Moin 👋
Tagesstart 2.0 ✔️
Nach einer Nacht erneut mit durchschnittlichem Schlaf und 1 mittleren Schmerzphase war Tag 1.0 fast annehmbar.
Mit ☕ die Fatigue vertreiben zu versuchen. Die ist jetzt mittelstark, der Zwischenschlaf brachte milde Linderung.
Ob der Kaffee noch mehr ausrichten kann? ☕🙏🍀
Jetzt zu dieser Zeit, keine Schmerzen, was allerdings angenehm ist. 🙏 🍀
#MECFS #gm
#ME-CFS
Die schriftliche Handreichung für Lehrkräfte, Eltern und Schulen enthält Wissen zur Erkrankung ME/CFS, konkreten Hilfestellung und Unterstützung zur Sensibilisierung im Bereich Bildung und Teilhabe.
Außerdem sind Fortbildungen und weiteres Lehrmaterial mit Hilfe der Spenden geplant.
Unser Ziel: Unterstützung und Teilhabe trotz schwerer Erkrankung für Kinder und Jugendliche im #Bildungssystem.
#MECFS #LongCovid #Teilhabe #BildungFürAlle #Fatigatio #VisaVie #Spendenaktion #Plothouse
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Subject: sharing my novel ways of keeping cool in hot weather with ME/CFS, dysautonomia, POTS:
When I’m in warm environments my body doesn’t usually tell me when I’m too warm. It doesn’t start sweating or anything like that and I have no conscious awareness of it whatsoever. Instead, I start to feel deeply unwell and very quickly. This is very confusing. Due to being autistic as well, this can lead very quickly into overwhelm which results in the exhausting and humiliating experience of an autistic meltdown (an involuntary response to overwhelm that is physically exhausting to experience).
I only discovered all this by accident a few years ago (after experiencing it since I got ME/CFS 15-16 years ago!)
Now I know about it, and if I remember, I can take steps to deliberately cool myself down as quickly as possible. (And even prevent it in the first place!)
When I do this, it feels just like a miracle cure! I go from feeling so awful I am genuinely close to calling an ambulance, unsure when I’ll collapse… to perfectly fine again and wondering what all the fuss was about!
There are some barriers stopping me from cooling myself off, though. These are:
- Genuinely having no clue I’m too hot because symptoms are totally different to “normal” feelings of being too hot.
- Dependence on my memory to link what I’m experiencing with needing to cool down (hello to my ADHD and brain fog in ME/CFS too!)
- When this happens, I usually feel like I’m currently at a good temperature. I often say at the time that I feel like I’m already at the “perfect temperature”, “just right”, etc. Plus, I hate the sensation of cool air on my skin (feels like glass shards to me) so my instinct here is to fight against my knowledge that I need to cool off. But, instead, I need to bring awareness to all this to fight my instincts.
However! I have found something that is a good in-between and works more quickly than taking clothing layers off or finding a cooling fan, etc.
I have discovered that it is my head that needs to cool down most of all.
So, now, I will get some cool water and wet a cloth, holding it against my face. Then I’ll wet the top of my hair a little (so it can cool me like sweat does). Only then I’ll start to use the cool, damp cloth on areas where blood vessels are closer to the skin, but I will do this gradually so I don’t shock myself and I keep returning to cool my forehead, face, etc: neck, upper chest, inner wrists, inner arms, inner ankles, inner lower legs.
And most recently, I decided to explore head cooling caps to help with this even more.
I found this (pictured) cooling gel cap that’s made for people who get migraines or headaches. You can get various designs, but this one can reach down over my eyes, over my ears, or I can wear it higher, like a head band. Plus I can pull my hair out the hole at the top if I need.
This cap has a cooling sensation even without putting it in the fridge or freezer. But I will have it ready in the fridge during the coming few days of heatwave here where I am in the UK. I’m hoping this will help prevent those crushing feelings of not being able to cope and things escalating to an autistic meltdown. (Also have various other conventional cooling methods like fans, etc, but they take longer to work.)
Edited to add price: can buy gel head caps for £5 - £20 in the UK.
#mecfs @mecfs #pwME #pots @actuallyautistic #ActuallyAutistic
From ME Research UK:
Using a dataset of over 2000 individuals with #MECFS, researchers investigated sleep reversal, where individuals are awake at night and sleep during the day. Those with sleep reversal reported greater symptom burden and functional impairment.
Read more: https://bit.ly/sleepreversalme
From @meresearchuk
Prof. Brett Lidbury and colleagues have published the findings of an ME Research UK-funded study in which they found associations between ME/CFS and several genetic variants, including genes involved in brain function and neuroblastoma https://bit.ly/4l76mLz
From @meresearchuk.bsky.social
In a piece written for 'The Conversation', Dr. Annesley, currently working on research funded by ME Research UK, emphasizes the physical nature of the ME/CFS.
