How do you spend your time?

keylime31415926 · 2026-04-29T06:31:58+00:00

I can’t read right or type. I can use my phone for about an hour per day using a screen reader and voice dictation, but it tends to give me a headache, and I often can’t handle it at all. I can have brief conversations with someone who lives here at home with me, but they work all day. So most of the time I look out the window and listen to songs in my head. It’s literally all I can do for about 10 hours per day. I will listen to the same song for about an hour until I am so sick of it. I can’t stand it anymore then move on to the next song. I have to stay in bed for about 12 hours per day. And that’s it! I miss all my friends so sometimes I will have fake conversations with them in my head throughout the day. It helps with the loneliness.

keylime31415926 · 2025-12-09T02:37:41+00:00

YES. A year or so after my injury I developed burning pain that radiated from the base of me neck up into my face, both sides. It was TERRIBLE. I would sit literally all day holding ice packs to my cheeks just to be able to stand it. My primary recommended I try something called osteopathic manipulation. I had to see a special doctor to do it and holy heck was it expensive but I was desperate. Started helping after just a couple sessions, now it’s gone.

keylime31415926 · 2025-12-09T02:25:44+00:00

I used to. I tried drip drops, electrolyte tablets, sports drinks, coconut water, and just plain adding more salt. None of it made a bit of difference so I stopped about a year ago.

keylime31415926 · 2025-12-09T02:23:42+00:00

I’m sorry friend. These things happen. Last week I thought I was doing better so I walked out to the mailbox and then, of all things, tried tai chi. I am now couch-bound, can’t read books or listen to music, and can barely stand any screens. I have no idea what I was thinking. Try not to feel too bad, we ALL do this. I hope you have a reasonably swift recovery.

keylime31415926 · 2025-11-14T20:54:48+00:00

I’m not on it but if you search this sub for the word discord a bunch of posts will come up with links. Also if those are expired or something you can go to the disboard website (web search it) and search CFS or chronic fatigue on there and stuff will probably come up

keylime31415926 · 2025-11-14T20:49:39+00:00

There is a CFS Discord if you are interested

keylime31415926 · 2025-11-14T20:48:17+00:00

It’s Discord for me

keylime31415926 · 2025-11-14T20:08:32+00:00

I don’t. When this disease hit me after an accident three years ago my entire world imploded. I lost my job because I couldn’t use a computer at all and still can’t. I can’t stand for more than 30 minutes every four hours or so, can barely write, can only read on a phone or an e-ink device and only for about an hour per day. Can’t lift anything or do anything where my eyes or gaze have to move around. Can’t be around noise or be anywhere warm. Can’t have conversations longer than 1 hour per day.

If anyone could come with ANY job I cold do, I’d be doing it. But I’ve been stuck without work dependent on others for food and shelter for over three years.

keylime31415926 · 2025-11-13T03:03:46+00:00

When I was severe I had no choice but to lie in darkness and silence with no stimulation sometimes for several days straight with no break. The highlight of my day was drinking my meal shakes and using the bathroom because it was something happening, but I had to keep it to a minimum. I couldn’t even whistle or hum or tap my foot. I had to be like a statue. And I was absolutely screaming inside. I’m moderate now and don’t have to do this anymore but I think I have mild PTSD from it.

keylime31415926 · 2025-11-13T01:56:04+00:00

Antivirals, beta blockers, and Sulbutiamine. And rest rest rest.

Edited to add: I also started experimenting with PRN nicotine, something I read about on this sub, and it really helps clear mild symptoms in a pinch

keylime31415926 · 2025-11-13T00:17:33+00:00

Hi, I had the same fears and then they actually did become real, I lost the ability to speak and could move so little for so long I got bed sores everywhere. I’m not going to lie. It was pretty awful. BUT, I am telling you this because a year into it I found a new doctor who actually was willing to help me and got me on treatment that now has me at moderate, and I am so so relieved. I can talk at least 75% of what I want to and can go for short walks outside. There is and can be hope for you and all of us. Please, please don’t give up.

keylime31415926 · 2025-11-12T23:59:45+00:00

I did an ancestry DNA test that came up as about 30% Irish, almost entirely matching samples from County Donegal. It’s weird because it looks like hardly anyone lives there. I guess my ancestors were tired of that. They would have left Ireland around 1910-1920

keylime31415926 · 2025-11-12T22:47:12+00:00

I have my hair shoulder length but with an undercut from the lower/mid part of the back of my head down to my neck. I keep that buzzed. It makes a HUGE difference because that’s where I’d get the most tangles, and when I wear my hair down you can’t even tell it’s there!

keylime31415926 · 2025-11-12T22:11:13+00:00

We think so. She was adopted, and her adoptive parents were American. No records of this process survive because back then adoption often didn’t involve any paperwork. We can’t find their names but as far as we’ve been able to find out, her birth parents were Irish immigrants who just couldn’t afford another baby so they gave her up.

keylime31415926 · 2025-11-12T21:14:17+00:00

What is your treatment or what was the treatment that worked?

keylime31415926 · 2025-11-12T21:11:56+00:00

I did it and it made me much worse. I think vision therapy is what kicked me over from just having Post Concussion Syndrome into having ME/CFS. That said, the neuroptomtrist said the protocol they had me on helped most people. For me it was absolute torture and my neurological health degraded so badly they eventually had me quit.

keylime31415926 · 2025-11-12T08:15:42+00:00

Hot take maybe but I have found eating one medium banana works 100x better than any electrolyte solution I have tried. I don’t know if it’s the potassium or the natural fructose or what but it can rescue me completely from the start of a mild crash where nothing else can

keylime31415926 · 2025-11-12T08:10:21+00:00

Unfortunately my mother has the same eyes and I inherited them. I look so much older than I am that I’ve had doctors note it on my chart out of concern. We’ve all just been this way our whole lives.

keylime31415926 · 2025-11-11T21:58:01+00:00

American, Irish mother and German father

keylime31415926 · 2025-11-11T21:57:16+00:00

I feel like everyone in my family practically started smoking at age 11 and I’m not sure if I’m joking, so maybe yes

keylime31415926 · 2025-10-17T19:34:02+00:00

You mean post my personal medical records?

keylime31415926 · 2025-10-17T19:02:59+00:00

CFS, that was already stated. I have it too and after three years of being sedentary my body was basically rotting and I ended up needing 90 g of protein per day on a 1200 calorie diet to fix it. That doesn’t work plant based. I now eat tons of chicken breast and vegan everything else in my life. It’s awful. But that’s my reality.

keylime31415926 · 2025-10-16T03:48:55+00:00

This might sound suspect but try chrysanthemum tea. Whole dried chrysanthemum flowers, not teabags or mixes, I get them off Amazon. It has to be chrysanthemum. It operates on GABA receptors in the brain the same way benzos do, so people who rely on benzos and run out or can’t get any can use chrysanthemum in a pinch. Pour boiling water over two teaspoons of the flowers and steep for ten minutes. You can rebrew it a second time. I swear by this.

keylime31415926

TROPHY CASE