its a pretty day, not crazy weather, kinda warm but not real bad and i am dead tired, been in bed for several hours but in so much pain couldnt sleep but so exhausted feel like i cant make it.
these illness are so strange...not really sure what caused this to be so bad today...
This is almost certainly post-exertional malaise. You keep pushing and pushing yourself and you are running yourself into the ground. You need to learn how to pace yourself - this is a lot different than healthy people pacing themselves. It means that you need to avoid doing things that cause symptoms. Even pushing yourself a little bit eventually adds up and there is another crash.
i was thinking of part time work again been on my mind alot...but im so scared...not sure what if anything id be useful at and the way i feel not sure what i could do...if just getting up exhausted me waht would working do? just feel like i might be setting myself up for faliure...but cant stop dreaming...would love ot help kids more...
It's good to dream and to keep that as a goal, but it's important to realize your current limitations and the effect that your current behavior is having on your life. You keep making yourself sicker, and you cannot heal while you are doing this - and you CAN keep getting worse if you persist. I miss doing volunteer work too, and chatting with my co-workers and feeling productive ... but I know (from experience) that if I try to go despite my limitations I'll keep getting worse. And then I won't even be able to do very basic things like cook an easy dinner, brush my teeth, or walk up a single flight of stairs.
We need to choose our battles very carefully, because the results are catastrophic if we keep fighting battles we cannot win. You have a serious physical illness that is highly debilitating and it can get worse if you are not careful. You need to start thinking and acting like a disabled person. If you didn't have any legs you wouldn't be trying to win a marathon, but that is pretty much what you're trying to do by carrying on with life as if you should be able to do the same things you could do before.
Most muscle and joint pain will go away if you don't push your limits. Just like normal pain, the pain we get with ME is warning us to stop doing something, and crashes can be avoided by paying attention to it. Headache pain that isn't touched by aspirin, etc, will often respond to 2-3 grams of fish oil after taking it for a day or so - I take it daily so I don't have to wait for it start working when I do get the headache. N-acetylcysteine (NAC) might help prevent your brain running around in circles when you do wake up.
I had trouble sleeping too, but pacing, hydroxy-B12, fish oil, and NAC have resolved that problem for me.
