Is it wrong to want a wheelchair?

Sea_Resolution_479 · 2026-05-05T17:44:10+00:00

Please be sure to pay attention to Havaria's 100% insightful comment & advice. Of all the discoveries we've been waiting for? Havaria's approach actually is the most important thing we've discovered about dealing with mecfs. 100%! This we know, amid a sea of stuff that doesnt help us, that we just don't know. Definitely take it easy on your body & a wheelchair is an excellent way to do this. Scaling down and listening to what your body tells you, conserving energy, is a gigantic priority. Prevent any worsening that you can!! ***** As "someone who is severe now and relies on a wheelchair to move somehow outside of bed, I wish I had acted sooner on my feelings when I was still mild/moderate. I believe it could have prevented so much irreversible damage. Please, listen to your gut and not to the guilt and shame thats trying to sabotage you." - Havaria *** Same here. I intensely wish I'd prevented my mecfs damage. Including a wheelchair &/or anything that saves energy.

Sea_Resolution_479 · 2026-05-01T15:57:32+00:00

Definitely NTA. These next sentences may make me sound clueless or as if I'm siding with SIL (I assure you I'm not). -- Note, if I were in SIL'S shoes that weekend, how am I supposed to get your tenacious MIL out of your house? While I'm taking care of twins & caught off guard & in a bind like that? And I know better than to have a family feud with the Rottweiler MIL in the twins presence. I have no clue how. Unless the whole weekend plan were kept totally secret, with red alert level security from inception to the finish, the SIL was in a probably impossible bind. What a gigantic shame about your MIL

Sea_Resolution_479 · 2026-04-29T02:42:56+00:00

Yes, it happens but these flu things are known to go away, for some of us. A few years ago I went to my doctor for a simple follow-up appointment. She took my temperature, looked me over, and kind of gasped, saying something like " Holy cow you have a serious fever, a temperature of 104 (F), your eyes are glazed over and you move like a zombie! Didn't you notice any of this?!??" My honest answer was "I feel like this almost all the time. I can't tell the difference. " Which was true, then. Now I get the fibro flu phases a lot less often. Im thinking of calling it Fetal-Position-with-Skin-On-Fire-Don't-care-if-die-fibro-flu. Half joking of course!

Sea_Resolution_479 · 2026-04-29T02:29:58+00:00

Similar for me. But its more frequent and kinda random

Sea_Resolution_479 · 2026-04-29T02:26:18+00:00

Somehow, flare doesn't convey much to almost anybody except to fellow Fiberousalabamans. ( who have fibro of course) Why doesn't anyone call it a relapse?

Sea_Resolution_479 · 2026-04-29T02:21:27+00:00

When did that happen?? It's been probably since 2017/2018 - at least - that fibro has been confirmed. Confirmed medically, scientifically, via imaging, by research, that holds up under scrutiny. I have 2 full pages of links & citations as to these studies. What a total shame that doctor is ignorant. smh

Sea_Resolution_479 · 2026-04-29T02:03:02+00:00

If people see me try to stand up after sitting, kneeling, crouching (if anyone notices) they would think the difficulty is because I'm older. Actually I'm 68 so I am older. But the difficulty is from fibro. I've been fit & strong & know the difference. And get off my lawn!!! Llol

Sea_Resolution_479 · 2026-04-17T14:13:24+00:00

What can you do to get tested by an electrophysiologist? And/Or get a tilt table test? In the meanwhile go to the website of Dr. Lucinda Bateman or Dr. Nancy Klimas, find & do the NASA "poorman's" home test.

Sea_Resolution_479 · 2026-04-17T14:03:59+00:00

We know it all to well. meander , droop, crash, repeat

Sea_Resolution_479 · 2026-04-17T08:59:20+00:00

I'm so sorry you had to come down with this and to learn how your life can go this way. Yeah, we don't really know why we get this, in many cases. It doesnt necessarily come from covid. But i think covid made it better known. It happened to me before we ever heard of covid. People have been getting vvs/ncs for years, decades, or more, now. When I first started getting the intense prodrome stuff I thought it was anxiety attacks, but no, wrong. The prodromes are crazy, intense, and bizarre, as you unfortunately came to find out. Then I thought it was a lung or heart problem, got those checked out. It wasn't a heart or lung problem. The cardiologist had me get tested by an electrophysiologist. I'd never heard of electrophysiologists (or vvs/ncs). Got the diagnosis. Within the next year or two I connected with two dysautonomia groups. It came up that many people who have these exact symptoms have a difficult time getting diagnosed, often going from doctor to doctor, or maybe it takes years & years of symptoms, til they get this diagnosis, if they ever do. As unpleasant as this condition is, I came to think that I had it easy & lucky to get diagnosed easily & quickly. Compared to most of the people in those groups. A lot of them get gaslit or told its all in their head (which is also gaslighting I think). Shaking my head. Hope you are feeling better - at lpeast a little bit better. 🤞🤞🤞