Read more: https://tinyurl.com/yuepfxaj
From @meresearchuk
The UK weather has been hot, and those with conditions exacerbated by heat are likely struggling. One such example is orthostatic intolerance, common in ME/CFS, where the body fails to compensate for an upright position.
Read more: https://bit.ly/4kSdpqZ
From @meresearchuk
Australia's National Health and Medical Research Council - NHMRC has never before issued or approved guidelines for ME/CFS but the process has now begun with dissemination/publication due in March 2028. https://tinyurl.com/2s443h56
New Publication: OMF’s computation team identified metabolic pathways that are dysregulated in #MECFS & #LongCOVID. They also identified a combination of L-ornithine and L-aspartate (LOLA) as a potential treatment to explore in future clinical trials.
Kind of grateful for the Junuary weather. It meant I could plant some new starts instead of saving some energy so I could water. Even managed to get a baby artichoke in the ground.
Moin 👋
Tagesstart 2.0 ✔️
Nach einer Nacht mit durchschnittlichem Schlaf und 2 mittleren Schmerzphasen war Tag 1.0 nicht so dolle, da es leichte Kopfschmerzen gab.
Mit ☕ die Fatigue vertreiben zu versuchen. Die ist jetzt mittelstark, der Zwischenschlaf brachte leichte Linderung.
Ob der Kaffee noch mehr ausrichten kann? ☕🙏🍀
Jetzt zu dieser Zeit, keine Schmerzen, was allerdings angenehm ist. 🙏 🍀
#MECFS #gm
Not actually feeling better turns out.
Probably nothing left but to get really fucked up and watch another day disappear #Recovery2025 #DarkSojourn #MECFS #ChronicIllness
Winter is coming, and that's a real thing here. There's so much to do so that we stay warm and do that I don't have to trot my pee bottle outside 1-2x per day. And I'm too sick, using my energies to do bullshit things instead of improving my life and maybe like, you know, writing?? Like I want to and never get to? Even though I don't even work full time and writing is my career now??
🧵
I've had a very rough couple of days. Things happened where I need to drive my son around again. I had to take him to an appointment on Monday, which pushed back my own projects, plus I was having my second period for the month and my cramps (which normally don't happen on the 4th day of my period) we're 7-9 pain range. So I white-knuckled that trip, over-paced, and was physically devastated. The next day I was both physically and mentally devastated, and I had to take a sick day from work, pushing my projects back even further, which led to yesterday being not much better (at least I billed work).
I kept getting new problems pulled on me during this time, so not only was I not moving forward, I was getting pushed back.
And then in that mental health crash (brain weasels are back, dissociation for hours at a time), I discovered that the deer finally got into the garden again, and ate most of the lupines including the lovely bloom I never got a full picture of, and the entire strawberry down to the nub. The kale survive, but they are struggling anyway.
So I've given up entirely on the garden this year. The lavender is uneaten, but I waited too long to plant it and it's basically a dry stick. (I wouldn't eat it either.) It might come back next year if the roots continue to grow, so I'll keep watering it I guess.
I probably feel better today, since I seem willing to talk about it, but also in the night I did that thing to my shoulder that I do stretches religiously every day to prevent.
I do put a lot of work into maintaining what's left of my health, but like. Why.
Emotional health has been great up till this week regardless of whatever else is going on. Now I have a bad attitude.
🧵
#PEM ist für viele Menschen oft schwer zu begreifen. Daher habe ich einen Vergleich mit einem Handy-Akku beschrieben, den ihr hier lesen könnt:
https://longcovidonline.blog/2025/06/24/pem-jedes-zuviel-wird-bestraft/
I picked up some cute rainbow knitted wristbands recently and by pure coincidence learned that when my ME makes my hands hurt, they help reduce the pain.
I have no idea why. Cheaper (they were about £7) and more effective than any painkillers I've taken.
Symptom: it feels like Cranial Pressure?
https://www.illmarks.com/symptom-it-feels-like-cranial-pressure/
#art #bodyHorror #cfs #chronicIllness #chronicPain #chronicIllness #chronicPain #Dysautonomia #headache #longCovid #mcas #me #mecfs #medicalArt #migraine #MillionsMissing #pwLC #pwme
Moin 👋
Tagesstart 2.0 ✔️
Nach einer Nacht mit schlechtem Schlaf, 1 heftigen, 1 starken und 2 mittleren Schmerzphasen war Tag 1.0 auch heute zum vergessen.
Die Fatique ist jetzt mittelstark, der Zwischenschlaf brachte milde Linderung. Ob der Kaffee noch mehr ausrichten kann? ☕🙏🍀
Jetzt zu dieser Zeit, keine Schmerzen, was allerdings angenehm ist. 🙏 🍀
Ich probiere mich mal, in so was wie Tag wieder zu kommen. 🙏🍀
#MECFS #gm
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