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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.
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Dainty
- Author Dainty
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I don't know where to even start.
I was so close. I was healing. I was recovering.
Then I had a few hour's notice to find somewhere else to sleep. The fan I'd been using as protective white noise for months was suddenly "too disruptive" for my dad to sleep, and without warning he put his foot...
So, recovering from being almost completely room-bound and MCS so severe that the only clothing I could tolerate was homemade from unbleached undyed organic cotton material that had been boiled, soaked, and washed for months before it could even be made into clothing...
...I find myself with a...
It's heartbreaking, how courageously my body tries to heal.
Uproot me from wherever I'm staying on a few hour's notice, resulting in a scramble to pack everything up and no energy to unpack and settle in. I'm here on the couch, I managed to get the food in the fridge and change from jeans to...
"But wait a minute! I thought you were doing better!"
I am, folks, trust me. You see, my improvement has all happened outwards, expanding away from the house, because I share a house with people I find very stressful to be around. My long time caregiver used to handle the basics for me, but...
Since my last entry, some people have commented trying to help me feel better about how my living conditions really aren't as bad as they seem. And while I appreciate the intention, it betrays a lack of understanding on a similar level as a healthy person saying, "it's okay, we all get tired...
He asked me if I had trouble with hygiene - I burst out crying.
I've been trying to find out whether I can get home health care services from a government program. My therapist said I should be able to, so I spent 3 hours (!!!) on the phone last week being bounced around from agency to agency...
I've been officially diagnosed with Post Traumatic Stress Disorder from the trauma this illness has put me through.
It was validating to hear that. My therapist mentioned that lots of people don't like the diagnosis of PTSD because they associate it with being in a war zone, to which I...
This past week I've connected with someone online who lives in my area. We're both enjoying the potential friendship that's forming, though it's too early to say for sure what will happen with that.
He doesn't know I'm sick.
...but that's not to say I've been concealing the fact.
We first...
I achieved a lot of accomplishments today. Big stuff, in my world. Little stuff, by normal people's standards. But I did it.
I went to the dentist for a bite adjustment after major dental work yesterday that was causing me pain.
I returned some items at a local shop and purchased a pair of...
In a normal person's life, personal crises are occasional. They happen infrequently enough that one can excuse themselves from work or meetings or events or other responsibilities on account of that.
I began to think of this the other day when I realized I'm now well enough to attend events...
It wasn't out of laziness or anxiety that I hadn't seen a dentist. For the first few years I was too busy fighting for my life. The last time I'd seen a dentist was 4 years ago for a brief set of x-rays, but no work was done on the cavities because there were too many life-threatening things...
I was having a particularly bad night of insomnia, and someone I'd known around PR for a while was offering to teach me a technique to help it. Of course I was interested - I'd already tried everything else, I was game for just about anything.
Except this.
I'd always thought I was pretty good...
I still vividly remember the first few moments my PEM melted away.
It was like magic.
I was shocked; in awe.
6 years of that curse turning my mostly bedridden life into a special hell if I dared to overdo, ever. And sometimes ever without overdoing. Just for kicks.
The only way I could ever...
Sometimes I feel like my life is consumed with the task of cleaning up after myself.
I was feeling all productive because I'd managed to put about half the dirty dishes in the sink to soak. Good day good day good day! My dish rack will only hold half those at a time; need to fix that. I have my...
This past week...
I ordered a bunch of stuff off Amazon that I needed. Like, truly needed. And I sent some of it to the wrong address.
I had a conversation with a nice lady whom I thought was the one whose house I had stayed at last week. I only found out afterwards, from someone else, that...
Part 1 | Part 2
You have to understand, this is me on a bad day. I've been sleep-deprived for weeks and suffering noise exposure as I'm stuck in a house with people who don't get it and my sleep schedule is all over the clock. My brainfog has returned; I can barely hold a conversation and keep...
Part 1 found here.
WARNING: potential bulimia trigger. I do not suffer bulimia but those who do should read with caution. This post talks about vomit and some other gross stuff.
I made a lot of progress during last months' severe menstrual cramp episode. I've been having these badly since...
I cannot give an overview of the treatment approaches and healing process I have been going through the past year and a half. I've realized I can only give snapshots of where I am now and try to explain as I go along, which means you can only begin reading my story from the middle. I hope...
Sorry I disappeared so suddenly on everyone without warning, and haven't been responding to messages. My improvement has continued in every area except for noise sensitivity, which is causing major issues. When I can spend just a week living alone without noise nearby my functionality improves...
Some who have been following my story want to know how I'm doing. The short answer is, I'm doing fine. A good kind of fine. Stable and in a far more improved condition than I was 6 months ago.
It's tempting to leave my answer there, but since I have been sharing so much about this treatment...