributing to the household, so to be given a chance to contribute to her health and recovery really meant a lot to me, as it did to her too. But that doesn’t stop my disability..

I absolutely and fully pushed through my fatigue to be there for her. With ME/CFS/longcovid, that’s a bad idea. And I absolutely paid for it. I was in a fatigue crash for well over a month. That is, the entire month of January, and I’m just now starting to pull out of it halfway through February, easily dipping back into crashes on a daily basis. I may have.. publicly posted a rant instead of just talking to my wife about it a couple weeks ago too 🤦‍♀️ She saw it, and promised me I could take time off, because by that point she had regained enough energy to help take care of herself.

Me: I wanna suck dick but my head is killing me and I’m in oh god week three of this fatigue crash?

Friend: you were also being a caretaker for at least some of that time. which i’m sure had its own toll.

Me: That’s entirely why I’m in longest crash I’ve ever had :(

I had to caretake through my crash. I had to push through even when I had no energy, which is a very disastrous thing to do with chronic fatigue. There we’re other people helping too, but I couldn’t do nothing..

My wife texted me shortly after this conversation happened, a simple “hey, i love you” which told me everything: she read those posts. We talked when she got home and she promised to let me rest. I promised to come to her directly instead of ranting in public spaces.

The problem is I don’t know how to rest. And the apartment was getting messy messy, and there’s always laundry to do, cats to take care of, food to make. I can never truly REST the way I need to. I can’t lay down and do nothing for three weeks, I can’t make my partner do literally everything for me – but wait sugar, didn’t you just do that for her for about, uh three weeks?

😪

Yeah, I did. But I don’t have a fulltime job like she does. So I tried my best to rest for a couple weeks. And I finally started to get some of my energy back, very little by little. The other day, I was doing sort of okay. I washed my face and made myself breakfast, which since December has been sending me into a midday crash. I was rotating laundry loads, and have been doing my best to keep the kitchen clean (wife did a huge deep clean recently, and I’m determined to keep it as clean as possible by cleaning up the little things before they get too big).

And in the following days I paid for it.

Another major killer is lack of sleep. Specifically that I have fucking insomnia pretty regularly now (thanks longcovid) and that I need an average of 10 (ten!) hours of sleep a night in order to function well (thanks longcovid). I’m getting very irregular sleep lately, and my CBD gummies are super hit or miss. Bedtime routine is hit or miss too, but even when I can do it properly multiple nights in a row, it’s no guarantee I’ll get to sleep or sleep well.

I’ve started wearing my nightguard again, which has helped with overnight teeth grinding and jaw clenching, which in turn has decreased head pain, eye pain, ear pain, jaw pain, migraines from all that pain. Pain takes so much energy, more than you’d realize, until you don’t have any energy to spare that is (and chronic pain (myalgia, arthralgia) is a fun symptom set of CFS/longcovid). Interestingly, I lost some hearing right after her surgery. It was because of TMJ issues, caused by clenching my jaw from stress and exertion. Most of that hearing has come back since I’ve been wearing the nightguard.

The human body is frustratingly complex!

And that frustration is really boiling up right now. I’ve been disabled like this for four years now. I’m stuck with this even though it’s not my fault. The support and care networks are practically nonexistent, and I still haven’t learned how to handle or manage my disability. My triggers seem entirely random at times. I have a longcovid crush (call it problematic, I think it’s normal to crush on people you relate to) and we were ranting about this just the other day. It’s so hard to figure out how to manage this when we don’t even know what reliably causes a crash. One day I can do tons of laundry and I’ll be fine that whole week. Another day I can do a small amount of laundry and I’ll be absolutely dead for three days following. It just doesn’t make sense.

I wear no shame in being disabled, but damn do I miss being able bodied.

Washing my face is completely wrecking me again.