Just saw my GP again after ~9 months. Told him I was better, back at work, but very much struggling. He beamed at me "See, that's what happens when you stop being obsessed with
#LongCovid
, get out of bed & focus on your life". And I don't know... I think I need a new GP?
My parents & I clashed on the phone yesterday, because I was crying from pain & exhaustion & my dad said maybe I should start believing doctors who tell me this is psychosomatic. I was hurt & hung up. They never called again, not even a tiny message. I feel terribly alone now 🥺
1297 days I've lived with
#LongCovid
. And despite masking, completely giving up social life & being incredibly careful, here's round 2. To say that I'm scared is an understatement. I'm freaking terrified. How much of my life will I lose this time?
#CovidIsNotOver
OMG finally! I got a diagnosis. A nice neurologist just told me that
#MECFS
,
#LongCovid
+
#POTS
are bullshit. I'm just too afraid to stand up. As in... be on my feet. So my body reacts with panic attacks everytime I manage to get out of bed. How silly of me. Consider me cured.
#Covid
day 3: Hell started. Shortness of breath is back, I'm wheezing, fingers & lips are blue. I have trouble speaking. Palpitations are mad & my whole body is vibrating internally. Afraid to call doctor, bcs I will be laughed at. Afraid to call parents, bcs they'll just worry😔
Was told today that I will lose my job. And with it not only my income, but also my dream and my passion to work for a cause that truly matters to me.
#LongCovid
has already taken the rest. I don't know who I am anymore 💔
Dear doctors who see a HR above 120 & automatically assume a panic attack - have you ever seen someone in genuine panic? Because sure as hell that person wouldn't be able to give you a ted talk on mitochondrial dysfunction while the body's freaking out. Sincerely, a very chill me
I treated myself to a massage today. And HALLELUJA. The therapist found the reason for my
#LongCovid
/
#MECFS
: I'm wearing too much black! No wonder my "energy can't flow". I changed into bright pink right away & can confirm that after 3,5 years, I am 100% cured 🙃
When my parents die, this'll also be the end of me (if
#LongCovid
doesn't get me first). I wouldn't know how to exist in a world without their help. No partner, no kids, no friends, no career, nothing to look forward to. This illness took it all.
#MECFS
#NotRecovered
My left side is completely numb. Can't use my arm or leg at all, smile is lopsided & face tingling. Called emergency services & made the mistake of mentioning
#LongCovid
. They won't come for an assessment & I can't get to an A&E 😫 I'm sure it's nothing, but it still feels awful.
Do you sometimes also just burst out in tears, so desperately wanting your old life back it feels like it's tearing you apart? Every once in a while this unbelievable grief & despair washes over me that I otherwise only know from a loved one dying 🥺
#LongCovid
#MECFS
Anyone else getting overwhelmed when seeing a new doctor. I don't just mean "Will they believe in
#LongCovid
?", but also... how do you squeeze a ton of symptoms, changes over the years, the trigger, your health before, your concerns & some science into a 15 minute consultation?!
Can the media & "experts" please stop calling
#pacing
a viable way to live with/cure
#LongCovid
? It makes it sounds like a fad new lifestyle. When will they report it means dark & soundless rooms, the choice between a call & a shower or not leaving the house for many of us?!
For those saying
#LongCovid
is taken care of:
#LongCovid
clinics are a fairytale made up by governments to make them look good. They will not treat you. They will not heal you. They will not explain what you have. With a bit of luck there's empathy, but mostly you're on your own.
Ich bin an
#Covid
erkrankt, als das Virus kaum bekannt war. Ich hatte keine Angst, die Medien berichteten kaum & ich war 30, sorglos & kerngesund. Nun sagen Experten, dass Angst & Sorge maßgeblich zur Entstehung von
#LongCovid
beitragen? Wie passt das zusammen?
#LongCovidKongress
Guess which
#LongCovid
sufferer waited paitently for a neurology appointment for 7 months... And now guess what just got cancelled, because it was deemed "not essential" while our hospitals are overrun by
#Omicron
. Next available appointment... August 2022 F*** me 😖
Hey ladies, listen up! My new GP found the ultimate
#LongCovid
treatment. Step 1: Walk through a city. Step 2: Smile at men. Big smile! Step 3: Take said men home & do what biology made you for. Repeat. Not sure if this works for gents & in villages, sorry 🤷🏻♀️
#MedTwitter
#MECFS
@EtanaHechtDC
@Craig_A_Spencer
Early days, there was none. You gasped, you struggled, you turned blue in the face, you passed out. If you woke up again, you repeated the process. Until you either came out of the other end scarred or a hospital had a place for you.
On this day 3 years ago, I was about to start my yoga routine. Suddenly feeling dizzy, my mat remained empty. My lunch was left untouched, as I started vomiting, lips turning blue. 1095 long & lonely days later, my once vibrant life remains on hold, a fading memory.
