I wake up, I eat, I read a little, I go back to sleep. I wake up, I eat, I read a little, watch a show with my wife, go back to sleep. I try not to eat more than 1500 calories because my activity level is so low I’ll get fat if I go above that.
What’s the end game here?
EDIT, FOR CLARITY:
I can’t work. I need to sleep like 14 hours a day. I’m exhausted all the time. I get fatigued after about 5 to 10 minutes worth of any labor, including things like going upstairs or loading a dishwasher. My hands shake all the time, to where I can almost not clip my own fingernails anymore.
I work a job for years and retired from it there’s plenty of money coming in. I just find myself in a place now where this chronic, undefined illness has taken over my life.
Hey fellow sickie!
I feel this post. I’m also chronically ill and it limits the amount and types of activity I can do. No heavy (or even moderately medium) lifting, I need tons of sleep, I can’t push myself too hard, etc. This pushes a ton of work onto my wife and it sucks.
My advice is to do what you can, when you can, and never give up trying for more, even if it’s just the barest sliver of improvement. Let me break some stuff down. I know you won’t be able to do some of these things (maybe you can later), but this was my journey.
My diagnosis (Ehlers-Danlos syndrome and mast cell activation disorder) took almost a year of seeing seemingly endless doctors, but I eventually figured out what I have. It took another year of more pointed doctor shopping to find one that was both intelligent and knowledgeable enough to handle it. A diagnosis is key - you can’t treat something if you don’t know what it is.
All the while, I did physical therapy exercises, improved my diet, and tried to be as healthy as possible. When I started, I couldn’t lift more than a pound or two with either arm without being in excruciating pain later. Four years later, I can lift about eight pounds with either arm a few times, or light items many times. I’ve learned to use speech recognition and head/eye tracking for computer usage. It’s all small, but for me it’s huge. I can drive a car, brush my own teeth, and pick up my cat without too much pain. I’ll keep doing my exercises and gradually improving, it just takes dedication and a lot of time, and it’s frequently unpleasant. The key for me was finding how far I could push myself before I pushed too far.
I’ve learned to make sure my wife has ample opportunities to tell me about her thoughts and feelings. We do what we can together, even if that’s me staying awake through part of a movie with her. It’s the thought and effort that counts most: I do what I can, when I can, and I just keep doing it. It’s not perfect and it’s definitely not what either of us deserves, but it’s enough because we keep trying and we’re working on it together.
It’s all small improvements, but it builds up with time. At the rate I’m going, I might even be close to normal function for my age by the time I die!
Good stuff, and very positive! I’m sure the diagnosis is key. I’ve got nothing except what it isn’t so far, and I know if it’s long COVID then it’s bad if I exercise so I’m holding off.
Obligatory not a doctor but, if it’s long COVID or you suspect it’s long COVID, look into mast cell activation disorders. They’re often triggered by an illness or injury - mine was triggered by a massively stressful situation combined with getting COVID. Anecdotal, but every person I’ve personally known who has ‘long COVID’ ended up being ultimately diagnosed with MCAD once they saw a knowledgeable doctor and their symptoms markedly improved after treating it as such.
If you ever have any questions or need anything, feel free to drop me a message. We all have to stick together!
Thank you so much, I’m paying attention