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@guustweet
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#LongCovid since jan’21 ♿️ - tweets with brain fog, so pls bear with me - 📣 tries to advocate @NietHersteld - eager to learn - she/her - tweets in 🇬🇧 & 🇳🇱
Joined September 2011
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Pinned Tweet
This is🧵of some of the threads that I have made. (in 🇬🇧 & 🇳🇱)
I became active on twitter because of falling ill with
#LongCovid
. I’m mainly here to stay in touch with the community, to keep up with research and to advocate. 📣
Some of the stuff that I have posted on here👇🏻
I was recently asked to make a picture of my situation.
Took the picture, looked at it and turned to my mom: “Isn’t this a bit extreme?” She: “This is what you regularly look like.”
Which was a bit confronting to me as I do not often see it this way I think.
#LongCovid
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Lauren passed away at 1.55 pm.
She past quickly and peacefully. ❤️🩹🕯️
We will miss you so much lieve Lauren. 💛
#DagLieveLauren
#ReMEmberLauren
#MECFS
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Fuck guys. My friend is gone 😞
Still doesn’t feel real. I can’t believe that if I send her a message now that she will not respond anymore.
I will miss her so much.
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I was recently asked to make a picture of my situation.
Took the picture, looked at it and turned to my mom: “Isn’t this a bit extreme?” She: “This is what you regularly look like.”
Which was a bit confronting to me as I do not often see it this way I think.
#LongCovid
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Om 13:55u is Lauren overleden. Het ging rustig en snel. ❤️🩹🕯️
We gaan je zo erg missen lieve Lauren. 💛
#DagLieveLauren
#ReMEmberLauren
#MECFS
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What are your tips for hobbies for people with ability level ‘barely existing, always horizontal.’ ?
Asking for me.
I need a new hobby. Being alone with my thoughts all the time is becoming exhausting and boring.
#LongCovid
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The little spot I made for Lauren.
It’s over the top and funny (the bananas are an inside joke). This colour green was one of her favourite colours. Just like pastel pink for the 🌸.
I showed it to her and she loved it, she liked the aesthetic.
#DagLieveLauren
#ReMEmberLauren
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This is not what life at 25 should look like. I haven’t been able to leave the house for months. I miss the little things, I miss the big things. I miss living.
This disease affects millions. We need more research now.
#LongCovid
#LongCovidAwarenessDay
📷 by Lin Woldendorp
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“This is what disability advocates have said all along, not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times.”
Really great piece of writing. 👇🏻
"I had my health. I had a job. And then, abruptly, I didn't,"
@tomscocca
writes. The writer and editor writes about his journey that began with a mysterious swelling in his joints, then low blood-oxygen levels, and then an alarming muscle weakness.
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“Plague! We are in the middle of a f*cking plague! And you behave like this? Plague! 40 million infected people is a f*cking plague!! And nobody acts as it is.“
I think about this fragment often since I watched ‘How To Survive A Plague’
How many more will get
#LongCovid
?
’40 million people is a f*cking plague’ — Watch Larry Kramer speak out against AIDS inaction in 1991. Kramer died this week at 84
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Weird realisation.
I used to use this keychain every single day. It was always with me. Had my house keys, my bike key, etc. All my keys.
Now it is empty. I simply do not use keys anymore…
#LongCovid
🧵 under this tweet more unused things I used to use.
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After 1,5 week of isolation I seem to have dodged getting a second covid infection.
#LongCovid
I am currently really struggling with finding words and making sentences, not being able to say things how I would like to, but I wanted to post something. 🧵
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26 today.
Birthdays with illness can be hard. Birthdays when you have also just lost a friend may be even harder. But it also felt like the more reasons for me to not just let it pass, but to try to make a little moment of it, celebrate, 🧵
#LongCovid
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Lauren is that friend that sends you a handwritten card and a little parcel on the day of her funeral. So thoughtful and loving. 🥹😭💛
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I often wonder what keeps people with
#LongCovid
&
#MECFS
going. I think it’s the immense lust for life that people have, they want to live so bad - yet so often they’re judged as the problem being them not having any lust for life anymore. It’s such a painful misinterpretation.
