Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new #chronicIllness. The author does a great job portraying some struggles common to #MECFS and #postCovid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of #PEM. Plus, the suspense makes it a great audiobook.
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.
So, about crashing... "hitting the “wall” can happen doing everyday activities, such as going for a walk around the block, taking a shower, or doing housework." (Or having a dialogue, videoconference, an emotional outburst, watching tv, noises/music) A great article explaining current findings by scientists.
✅ Pace ⛔ Exercise
Following on from yesterday's post about research investigating the experiences of PEM in people with ME/CFS, we explore some of the themes addressed in the study from the rich descriptions provided by the participants, comparing day-to-day PEM with PEM experienced following exercise testing. Read more: https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-2/
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
Some days that autism dial gets turned up to 11. I started the day being upset because my favorite tea cup was dirty and even I could tell I was overreacting. I’m finally starting to pull out of #PEM after last Saturday’s drive and my tolerance for gestures vaguely seems to be pretty minimal. When #MECFS and being #ActuallyAutistic
collide, it’s rough. @actuallyautistic@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.
Zojuist #LongCovid in nieuws bij #EenVandaag: (eindelijk) start Nederlands onderzoek... particulier gefinancierd 👏🏼Aanvulling: het zijn niet alleen 90.000 bedlegerigen. Daarnaast vele 100.000-en die in meer of mindere mate beperkt zijn in hun leven.
My story:
Did muscle exercises (see figure middle column) from July 23 - Feb24. My physio didn't consider it wise to do endurance (my luck!)
Stopped in march due to growing muscle aches in arms. I did good while HBOT and build up strength, but this went away quickly after end (in 4weeks).
I liked the feeling of blood flow and endorfines while doing exercises. And mentally it gave me the feeling of 'doing something to get better'
Now I think I did a lot on adrenaline #LongCovid#pem @longcovid