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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Carrigon
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We have alot of groups dedicated to health. And that's where I'll be.
Have you met my friends? Dizzy, Lightheaded, Fatigue, Screaming Pain? And the twins Light Sensitivity and Sound Sensitivity.
They won't let me go out today, and it's a beautiful sunny day here with perfect weather. But they won't let me go out.
If I stand up, Dizzy, Lightheaded, and...
I am so tired of people trivializing how much I suffer. No one gets how severe the POTS attacks are. They are completely incapacitating. I can't stand, sit, or function from them at all. And the sound and light and scent sensitivity, when I flare up are impossible to ever function or work...
I miss being in the warm sunlight so very much. I'm so pale, I look like a corpse. And I'm never well enough to go out in the sun much. And it hasn't been warm out for a long time.
Even when it is warm out, I'm usually too sick until nightfall to go out. So I never get to be out in the...
No one understands what I have to do just to do something normal in life. The real hell of trying to keep up. My best friend wanted to go out to dinner last night. Well, in order for me to be able to do that, I had to take pseudofed just so I wouldn't be lightheaded and weak and dizzy. So I...
Don't you hate it when someone tells you they KNOW all there is to know about something you have healthwise, and you try to explain to them the latest research and stuff, and they still don't want to hear it.
I was contacted on another site by someone who claims to have worked in critical...
And it probably explains why many others here are sick as well. It was the vaccines.
I went out to dinner with friends yesterday, and woke up in so much pain. Full on flare. The payback was NOT worth it. I loved seeing my friends, they were in from out of the country and they made time just to see me before they went back. The food was very good, too.
I had to take...
Today, I got hit with an electric bill from the place I live at. They had given me a letter over the summer that I didn't have to pay anything for those months, but apparently, they screwed up. So I got hit with a bill. I did put away money toward the electric, but when they said I wouldn't...
The cruelest days of all for me seem to be the ultra rare good days like I had yesterday.
Yesterday, I wasn't lightheaded, I wasn't weak, dizzy, fevered, nauseated, not even in much pain. Some stiffness, but not enough to be bad. And the light wasn't bothering my eyes, and I was able to...
This is a repost of a very powerful essay written by Jen R back in 2000. But I thought it was so incredibly powerful and just so perfectly describes what we go through that I wanted to repost it here. She really gets into what we go through as patients in a world that doesn't understand us...
I hate nights where you can't sleep, and then you end up freaking out over everything in your life.
The heat in the apartment building I'm in has been making me seriously ill for months. It keeps triggering my POTS and then I get faint, weak, dizzy and lightheaded. By law, they have to...
All flared up and way too sick to go out to dinner, so I had to cancel my Thanksgiving plans. I'm not surprised. I've had to cancel so much over the years with all different occasions.
My sound sensitivity has been really severe lately. And that right there, I knew I couldn't be out to...
I'm having a massive flare up. It's the usual November flare. I've had this since the 80's. You can set your watch by it. The right gland in my neck swells up, pushes on my ear so I get an earache with it, and some odd tinnitus ringing in it on and off throughout the day. Fever, the usual...
First, WARNING ADULT HUMOR in Link! You have been warned, do not complain if you're not into it, just don't click it.
Okay, I am dedicating this song to my evil relatives and to Simon Wessely. And anyone else who has ever disbelieved us or treated us like crap because of our illness.
I was flipping through a magazine and saw a little ad for Sonia Kashuk's nail polish, and one of her latest colors is called Fatigued. At first, I thought she was making fun of us. I'm being overly sensitive, but since the entire world has made fun of us for like thirty years, it's kind of...
Typical of today's subhuman care in the US.
So we started talking about my irregular bleeding which has started again. And she looks up my chart and she's like, two years ago we saw what we "thought" was a uterine fibroid. But I can't guarantee you it's not cancer. (Basically it's an...
I wanted to share this because it just seemed to make alot of sense in so many ways.
I did a card reading tonight on myself to ask why I'm going through all this now, this disease, all the horrible things we go through in life. And the card I got was The Medicine Bowl. And this is what it...
I had a huge blowout with my uncle over this disease tonight. Alot of things. It was bad. But tonight, I finally saw the light of what he's doing.
He is insisting that there is no disease and that I'm just that "fat, lazy relative who doesn't want to work" because he doesn't want to...
Anyone ever have some non understanding person ask you "What are your long term goals in life? Where do you expect to be in five or ten years?"
Goal? What's a goal? This disease has long ago crushed all my hopes and dreams for my life. My "goals" are to simply get through each day and do...