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I’d hoped that I would sleep all day today. I took the highest dose of calming meds that I am aloud to take. But I woke up ‘early’ and cried immediately. Crushing heavy feeling immediately. Today is the first day that Lauren is not alive and I so don’t want that to be the case.
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Today is my dear friend Lauren’s funeral. She passed away last Saturday. She was 28.
Lauren had
#MECFS
and fought for advocacy. Her blog:
If you have the means, you could donate in her honour,to help move research into ME forward:
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It was shower day today. I shower as flat as possible in the bath, once a week.
Was looking forward to feeling fresh again but I now feel so so ill afterwards. Collapsed neck feeling, heart beating in my head, nausea.
Wondering if once a week is becoming too much
#LongCovid
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As I am going to the hospital on Friday, (for which I will be leaving the house for the first in more than a year) I decided to go into our garden for a quick test to see how I am handling daylight, as I spend my days in a darkened rooms for a reason. -
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Yellow is geslaagd! De ‘L’ is van het dekje af, ze is nu officieel een geaccrediteerde hulphond. 🎉🌻
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Appointment with ME specialist: I meet the ME criteria. Table tilt test: I have orthostatic intolerance.
#LongCovid
I already knew this would be the outcome but still thought I was making it all up.
Writing this in tears: glad to finally be believed and tested, but also:/
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Very special visitors today! 💛
Today Lauren’s parents came to visit me! They happened to be in the neighbourhood so asked if they could come round.
🧵
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#ZiekBOOS
Ik heb inhoudelijk nog niet echt gedeeld over hoe het beloop van Long Covid bij mij is geweest. Dus bij deze. Ik raakte besmet in jan’21, inmiddels voldoe ik aan de ME criteria, gaat er als ik sta 33% minder bloed naar mijn hoofd en ben ik bijna volledig huisgebonden🧵/
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One of the hardest things of this disease is that I feel like so am not able to fully express my personality anymore.
I am simultaneously living without existing and existing without living.
#LongCovidAwarenessDay
#NotRecovered
#LongCovid
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So yeah, that were some pictures from my ‘living loss’ I guess.
I think people often don’t realise how confronting it can be to see things that remind you of all you are no longer able to do. The ongoing grief.
This disease is unimaginable
#LongCovid
sucks.
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Her humour was 🔥 I have laughed so hard these last days. And cried lots as well, but all the time she made me laugh. One moment I was crying, one moment I was laughing. It was so great to have that sort of communication. Such a great quality of hers! Going to miss it so much.
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Mijn laatste keer uit huis was 3 juli, ik ging met liggend vervoer naar het ziekenhuis.
Daarvoor was het 11 december, toen wilde ik mee een kerstboom halen.
Na 3,5 jaar is er vanavond eindelijk een debat over
#LongCovid
daarom een 🧵👇🏻
#VerborgenPandemie
1/
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My dear friend Lauren will leave us this saturday 💔
She is getting euthanasia because her suffering with
#SevereME
has become unbearable.
I will miss her so much, but she deserves rest. We will let her go in love! ❤️🩹💛
Get to know her on her blog👇🏻
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It’s been a year.
#LongCovid
11 December 2022 was the last time I left the house myself. The only other time was in July when I went to the hospital with horizontal transport. I can’t believe it has been a year. I never thought that this was possible. 🧵
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I am loving the memes to get
@iamjohnoliver
and
@jonstewart
to cover the
#GreatestMEdicalScandal
#JohnVsJonVsME
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‘None of our 50 patients got their old life back with time and treatment.’
From a paper on Long SARS.
#LongCovid
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'Als je leven geen geschenk meer is, mag je het teruggeven'
Mijn lieve vriendin
@dutchlauren
zal binnenkort deze wereld verlaten vanwege ondragelijk lijden door ernstige ME. Ze vertelt erover in dit artikel. (Euthanasie)
Mooi stuk. Mooi mens. 💛
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This picture was taken exactly 1 year ago.
