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!

I don’t really know how I handle it. I’m bedridden, leaving it only for my number two. I guess my wife and kids telling me that they love me keeps me going. And sometimes there are funny videos on YouTube.

Today’s my birthday and one if my friends donating to https://mecfs-research.org/ for me brought me to tears. So I guess I still have hope.

Now, I can’t give you actual advice, if this is something that’s constantly bothering you, you might want to speak to a therapist. What I can offer is my perspective - however, you might want to know beforehand that I’m not chronically ill. I had medical issues which weighed on me quite a bit, but those turned out to be resolvable after about 2 years.

I don’t think live has any grand purpose and you’ll never be content if you try to chase one either. There is no point in waiting for something that may never come. The best thing you can do is to find things you enjoy and maximize whatever you can get out of live. Try lots of different things within your means, visit places and meet new people. The worst thing you can do, from personal experience, is to repeat the same things every day. Your days blur together and there is no meaning to be found in them.

I’d say people run around their whole life chasing peace. Having the time to ‘just wait’ is the contrast to the ‘stress’ people experience in heir daily lives. A guy I know recently said ‘Work gives us purpose’, since you’re retired you have served yours and can now peacefully enjoy your free time. I’m not I’ll, but I sleep a lot too. Sleep is by far my favorite thing.

If your body is failing there’s plenty for your mind to do. Mental exercise burns almost equal amounts of calories compared to physical. Learn something new, do puzzles, do inverse Laplace Transformations, do the taxes, do whatever is mentally stimulating. If you read a lot, and dream a lot, then maybe you should start writing.

There’s a difference between being a burden and accepting help. Helping each other is what makes us human. Arguably the first sign of human society was a prehistoric humanoid skeleton with a healed broken leg. If you feel like a burden, try to to quantify why? Are you asking for to much assistance? Are you asking too often for it? You can set clear boundaries with your family on how much assistance you feel comfortable accepting, and how much you actually need.

The end game? You’ve already reached it, now you can do what ever you want and are capable of. Nobody expects you to work in your condition. The young and healthy work so that the ill can deal with their struggles. That’s what the whole ‘No man left behind’ attitude is all about.

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490 ?

Don’t let it get to you! You are probably awesome. Hopefully you will get better!

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