Kim

25 | Living with ME, endometriosis & … | Tweeting to find some connection | She/her

[Kim @kim_seys]

“Zijn dagen waren nu uren: uren zonder pijn en uren met, en de onvoorspelbaarheid van dat schema - en van zijn lichaam, al was dat alleen in naam van hem, want hij had niets ervan onder controle - putte hem uit, en hij sliep en sliep, terwijl de dagen onbewoond vergleden.”

[TheDisabilityEnthusiast @twitchyspoonie]

We need to treat the doctors who think things like EDS, POTS, ME, MCAS, etc., are mental illnesses from TikTok like they're anti-science because they are. They need to be stigmatized to the point that they're seen as unacceptable to hire or have on staff.

[Nele @NeleHelena]

It's not okay that for insomnia as a consequence of chronic illness and physiological processes in the body healthcare doesn't have anything to offer but sleep hygiene.

"Don't sleep during the day" okay I'm not doing that, I physically can't. 1/

[Kim @kim_seys]

@Ramyisback @NeleHelena So cute 🤗 happy for the both of you!!

[Kim @kim_seys]

@NeleHelena Relatable! The grief of declining hits different. Also 11 yrs 😳 already. Sending love 🫂

[Nele @NeleHelena]

I think illness declines can feel worse than the start of illness. At the start I had no idea what happened but I thought it would get better. When the first decline happened I realized that not only it wouldn’t get better, it can get worse. That was so emotionally lonely. 1/

[Nele @NeleHelena]

The things healthy people complain about are my unreachable goals.

I saw someone complain that they wake up once every night for half an hour and I was like “yeah so?” I almost forget how abnormal it is to only get a few hours of interrupted sleep at night.

[Nele @NeleHelena]

It baffles me how easily incorrect psychosomatic diagnoses can get into your file without a diagnostic process.

"Oh this person that I don't know + only saw for 2 minutes has physical symptoms that I don't understand. Let's put *my own psychiatric pet diagnosis* into their file"

[Kim @kim_seys]

@NeleHelena Woops a bit late, but happy birthday!!

[Nele @NeleHelena]

Is there anything more sad and unprofessional than doctors going online to bash patients. You think you're right but all you're doing is showing that you have zero awareness of how being educated + working in a system with many systemic issues has influenced your bias.

[Nele @NeleHelena]

Who in the ME/dysautonomia community also has akathisia? I'm starting to realize that what I call the adrenaline might in fact be akathisia? My bf thinks it is after I've sent him a video of me moving when it's at its worst.

[Nele @NeleHelena]

That's one of the reasons why diagnosis such as Somatic Symptom Disorder make no sense.

Excessive thoughts are required to be diagnosed with this, but people with normal thoughts and emotions in response to what's happening are diagnosed with it all the time. 6/

[Nele @NeleHelena]

There is no way of excluding all physical causes before you diagnose someone with a psychosomatic illness. We don't know all possible physical causes.

We don't even fully understand the healthy body yet, let alone everything that can go wrong in it.

[Nele @NeleHelena]

When I worked at victim support we always made sure to tell people that their emotions are a very normal response to something abnormal that happened. 

I've never heard this in healthcare as a patient. While it's pretty normal to feel things about the symptoms you experience. 3/

[Kim @kim_seys]

@NeleHelena Sleep is such a scam 😅

[Kim @kim_seys]

@NeleHelena How lovely! I understand that you miss this. Its so different when putting on clothes becomes a chore instead of a choice in style and personality

[Nele @NeleHelena]

My friend with #LongCovid who isn't on twitter has a question about guanfacine side effects and really needs some advice ⬇️

"for those who tried guanfacine for pots and got sad/depressed as a side effect.. did this side effect go away for you eventually? i’m on day 4 and...

[Nele @NeleHelena]

Yep it's still this bad. Look at how little dialogue women had in this year's oscar nominated movies.

[Nele @NeleHelena]

Acute covid can lead to different outcomes in different people. One of those outcomes is ME.

ME is an outcome that can be triggered by different things. One of those triggers is covid.

It's really not that hard. 2/

[Nele @NeleHelena]

Comparing #MEcfs and #LongCovid is like comparing apples and fruit.

Long covid is named after a trigger. ME is named after an outcome. 1/

[T @Yrrepmot]

Who else with #MECFS or #LC has Restless Leg Syndrome?

I think this is what I’m experiencing. It only happens at night before sleep. And luckily it doesn’t keep me awake anymore but it use to.

It’s such a weird sensation - the compulsion to pull, stretch & pull your legs. Can’t be ignored. I’ve had it for as long as I can remember.

I’m wondering how common this is?

Has anyone found anything that helps?