Last summer I was still able to go outside for some short moments a couple of times. My mom drove me to a place in nature and I would sit against the car. We mostly went during golden hour.
These were my favourite moments.
#LongCovid
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Over een maand ben ik 2 jaar ziek. 😔
Geloof me,
#LongCovid
wil je niet.
Als ik kijk hoe hard ik achteruit dender ben ik bang voor hoe het verder gaat.
Stay safe tijdens de feestdagen!
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sometimes the realisation that I will probably lose my whole 20s comes creeping in.
the fact that this disease is doing that to whole generations: making them lose their 20s, 30s and even worse their childhood (!)
when will we take this life wrecking disease serious?
#LongCovid
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Today is
@dutchlauren
’s birthday.
Her mom sent a video. Together with some family and friends she was at her grave, eating cake: ‘We are celebrating Lauren’s life!’
I miss her, but also feel so proud of her today. She has done so much for the ME community and her legacy stays.
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En dit is waarom we moeten blijven testen mensen.
Mijn broer zou vanavond komen, heeft geen klachten etc, maar test als hij komt vanwege mijn gezondheid (
#LongCovid
) en nu is ie positief.
Wat een rotzooi 😞
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I was 22 when I got
#LongCovid
and I am now 25. I don’t know what my future will look like. Please stay safe. Protect yourself and keep others safe. Our health is really not something we should gamble with.
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Now that I am inside again and typing this, I am bawling my eyes out. I miss life so much. How is it possible that everything that makes you feel alive, the things that are the oxygen for your soul, can make your body so ill?
#LongCovid
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‘Verlichting van symptomen is geen genezing, dus hebben patiënten er niks aan.’ zegt gezondheidseconoom Wim Groot nu op
@NPORadio1
Deze zin is heel veelzeggend over hoe we naar ziekte kijken..
Zolang genezing niet mogelijk is, is symptoombestrijding onwijs waardevol.
#LongCovid
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Lauren wrote a blog about everything to do with her ME, euthanasia, etc. She documented a lot and really wanted to leave something for the community, sharing what she wanted people to think about, learn, etc 💛
#ReMEmberLauren
#DagLieveLauren
#MECFS
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Wasn’t expecting this post to get so many comments. I don’t have the energy to soon respond and read them all. I’m on the more severe side so most things will be too much for me but pls know that I really really appreciate all this!! 💛💛Must be something in there that I can try!
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We stuurden
#LongCovid
patiënten massaal naar de ‘herstel’zorg - massaal gingen we achteruit in onze gezondheid.
Patiënten met
#MECVS
moesten toekijken en probeerden er alles aan te doen om
#LongCovid
patiënten te behoeden. 🧵
Artikel:
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Today marks 3 years of
#LongCovid
for me.
I jokingly made this fake LinkedIn post as managing this disease and everything that comes with it sometimes feels as if I have unwantedly enrolled in some kind of studies about post acute infectious diseases 🧵👇🏻
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Gaaf land hoor, waar oversterfte een financiële meevaller is…
“Het kabinet geeft daarnaast minder uit aan uitkeringen. Door de oversterfte is er bijvoorbeeld een meevaller van ruim 250 miljoen bij de AOW.”
Tot zover de waarde van mensenlevens.
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One of the cruelest things of this disease is that when you express emotions, pain, grief etc - you get even sicker. You become more miserable just because you expressed your feelings.
How do you cope when something like crying costs you some of your health?
#LongCovid
#MECFS
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Vandaag hebben mijn ouders het eerste deel van mijn kamer leeg gemaakt en opgehaald. En ik kon niet eens zelf meehelpen met het inpakken van mijn eigen spullen. Het was mijn eigen plekje. Vanaf daar zou ik mijn leven opbouwen. 💔
Klote
#LongCovid
, voor alles wat je afpakt. 😔
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Mijn rolstoelaanvraag bij de WMO is goedgekeurd.
