"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
So I need to make more space and lose more of my own living space to move the AC so that the temp differential doesn't kill the TV that I can not afford to replace.
I needed to get spoons to get up and do this, as I am bed-bound.
My 11 yro is angry that I am not doing what he wants, and would not let me do what I needed to get spoons, he stole my spons.
And now he is livid at me, because I have less spoons than I started the day with, I can't do now, hell I can't even eat now.
And he is screaming at me blaming me for not doing what needed to be done so he could get what he wanted in the first place.
I am so exhausted and overheating with my meds; if I overheat, bad things happen.
And he just doesn't get it.
As far as he is concerned, it's all my fault that his day and plans, which he never shared, to begin with, are ruined.
Developing effective strategies to optimize physical activity and cardiorespiratory fitness in the long Covid population- The need for caution and objective assessment
Selbst Mediziner werden mit #LongCovid nicht ernst genommen.
"Entweder man ist eine Simulantin, hat eigentlich gar nichts, sucht nur Aufmerksamkeit. Oder man ist schwächlich. Erschöpft von der Pandemie, den Krisen der Welt [...] Oder drittens, man ist übereifrig im Leben und hat einfach einen Burnout. In jedem Fall ist man selber schuld."
My last day at work has been scheduled. In just 3 shifts, my 25 year career in #proAudio comes to a screeching halt while I enter the terrifying world of #disabilityInsurance.
All this because I caught #covid19, once, at work, in June 2022, despite having 4 vaccines.
The first 12 weeks were bad. Then I got a little worse each week. My weight tanked. I am 6' 3 and was a little over 200lbs (my normal weight). A year and a half later, I presently weigh 145 and dropping.
I was diagnosed with #meCFS, #PEM, #POTS, and am still having tests (CT, gastroscopy, biopsy) done on my GI.
#LongCovid is very real, and has robbed me of the luxury of clear though, easy movement, and a "normal" life.
Don't get Covid. Don't get Covid again. #WearAMask, please.
It’s been nine days since we took a drive to look at the scenery and the #PEM is starting to fade a little. This time it felt like I had just had surgery and was having difficulty with the anesthesia, and then had gotten an infection on top of that. I felt poisoned—nauseated, abdominal pain, muscles screaming, feeling drugged—as well as my body aching, exhaustion, sleeping 16 hours a day, muscles weak, unable to think. Another lapse in time. So many holes in life with #MECFS. @mecfs
Hey liebe #MECFS Bubble, hat hier jemand Erfahrungen mit Reha-Anträgen gemacht, bei denen man vom Arzt als „nicht rehafähig“ erklärt wurde, aber die Rentenversicherung einen trotzdem auf Reha schicken möchte in Kliniken ohne entsprechendes Konzept?
Widerspruch möchte ich sowieso einlegen, da auch angegebene Kliniken nicht beachtet wurden.
#MEAwarenessHour
More #PEM awaits me over the next who knows how long. It never gets easier.
It’s never predictable anymore. The #RollingPEM I’ve developed as a result of so much overexertion during the last few years has made it into pain that I’m used to but never stop fearing.
If you don’t experience #PEM (post-exertional malaise), it’s hard to understand just how overwhelming and painful it is. Why do my muscles hurt so much when I stayed in the car during our entire drive on Saturday? Why can’t I lift my legs into bed? Why do my arms hurt? Why do I keep bursting into tears? Why am I nauseated and having trouble following a TV show? Why does seeing the outside world from a car cause me to feel like I have mono all over again? #MECFS
‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’
Striving for fitness is usually healing. But for most people with long COVID, it can be toxic.
This is extremely important for those with Long COVID and ME/CFS. ""Experts warn that exercise can "harm" and other approaches are needed"" Spread everywhere! You may help save lives.
I noticed this issue in myself long before I was diagnosed with ME/CFS. Nobody would listen. I kept getting told I need to exercise more. As a former farmer who was raising bull breed stock, getting enough exercise wasn't the problem. Too much was.
"By taking biopsies from long #COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
I like working on projects that enable marginalised persons to take back their autonomy on and offline. I subscribe to #diy and am a voracious #autodidact. I make #bots for #mastodon and the #fedi. I'm building a replacement for #bandcamp and #spotify.
I’ve been using the built in Heart tracker app, a sleep tracking app w/ HRV, and Cardiogram to help monitor my #PEM … but I still overdo it resulting in a chain of crashes and resetting my baseline rather than moving on a recovery path. I’ve been stagnant for 6-8 months. (18 month journey)
I’m curious about your experiences. Pls feel free to share below.
"Oxygen extraction by the body’s tissues was compromised in patients who had symptoms of #exerciseIntolerance after #COVID"
"Patients are told that their symptoms are a result of deconditioning, or decline from lack of physical activity.
Our findings contradict that hypothesis."
So #disability fedi, what do you all recommend for holding a laptop in bed when you're #bedbound? I need something to hold my laptop at an angle to raise the screen up but retain the keyboard at the same height so I don't need to lift my arms up more than I currently do. I really think something to hold my lappy like this photo would help me. I get a bit of #neckstrain while using it resting on my chest atm. I want something I can use for long periods cos #pem from #mecfs keeps me in bed a lot