Wow, that is incredible news! What do you attribute the change to?
I might live in a different part of the city than you but we had a huge windstorm last night and I thought it was going to blow everything off my patio! I'm glad it did not mess up your garden!
Absolutely and enjoy the moment.
I'm in Encino. We had winds here too, but not too bad.
I think what's helping me is (unfortunately) something that would help a small minority of people with CFS. Jumping to the end may same time for those who don't have the energy to read personal journeys.
Backstory: By the summer of 2016 the debilitating fatigue of this disease was back with a vengeance. I've lived every day with this since 1984. Initially bed-bound. After a few rounds with doctors who were looking at Yuppie Flu--and trying a couple things that made matters worse, and a few visits a Chinese doctor (I had "wiry pulse, don't you know?) for potions and acupuncture (which wasn't unpleasant, but did nothing) I decided to give up on medicine until there was a mechanism discovered that causes this disease. That couldn't take long, right?
Anyway, I decided the only way to feel better (not "well" mind you, but more able to function) was to eat well, and live well, and do things my body told me were good for me, and to avoid things that were clearly bad.
So I invented "pacing." I mean, I didn't call it that (and no one else knew I'd invented it) but I understood the concept early. Just like I understood "PEM" from the get-go, despite learning the term only recently.
I could have a crash provoked so easily. Being around one cigarette could send me to bed for days. No more clubs. I got back to work, but the early years were work then sleep with no much social life in between. As time went by I became less sensitive to things. The night-sweats faded, the inflamed lymph nodes stopped hurting, light stopped feeling painful. Still plenty of fatigue. Never had joint or muscle pain.
Over years I got good at managing "crash avoidance." I worked, had a pretty good career, found a beautiful partner and married her. We have a wonderful 13-year-old son. I had CFS always, but one of the more manageable cases (if I called it "mild" I'd have to punch myself in the face).
But in the past couple years what had worked before started to fail. Life became more and more compromised. I was too sick to work. For all the decades I'd paid for good health insurance for my wife and I, as he had hip issues and I knew she'd eventually need a hip replacement and I wanted a great surgeon. But I avoided the doctors. I did not want to get tagged with CFS when I was self-insuring and they had nothing to offer.
But things changed. We got new insurance through my wife's work. Kaiser, which while a downgrade in some respects (as we can no longer see who every we want) has been insurance I actually felt comfortable using. Kaiser is a non-profit health organization (for those who don't know) where all ones doctors work for the company and all the treatment is on one big campus. Patients pay very small fees for services. To me, it feels like what a national health service might feel like (except this one isn't government run). I like it.No CFS specialists though.
Sorry I'm digressing so much--but like I said---I'm feeling energetic today.
So I decided to start pushing to see if there were any other conditions that might be contributing to my fatigue. And there were. The first that I discovered (doctor said nothing) as my testosterone levels were low. 6 points (out of 300) over their minimum threshold of treatment, so we had a battle that I won. TRT helped a lot. But I was still bad. But how had the energy to dig.
Turns out thyroid was low (again "low normal," but jeepers). Been getting that dialed in over the past year and finally may have hit optimal. Same with Vitamin D and B12. Both low and I started treating.
It was like if you could look for the most obvious things that might contribute to fatigue, I had all of them. Except sleep apnea--which it turned out I had as well--what a mess
So I started on one of those APAP machines. It was a little weird, but it seemed to help. For a while. And then the therapy started going bad. I started having "Central Apneas" where the brain stops breathing mixed with the regular Obstructive sleep apnea.
I followed the data and discovered there was a device called an ASV that's designed to treat people with the sort of rare mixed apneas. But the machines are expensive and hard to get prescribed. But I worked the system.
Anyway, I got the new device a week ago. The second night wasn't bad, but I found myself out of sync witht he setting and have been making adjustments to maximize comfort and therapy. Then, the night before last, I slept. Real sleep. Not CFS trashed out unrefreshing sleep. Amazing!
Now two night's in a row. I pray it lasts, but I have not had days that were this great in a very (very) long time.
I still feel my old-pal lurking in the background, but what a difference to sleep soundly. I'm feeling human.
I'm sorry for the long post. I'm even more sorry that this isn't a universal solution, as I suspect few are additionally compromised with Central Apneas on top of their CFS, as I have been.
But for those who have sleep apnea issues, I'd recommend a free software called Sleepyhead that allows patients of monitor our own data (these machines are capable of recording amazing details) and if anyone is interested I can point to a forum for help if you PM me.
I hope I have another great night tonight. Just these couple days have felt like a reprieve when I really need it.
Best,
Bill