Ik heb zojuist het verslag doorgelezen en keihard gehuild. Ik wilde er graag 2 stukjes uit delen want dit is hoe het WEL hoort te gaan.
Ik besef me onwijs goed dat ik enorm veel geluk heb dat dit zo op papier is gezet 1/
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Lotgenootje kreeg vandaag een elektrische rolstoel. 29 jaar is ze. Ex verpleegkundige. Onwijs hard geraakt door
#LongCovid
, kan bijna niks meer.
Ben geraakt door wat ze op instagram deelde, mag het hier delen met toestemming.
Dit is
#LongCovid
en het raakt ook jonge mensen.
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Beste Kamerleden,
Morgen weer debatteren over het covid beleid. Ik hoop dat jullie hierbij ook denken aan alle mensen met
#LongCovid
. (Geschat in NL nu 600k!) Hier onder daarom nogmaals een aantal van onze verhalen. Laat ons geen colleteral damage zijn! 🧵
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This! Lauren could get angry/sad (me as well) that the story of
#MECFS
only seemed to be interesting when someone was dying or had died. We talked about this multiples times. The attention should also go to the living who are suffering from this disease every single day.
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Naar het ziekenhuis met een zware vorm van
#LongCovid
In deze korte video hebben we geprobeerd om mijn bezoek aan het ziekenhuis van maandag vast te leggen om zo te kunnen laten zien hoe passende zorg eruit kan zien en om hopelijk ook wat bewustzijn te creëren.
🧵👇🏻
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At a Dutch symposium on
#LongCovid
that is currently happening an endowed professor of CBT stood up from the audience and distanced herself from CBT as a curative treatment. The whole room clapped.
👏🏻
6/ yes! Er stond een bijzonder hoogleraar CGT op uit de zaal. Ze distantieert zich van CGT als curatieve behandeling. Hele zaal klapte 😃. Terwijl er weinig patiënten zijn (en mister Knoop himself zo nog z’n praatje moet geven ;)
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Rioolwaarden waren nog nooit zo hoog. De kaart is zwart.
Stay safe.
Ben je besmet? Doe het rustig aan, ziek goed uit.
Ik zou willen dat dit voorlichting was vanuit onze overheid, maar die is ver te zoeken.
Iedereen kan
#LongCovid
ontwikkelen. Dus houdt rekening met elkaar.
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Lotgenoot deelt dit bericht. Weer een specialist die weigert iemand te zien vanwege
#LongCovid
. En dit gebeurt veel.
Dit staat haaks op
@ministerVWS
die blijft beweren dat Long Covid patiënten gewoon terecht kunnen in de zorg.
(gedeeld met toestemming)
1/2
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Unhappy to announce that I will soon have completed 3 years of my unwanted post infectious diseases studies. I will be starting my 4th year in January.
#LongCovid
Anyone else ever tired or overwhelmed by the feeling of having to learn all about very specific medical and research stuff bc you short of feel like you have to?
#LongCovid
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I can’t get over this photo from friday and the way my dog is keeping an eye on me as they place me in the van to go to the hospital.
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My shoes.
I have not worn shoes for so long. I have my indoor slippers and socks that I wear. But otherwise no shoes. Not using them for what you use them for
I wore these last in March, very briefly when I had my wheelchair fitting, to measure my feet with shoes on.
/
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230
I don’t want to cry on the internet, but to keep it real and show the contrast of the bright picture and how it feels to witness it shortly to then turn back to the ‘lifeless cave’ where I have to actively block out the sun and where I am hit with a wave of heartache and grief.
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CPC mouthwash and nasal rinse.
This might sound excessive to a lot of people. But for me there was a lot at stake here: the risk of worsening and losing even more quality of life, with already little left.
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I lay on the grass and looked up to the sky.
My eyes are burning now, my head feels concussed and my body feels like a magnet pulling me to the ground, but it was magical. I felt the wind and the sunflowers in our garden were blooming. -
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This picture from the
#LiegendDemo
#BielefeldTag
breaks my heart 💔
Two boys whose childhood/teenage years were wrecked by this horrific illness.
