-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Dainty
- Author Dainty
- Create date
- Updated
My bridal gown was huge and gorgeous. And also impractical. I could hardly go anywhere on my own, and my dad had just told me to stay put or else the wedding guests would see me before the ceremony.
Before he left I requested, for the third time, that he go find one of my bridesmaids for me. He...
I feel like I should keep writing these even though they seem somewhat boring. Progress is slow, and I work hard for it in ways people don't see. But it's happening, and it feels like something I wish I'd documented more when I was more severe.
Last month I wrote about a breakthrough regarding...
(I originally published this on private social media about 9 months ago. It is geared towards people unfamiliar with our types of struggles. I realized some here might find it helpful. Enjoy!)
Plants reach for the light.
It's instinct. The sun makes them feel good. Alive. Warm fuzzies.
No...
Last week was hell.
It's the hardest I have pushed myself since my years of being mostly bedridden. That was the case even before the viral bug with its 101 degree fever, or the next day's job transforming from 2 hours to 6. It was the case even aside from the PR stuff. It just sucked, period...
I was participating in one of the fiery threads when I got this thrown at me:
What a weird and inflammatory thing to say.
We'll need to put aside the fact that I'm not interested in moderating. Been there, done that, didn't even get the T-shirt. I've moderated on a lot of forums in the past...
I was raised by a mom that's fluent in ancient Greek and taught logic classes on the side.
From her I learned that conflict resolution was all about getting to the bottom of The Truth, often reasoning yourselves to death along the way. Emotions were entirely unhelpful to conflict resolution...
I went in for another treatment about a week ago. I hadn't been there in a while, due to expenses. But I knew my body needed it.
He taught me another technique to do on my abdomen. Now, I have been having folks work on my abdomen for....at least a decade now? A natorupath said it was literally...
I used to share a lot of these, but it's been a while. I'm still "doing the process" of healing, as my osteo and those close to me have come to call it. It's anything but easy. If I stop doing it, I am certain my improvement will no longer continue, and over time I would relapse after a major...
I'm sitting here sipping hot Egyptian Licorice tea watching the morning rays topple through the window. I can't remember the last time I felt this relaxed, this....settled. I leave for work in half an hour, but I've already got dressed, brushed teeth, fixed and ate a baked potato, not to mention...
I got a job!
This is significant, as it's the first time in my life I have ever been an employee. Previously I was always too ill, ever since a few months before my 17th birthday.
I'm 28 now, and I just got my first job.
I've been freelancing for over a year now, and I still have some steady...
(Hope you all don't mind me posting something here that has nothing to do with ME/CFS. There's been a major change to my life via my partner's job and I felt it ought to be shared as part of my journey.)
I don't want to be tough. I don't want to be strong. I don't want to be "okay".
I want to...
So I have a new primary doctor. I never really expect the doctors who take medicaid to actually help much, but I've found that they can at least help a bit with palliative care and some secondary issues. This one, a naturopath completing her residency, seems to be going above and beyond to...
Many of you are familiar with the basics of my story. Mostly bedridden for 8.5 years, then significant improvement from a combination of n advanced form of cranial osteopathy, meditation techniques, lots of rest and intense lifestyle changes.
The past 3ish years my improvement has continued...
So, I recently got 3 teeth pulled. They were all infected, so they had to go.
Predictably, my body crashed - I slept about 22 hours/day for 3 days straight. I haven't left this room in 4.
He held my hand through the entire procedure. When I was traumatized from the immense pain and had them...
Today I watched that amazing TED talk by Jennifer Brea for the first time.
And it all comes flooding back. The non-stop wall of pain. The crushing fatigue, so severe and causing so much suffering I think it should be labeled a form of pain, too. The desperation. The confusing mish-mash of...
Intro
Many of you once knew me as one of the sickest patients on here. I can still remember the days where all I could handle was the chatroom. And when I mentioned I couldn't read the forums people would get all confused as to why - because it was too much for my brain! Mostly bedridden...
Being disabled gets to me sometimes.
Usually I can shake it off. When an unexpected loud noise causes me to suddenly shriek and collapse? Ahem. I'm fine. Moving on. A stranger in the street mocks me for my mask? Whatever, dude. I lose balance on the dance floor and it's sudden death grip on...
I'm still living in a van. A minivan, now, to blend in better.
I find that with a handicap placard and the ability to have my entire "home" nearby whenever I need it, I'm far less "disabled" by my condition than I am otherwise. Key reasons that come to mind:
The ability to lay down and rest...
Today I walked into a food bank for the first time.
It's taken me three months of homelessness to reach this point. SSI is a little over $700/month, food stamps are $116, and so long as my only purchases are gas, food, and the barest of necessities it's doable. Unfortunately three months...
It's been so long since I've wandered over to this part of the web. Life has been ridiculous, but good. I'm still too ill to care for myself even living in a house, and yet I'm somehow eeking out survival from a van on the streets of Seattle with more happiness and freedom than I've experienced...