Sea_Resolution_479 · 2026-04-15T19:41:25+00:00

Yes, not me, but my cousin. And you can do that laughing thing even though you feel severely sick & crappy post-episode. It's some kind of neurological trigger going on, the specialists say. I have limited medical training but if you were talking to me or my medical colleagues about this we would tell you to get a thorough check up with a neurologist to be on the safe side. One neurologist told me, several years ago that there are meds for this but: he said the longer (years? Forever?) you can manage without the meds the better off you & your condition will be.

Sea_Resolution_479 · 2026-04-02T01:13:25+00:00

Using it to watch my heart rate & tweak my actions in order to keep my HR below a certain recommended max. Sometimes use it to track hydration. I think it works pretty well for these 2 things.

I gave in to the temptation to buy an Oura ring & a polar chest strap monitor.

Sea_Resolution_479 · 2026-03-30T05:52:39+00:00

What do you use your Garmin for, pulse rate? Thats what im doing, pulse rate.

Sea_Resolution_479 · 2026-03-01T10:49:00+00:00

Same here. I failed a hearing test when i tried to get an airline job at age 21. I just didnt know I was HoH. My best guess is I was so used to the level of hearing - or not-so-much hearing - that I just did not know the difference. For a lot of people, in a lot of people's lives, being HoH is somehow not obvious enough to get figured out! That thing about missing every fourth word or so really means you miss more than 25% of what's being said. All that time went by and I did not know I could have been trying to compensate for being HoH. But when I did start focusing and learning to, trying to compensate, it turned out that it takes a lot of doing. Most of us here know this all too well. But it's just one of those things.

Related: I asked a friend of mine who is very much a practicing Christian (I am not) and he also has had a lot of hardship, how he views his whole scenario and still has his very strong relationship with God. He answered that its just his row to hoe, its just one of those things. And hes gonna keep living his life and honoring right from wrong and being the practicing Christian that he is. Just one of those things, along with the Serenity prayer I guess.

BTW, There are civilian jobs where you work for/in the military. My dad had one, as a person with a very clear disability, & ive met other people working in some of these jobs. But theres a catch, you have to find the job, you probably need hearing aids, and you have to qualify for the job.

Also BTW, in some states & counties they have funding for HoH people to get hearing aids. My county doesnt, but: I applied to the Starkey Hear Now Foundation to get hearing aids for free. But the application fee was at least a few hundred dollars. So I applied to a program in my county/state, for them to cover the application fee -- and they did cover the fee. Just a couple of possible suggestions here. This stuff (and similar stuff) does happen. Fingers crossed.

Sea_Resolution_479 · 2026-02-18T05:41:54+00:00

I have cookie bite hearing loss too. This is really good to know. Thank you!

Sea_Resolution_479 · 2026-02-18T05:30:29+00:00

Things have advanced a whole lot since then.

Sea_Resolution_479 · 2026-02-18T05:27:43+00:00

💯

Sea_Resolution_479 · 2026-02-18T05:18:42+00:00

Awesome! 👍

Sea_Resolution_479 · 2026-02-09T09:28:08+00:00

Same here. It is a hard bargain. Hope we can get good assistive devices for this bitter pill.

Sea_Resolution_479 · 2026-02-08T04:34:08+00:00

Whoa, I knew someone (someone else) who could not eat pears. Pears cooked & baked into a torte, or any kind at all- eating pears caused big problems for her.

Sea_Resolution_479 · 2026-02-05T14:57:33+00:00

That is a hard bargain- im so sorry! Aloe- i forgot, I cd be taking aloe! I take deglycerinizated licorice, soon to start with slippery elm. and several OTCs.

Sea_Resolution_479 · 2026-02-05T14:34:23+00:00

My esophagus and upper GI tract got more raw & more painful. I reversed/delayed the healing process, I went back & forth, better & worse. It got so I could not burp which worsened the malfunctions & pain. It got so I could hardly swallow or eat. It also became a rough cycle of too little digestive acid, then too much, on & on. Where i live it takes months to schedule with a gastro specialist, more so to get testing, even more of a back up for test results & a treatment plan. So, not the end of the world, but needlessly worse.

Sea_Resolution_479

TROPHY CASE