Time for an update! Thanks
@SDSue for the reminder.
Right now, I'm smiling as I write this. I've improved a lot. I've been having coffee with friends again on a regular basis.
I can now leave the house for 4.5 hours. I went out to Black Angus restaurant with family on New Year's Eve. I lasted for their entire 5 hour visit
without fatigue. I sat up, talked, laughed, and joked at the restaurant like an "almost healthy" person. I did not need a wheelchair. I also had NO PEM the next day.
My most recent visit with Dr. Kaufman was December 15th. He said to me, "You are making a remarkably fast recovery. This is not typical." I am so thankful to that man...beyond words. If I had a healthy body and he needed a kidney from me, I'd give him one.
Granted, I'm not fully well by any stretch. I didn't sleep one night last week due to insomnia, and I had to spend the majority of the next two days in bed, feeling like absolute hell, as though I had regressed months in my illness. The "former Jeff" could handle sleepless nights like a pro. But after 3 days, I fully bounced back to my "new, much-less-sick normal."
I still have to watch my energy levels daily. Brain fog is ever-present, but it is WAY better. I can read and do web design again, albeit not as quickly and with rest breaks.
There's still no way I could return to grad school at this point, not even half time, or even handle a part time desk job. Five hours of activity sitting up is my new, absolute limit. I am very careful to
not go out and push myself to my limit everyday. I thank
@SOC for driving home this point in her posts about her and her daughter's recoveries. She gave remarkably helpful advice that has served me well. I force myself to rest way more than I want to and am fortunate to be able to do this. I've learned to say to myself and to friends "let's do this another time," without feeling extremely angry at my own limitations.
Without this board, I never would have known to go see Dr. Kaufman, and I never would have gone on antivirals or learned to rest appropriately. I was almost a vegetable before seeing him. I couldn't feed myself, my mother had to make me protein shakes with olive oil that I could drink through a straw, as lifting a fork and chewing were too much. There were times when I couldn't speak and had to communicate with a pen and paper. When I had to go to the doctor, I was in a wheelchair with my head drooped, as I couldn't hold it up. The next step was a catheter, a bed pan, and IV nutrition.
Fortunately, thanks to Dr. Kaufman and this board, I'm actually recovering. I can't believe this. I'm in shock that I'm improving.
I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself, and perhaps bitter as well. I really don't want to inspire sadness in anyone with this post. I want to inspire hope, but I know that this post can't do that for everyone, as many people are extremely ill for years and have tried everything they can.
The alternative to posting about my success is to leave the board completely, particularly if I become all the way well (which is still a long road ahead). I don't want to do that. If the people who become well disappear, then new sick people who come to the board won't have the chance to see positive outcomes.
What I can do is share the four things that are working for me.
1. Seeing a world class expert.
2. Taking antivirals and following all the additional recommendations of this expert.
3. Resting way more than I want to.
4. Reading peer-reviewed academic journal articles about this illness and about supplementation, and then taking those supplements that are supported by high quality research.
Of course, the above strategies will not work for everyone and are not possible for everyone. But for anyone who can do them and has not yet tried, please do so.
That's all for now. I'll be back, hopefully with more good news.