#MECFS
Heute ist
#BielefeldTag
! 🌆
Wir beginnen mit einer Bilderreihe von der Liegendemo am 11. Mai 2024 auf dem Jahnplatz in Bielefeld. Diese Bilder zeigen den Zusammenhalt und die Stärke der ME/CFS-Community. Lasst uns gemeinsam für Versorgung, Forschung und Aufklärung kämpfen! ⬇️
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Make-up. I used to looooove make-up. It’s catching dust now.
I remember a moment last June were I decided to put it on since long and get ready for the day, but only putting it on cost me so much that I was done for the day. I was so frustrated, I cried it all off.
/
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Your brain really adapts quickly to your world becoming small. Things becoming normal.
Similarly it also makes you see it differently than what it is sometimes, in a way to cope, to make it less heavy I think.
I know this is me, but it also doesn’t feel like this is me.
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223
I still think I am not that severely affected by
#LongCovid
, yet the reality is that I lay here everyday. I can do some stuff: but mostly only on my phone & sometimes on my laptop and I have to lay flat.
The last time I left the house was in July, before that it was December.
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Same goes for clothes.
Of course I still wear clothes. But I can’t really wear outfits anymore. My clothes now need to be comfortable & practical. Nothing that is too much stimulus.
I miss putting an outfit together. I loved jackets. I have ‘new’ ones that I haven’t worn yet.
/
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11
222
Anyone else ever tired or overwhelmed by the feeling of having to learn all about very specific medical and research stuff bc you short of feel like you have to?
#LongCovid
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Slaap zacht lieve Zoraya. 🌹
Vreselijk hoeveel nare reacties ze gekregen heeft in de laatste maanden. Wat ze deelde en hoe open ze was, was zo waardevol. De reacties lieten zien hoe hard het nodig is.
Haar warmte, begrip en steun toen Lauren overleed zal ik nooit vergeten.
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Vandaag 2 jaar ziek.
Terugkijken vind ik moeilijk. Ik ben flink achteruit gegaan. Van niet meer goed tegen drukte kunnen, naar niet meer kunnen wandelen, schilderen, naar nu bijna compleet bedlegerig. Steeds weer een extra stukje verlies, nog minder vanzelfsprekend.
#LongCovid
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214
Is there are guide or something on how to cope with losing your 20s to a disease that is disabling millions & is still doing so everyday but that governments and most people are actively ignoring, so you’re constantly screaming into a void? Asking for a friend.
#LongCovid
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OPROEP BOOS mailen:
#LongCovid
,
#pwME
#MECVS
#POTS
,
Hoe er al jaren met post infectieuze ziektes zoals bv ME wordt omgegaan is niet okay. Met Long Covid lijkt de geschiedenis zich te herhalen. Wij laten niet nog meer mensen in de steek: dit leed moet NU stoppen.
#ZiekBOOS
🧵1/10
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You can’t see it well, but it’s a life jacket that I bought for my dog. I wanted to go supping with her.
It hurts so so much that I can’t do the things I want to do with her anymore, spend time together & making memories.
Meanwhile times flies by. She’s 3 already.
/
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217
Does anyone else get completely wired and almost angry when they have to make a choice? I’m crashy right now and I just can’t make choices. Simple choices. My brain can’t do it. It’s too much. They burn in my brain.
#LongCovid
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Not able to watch
#UniteToFight
, am not well enough.
Hope I will be able to watch back some parts afterwards.
What are/were your favourites talks? Please share! (:
I am too fogged to get a good overview.
#LongCovid
#MECFS
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Ik ben weer helemaal klaar met de bureaucratie.
#LongCovid
1. Liggend vervoer voor ziekenhuis: afgewezen. Ze vinden dat ik prima met rolstoelvervoer kan. Dat ‘tripje’ naar het ziekenhuis is omdat ik al 2 jaar niet op controle kan komen voor iets waarvoor ik elk half jaar -
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I used to use this backpack everyday, for years.
