🟢 ME/CFS-sensible Pflegeberatung bedeutet mehr Aufwand und geringerer Gewinn - und ich liebe es trotzdem (oder gerade deshalb?!).

ME/CFS-sensible Beratung sollte kein Sonderfall sein.

Sie sollte selbstverständlich sein.

#Pflegeberatung #MECFS #MECFSAwareness #PflegeberatungAufTour

Looking Back: 30 Years of Shame and Finally Understanding My Experience

I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.

Doctors kept telling me it was all in my head.

They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.

Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.

Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.

So I started doubting myself.

I felt weak.
I felt crazy.
I carried a lot of shame for something I couldn’t control.

The fatigue and exhaustion that comes with this illness is crushing.

It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.

My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:

The problem isn’t simply how much I sleep.

It’s that my dysautonomia prevents the sleep from being restorative.

In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.

Only recently have I finally understood what’s really happening.

What I have is dysautonomia.

My autonomic nervous system doesn’t regulate properly anymore.

That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.

ME/CFS always felt like an incomplete label to me.

Yes, I crash after exertion.
Yes, sleep doesn’t fix it.
Yes, my body has never functioned the way people expect it to.

But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.

The only thing that actually helps is pacing — staying within my energy envelope.

I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.

After 30 years, I’ve finally stopped blaming myself.

That alone has been healing.

I’m sharing this journal entry in case it gives someone else a little more language for their own experience.

And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.

Our energy is extremely limited.

We have to be very careful to avoid crashes.

Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.

Sometimes understanding does not cure the body.

But it can begin to release the shame.

And after so many years of being misunderstood, that matters.

"What can be done to ensure ME/CFS is treated as a biological illness?

⬇️

Fund more high-quality biomedical research into ME/CFS"

Support ME/CFS research by an organisation of your choice like:

https://omf.ngo/

https://mecfs-research.org/en/

More can be found here:

https://crunchme.notion.site/charities?v=1592a60c499681078a41000cf32cb946

#mecfs
#mecfsawareness
#mecfsawarenessmonth

"Research shows that ME/CFS is a biological illness – so why do some people still think it is psychological in nature?
(..)
The article notes that, throughout history, many biological diseases have been dismissed as psychosomatic. While the majority of these diseases (...) are now accepted as ‘biological’ by medical professionals, the same cannot be said for others, including ME/CFS."

https://www.meresearch.org.uk/research-shows-that-me-cfs-is-a-biological-illness-so-why-do-some-people-still-think-it-is-psychological-in-nature/#:~:text=Current%20evidence%20shows%20that%20there,psychological%20in%20nature%20 (2024)

Unfortunately still relevant..🙄

#mecfs
#mecfsawareness
#mecfsawarenessmonth

RE: https://mastodon.social/@desater/116561087413139571

Noch einmal für alle, die es eventuell wegen dem englischen Post nicht gesehen haben. Heute ist ME/CFS Awareness Day. Auch bei PastPuzzle.

Ich habe heute schon unglaubliche Nachrichten von Betroffenen und Angehörigen bekommen, die mich teilweise ehrlich zu Tränen gerührt haben.

Es wäre schön, wenn ihr euer Umfeld auf diese Krankheit aufmerksam macht.

#pastpuzzle #mecfs #mecfsawareness

Today is World #MEAwarenessDay

I wrote a short story earlier this year as an attempt to get across how devastating the disease can be: https://mentalplayground.co.uk/posts/the-mansion/

If you would like to know more about ME/CFS (and today is a good day to do that) then this is a good place to start: https://knowmecfs.org/

If that looks overwhelming, imagine what having it is like!

#mecfs #pwme #mecfsawareness #disabilities #myalgicEncephalomyelitis

I was asked if I could use PastPuzzle’s reach to raise awareness about this terrible and overlooked disease. Of course!

Join in on the daily history game and spread the word to your friends and family: https://www.pastpuzzle.de

#mecfs #pastpuzzle #history #mecfsawareness #MECFSAwarenessDay