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gehrluke, in We're not sick, we're a social phenomenon

I can recommend a walking desk to everyone. It is really nice!

TwoCubed, in We're not sick, we're a social phenomenon

Who the fuck works when in bed? I work at a desk, in my own little office/room. If I didn’t have that, I’d be going to the office way more often.

BrightCandle, in We're not sick, we're a social phenomenon

Bed rotting has always struck me as the term the press and government have decided to apply to all the Long Covid patients to cover up the enormous damage that has been done to peoples health. Now Long Covid ME/CFS outnumbers ME/CFS from all other sources about 5 to 1, possibly a lot more. The level of suffering out there in the world now is astounding and this is how our press and governments are responding to a growing crisis.

Spendrill, (edited ) in We're not sick, we're a social phenomenon

Being told to return to the office by millionaire/billionaire CEOs didn’t work so now we’re on to plan B, get the media to try to stimulate self-doubt and guilt in the workers, use their own feelings against them. Disgusting.

Obviously a reminder of the basic principle involved is needed, pay particular attention to the second panel: xkcd.com/150/

Maddier1993, in We're not sick, we're a social phenomenon

Bed rotting used be pretty much that but in addition to gangrene due prolonged non-movement…

Kornblumenratte, in Family is sick and now I can play that nice game of

On a more serious note:

  • Flu gets worse in the afternoon, PEM usually better
  • Flu & friends usually cause some symptoms PEM does not – like soare throat, running nose, coughing, fever, while typical PEM-symptoms might be less prominent.
  • For me, it just feels different. I’m just fighting my first severe flu-like infection since CFS started, and it feels completely different even when the words to describe it are almost the same.

ymmv.

Gute und rasche Besserung für alle!

Kornblumenratte, (edited ) in Family is sick and now I can play that nice game of
Kornblumenratte, in Long Covid Awareness Day: Wir sind alle vulnerabel. Am 15. März ist Internationaler Long Covid Awareness Day. Millionen Betroffene warten auf Therapien. Wie steht es um sie?

Den gibt es? Bei uns auf der Station hängt eine Karte, ich dachte die wäre ein Witz. Wobei ich fürchte, dass sie tatsächlich einer ist.

Meiner Meinung nach haben wir z.Zt. > 10 % Patienten, die eine depressive Verarbeitung ihres Post Covid haben. Hoffentlich schaff ich es mal, eine fundierte Fortbildung vorzubereiten. Fühl mich irgendwie damit überfordert.

JohnnyEnzyme, in ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

As a middle-aged bloke, I think I would have traded this disease for having no legs, but average energy. Sure I would have been cut off from various exercises and activities, but I also would have been able to pursue a career, start a family, have an easier time with relationships, and have my share of hobbies, presumably.

An example of one of the things that really crushed me was my pursuit of guitar. About 25yrs+ ago I bumblingly started with simple tutorials and internet tabs, and after a couple years found myself really humming along, my learning curve surprising me. Unfortunately, only a couple years later I found that I kept injuring myself via playing, sometimes via throwing my neck or back out, or more often my finger joints hurting more and more, making it harder and harder to fret properly.

Unlike sports, which I was able to play in small doses in my 20’s, and which are a huge struggle for me today, I thought guitar would be something I could enjoy the rest of my life. Instead it became yet another pursuit in which I pushed through my CFS difficulties, only to be betrayed by my own body.

These doctors claiming psychosomatic causes are functionally nothing but quacks when it comes to true CFS/ME.

Kornblumenratte, in Long-COVID mit Antikörpern behandeln?

Viral persistence is a factor, at least for some. So – good news. At least for some. Sometimes. Perhaps.

neidu2, in I somewhat find myself represented in this almost 50 years old sketch

The nurse stabbed you?

bjoern_tantau,
@bjoern_tantau@swg-empire.de avatar

I got better.

Kornblumenratte, in My new hymn

Jaa – irgendwie. Aber das Schütteln am Schluss – wo ist die Geheime Sondereingreiftruppe der Internationalen Vereinigung der Katzenfreunde, wenn man sie mal braucht?

Kornblumenratte, in Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study)

So the quip “it’s all in your mind” might be true after all. Just more hardwired than these quippers think.

liv, in Anyone else's acceptable temperature going down?
liv avatar

Temperature is a big issue for me and it worsening like that is usually a sign my body is under more strain (overdoing it, fighting off a random virus, too much PEM).

Issues regulating our core temp are not unusual for me/cfs.

I'm worried for you in the summer too. It's just been summer here and I do things like fill a squirt bottle with icy water and spray it over myself. Can you get some fans?

Reucnalts, in Anyone else's acceptable temperature going down?

So you left your wife alone so she can juggle two kids, the household, her elderly parents and work, so that you can lay under a blanket most of the time?

I think i am misreading your statement :/

liv,
liv avatar

Our partners are affected horribly by our disease.

bjoern_tantau,
@bjoern_tantau@swg-empire.de avatar

Look at the community you’re in. I literally can’t do much else. If I was at home she would have to put up with me as well.

Reucnalts,

Holy Shit I am sorry. I didnt really look and thought it was “asklemmy” or “unpopular opinion” without checking. I am very sorry for that negative comment. Should have checked the community before posting.

bjoern_tantau,
@bjoern_tantau@swg-empire.de avatar

Don’t worry. 😅

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