Just in a way you use a bag haha: to take things with you.
For this one I don’t remember the last time I used it.
/
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How do you guys get rid of frustration or any build up emotion?
Internally I crave to be really active: to go running, fast and long, to go boxing, to idk listen to very loud music, talk about it, etc
Physically I’m unable to do any of this. How do you unload?
#LongCovid
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My mobility scooter. Bought it last summer. Had a few very lovely trips with it but unfortunately I got too ill to use it. So now it’s also catching dust in the garage.
/
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Now this is what I call a great present!
@FvRhijn
sent me a mug with the ‘Graded exercise should not be recommended for patients with post exertional malaise’ article on it.
@AnilvanderZee
and I were kindly put in the acknowledgments as we read and commented on an early draft.
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Really awful how there is suddenly a wave of really despicable reactions to Lauren's latest tweet and also comments saying that all the people who offered her support would be 'celebrating' it.
We still have a long way to go. 💔
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Onwijs onder de indruk van
@JasonErvD
die op eigen initiatief in gesprek ging met 50 jongeren en een rapport schreef, omdat hij weet hoe hard het nodig is dat er iets gebeurt. Dan ben je een groots.
Wel te bizar voor woorden dat dit nodig is om dingen aan de kaak te stellen.
'De inspectie heeft onlangs informatie ontvangen over de ZIKOS-afdelingen van een ervaringsdeskundige. (...) De informatie gaf de inspectie aanleiding voor een onaangekondigd toezichtsbezoek aan de ZIKOS-afdelingen van de twee jeugdhulpaanbieders.'
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Deze tweet is een petitie om als doel voor
#SeriousRequest
2023 Long Covid & andere postinfectieuze aandoeningen te kiezen.
@3FM
Waarom?
Impact van de ziekte is enorm.
Overheid laat patiënten in de steek. Onderzoek komt niet van de grond: gebrek financiering/
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In these moving boxes are apparently things I don’t use anymore because they still haven’t been unpacked. I had to move back in with my parents in December. I can’t unpack my boxes & my parents also don’t have the energy so the boxes are still in the hallway & the stuff unused.
/
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198
Ben vandaag in het ziekenhuis gaan liggen in de wachtkamer en ik ben best een beetje trots op mezelf dat ik dat gedaan heb. Vond het zo ongemakkelijk, en krijg sws al veel vervelende blikken van mensen maar hield het zittend zo slecht uit en dacht: ik moet liggen. Hielp echt.
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Heel boos dat vriendin met ernstige
#LongCovid
nu weer covid heeft. De enige die ze ziet is thuiszorg. Ze komt letterlijk niet buiten - te ziek. Thuiszorg moet ze zelf voorzien van ffp2 & ze gaan er nalatig mee om.
Zover gaat ‘kwetsbaren moeten zichzelf beschermen’. Het kan niet.
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Als reactie op het stuk in het BD wat suggereert dat elke covid infectie je immuunsysteem ‘in vorm houdt’ deel ik graag even dit stukje waar onderzoeker David Putrino vertelt dat hij en zijn collega’s van Yale en Stanford precies het tegenovergestelde zien in onderzoek.
Een nieuwe coronavariant rukt op: moet ik me zorgen maken?
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My 2023 wrapped:
• Days spent in bed: 365
• Times I left the house: 1 - to the hospital with horizontal transport
• People I've seen who aren't healthcare related or a carer: about 8 I think
• Whole days with curtains fully open: 0
#LongCovid
My 2023 wrapped:
Days spent in bed: 365
Days in unbearable physical suffering: 365
Times I left the house: 2 (doctor and dentist)
People I've seen who aren't a doctor or a carer: 1
Nights with insomnia: 365
#severeME
#severePOTS
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It was bright. A colourful world, where things are alive, where you can really feel the ‘living’.
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Yet I still often feel like I am still able to do a lot. But it’s a lot in comparison to the level of illness I also now some suffer with. It’s very little in comparison to a healthy person. I often forget that. What a healthy human can do.
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