Hello Everyone.....As a very long time sufferer of this illness, I've noticed a few things along the way.
- I don't think there is just one cause of this illness;
- We can move in and out of the worst of this illness, but it does take time;
- Being hopeful is a must....we can't focus on the negatives only;
- Keeping the mind occupied in as many other directions as possible is helpful.
That world comprised people who were just beginning this journey and needed help as they went along. There are as many personalities as there are human beings. I dealt with a lot of these people by telephone, some extending into late nighttime hours. Many I never heard from again, b/c at that point I was working with people waiting to go for surgery and well, some people are just plain rude. They expect an organization to have the answers when we were just people struggling ourselves. Others overwhelmed me with kindness and were so thankful to even talk to someone who had the same illness. Attitude means that you'll do so much for people, you'll spend extra time trying to find answers to their dilemmas, etc. I'm sure you all know what I'm talking about. So that became my second life....I've gone on to have other and while I've given much, I've also received the same. So remove yourself from your problems....get lost in music, movies, books, art and other people even.
In my case, the illness has waxed and waned. I've had to spend mos. to over a year bedridden, then slowly build myself back up again. Yes, I'm getting tired of it....but I'm now in my mid-70's. I don't expect to go on forever, but I would like to see younger people helped and indeed, I think (OK, I'm going to say that I know) you'll receive so much more than was available to us in our day.
Chronic pain has been a major problem with me....and we're even seeing progress in that direction. Perhaps I'm a born optimist, but I also have days when things seem overwhelming...and they are. But next week comes, and my view may be entirely different. I can be better, but I can also be a whole lot worse. I always bear that in mind.
I commend those like @Martin aka paused||M.E.
who keep a positive attitude as much as possible. It's so much easier to be the other way, but why? What does it gain us?
, it's possible that many long haulers may have had the beginning of this from before your illness....at this point, who knows? Some people will recover, but others will linger not knowing what is happening and why. Ask questions, stay informed and take good care of yourself. Only you can eat the right nourishing food, have the proper balance in your life. Enjoy what you can whenever you can. Fatigue and PEM can both be overwhelming....I agree. Go outside as much as possible....it's a world that we should all partake of, even if it means just going for the mail and saying hello to a neighbor. Don't watch the news constantly...find some humor whenever and wherever you can. I wish you well. Yours, Lenora.