#LongCovid
@thechronicchloe
Well, my doctor would reply that being a single woman in my late 20s, I subconsciously longed for attention & care & thus accidentally created an illness I can't get out of in order to get from doctors & society what I can't get from a man 🤮
Why isn't it common sense to assume that if
#COVID19
f***** you over once, it won't do it again? Why are
#LongCovid
patients excluded from vulnerable & risk groups? Why is nobody protecting us? How much more "adverse" can an outcome be, unless you're, well, dead?!
5 months ago, I went for my first "hike" since
#LongCovid
. Everything nice & flat, 5km, many breaks. It was brilliant. I thought I had finally turned a corner. Then I started working again & barely have the strength to take out the trash anymore. You can't win with this thing 🥺
@ellbail
Bizarrely enough she did the lying/standing test. She saw my heart rate shoot up. She checked it twice. So not only doesn't she know about POTS, but also panic attacks. Has anyone told people with real anxiety to maybe just... sit down? Seems to solve the problem in seconds 🙃
I ran out of toilet paper. Nobody to help me out. So I slowly stumbled down the road, no more than 100 metres to the shop & back. Now I'm shaking from exhaustion & every muscle hurts. On days like this, I just want to cry over what my life has become with
#LongCovid
🥺
Saw my GP yesterday, who, after two years of following my
#LongCovid
odyssee, suddenly decided that chronic illness might not be a thing after all & I should see a psychologist & work out more. Great. On a positive note, I feel surprisingly good - no
#PEM
so far. That's new! 💪🏻
@Robert83563198
@c_drosten
ist für mich die vllt größte Enttäuschung der Pandemie. Als Virologe sollte er die verheerenden Folgen von Viren kennen. Diese unreflektierte Aussage, ohne Empathie gegenüber Toten, Kranken &
#LongCovid
Patienten, die als Kollateralschaden bleiben, macht mich sprachlos
Woke up to my entire left side feeling numb. Can't lift stuff. Don't feel it when I smile. Leg just giving out, hitting the floor too early or too late. Splitting headache. I suppose most people would freak out. I'm sitting here working. What has my life become?!
#LongCovid
Told mum about the German petition for
#MECFS
. She was insecure about "the online stuff". Told her there's a paper version. 4 hours later she came back with not just her, but 11 signatures from friends. It's not much, but it means the world! Be like mum:
#NotRecovered
for 913 days. I could've finished my PhD, made life better for Europeans in the job I had, supported dozens of working class kids as I did before & built a life & career for myself. Instead, my early 30s were irrevocably stolen from me by
#LongCovid
.
When I had
#Covid
in 2020, my biggest fear was dying. I couldn't breathe, passed out... My biggest fear with this infection is surviving & severe
#LongCovid
returning. I wish there was a way to predict the outcome. I can't do another round of that. There's worse things than death
Dear
#NEISvoid
. How tf do
#chronicallyill
people figure out whether it's a flare, a new symptom or one is actually in mortal danger? When to go to a doctor/hospital? This
#MECFS
/
#POTS
rookie here is struggling and scared 🥺
Had a good cry today. A year ago, I thought I'd never get out of bed again. Today, I climbed a hill in a foreign country. Now I'm resting in bed with multiple hot water bottles, but for a moment, the spark of old me burned bright & full of hope 💙💙💙
#LongCovid
#MECFS
@resiapretorius
@dbkell
With
#LongCovid
, my body is covered in bruises. Went to see a doctor, triumphing - for sure bruises couldn't be psychosomatic!? His 1st question was about self-harming behaviour. His 2nd whether I was into rough stuff in bed. Zero interest in clotting, zero investigation...
@DB_Bahn
@gedanken_lost
Schätze Humor ja normalerweise sehr, aber echt schade, dass
@DB_Bahn
die Gesundheit & Befindlichkeit immunsupprimierter & kranker Menschen so mit Füßen tritt. Aber Empathie war ja noch nie eure Stärke...
How is it possible that I can work a full-time job without crashing majorly, but as soon as I attempt a 10min yoga session, my body shuts down straight away & I feel like hell for days?!? I don't get it 🤦♀️
#LongCovid
#MECFS
*TW*
Today is one if those days when I wish Covid had gotten the better of me in March 20. Too sick to move, too agitated to stay still. Pain levels through the roof & feeling like somebody's beating my chest in. Alone in the flat, nobody to contact. I'm so done with
#LongCovid
!
I spent most of 2021 in bed. Showers triggered PEM. Last week, I was forced to venture outside three times. Took extra care of breathing properly, taking breaks, monitoring HR - & I did not crash! My head, neck & back hurt & I'm tired af, but no PEM. What is this sorcery?! 🙏💪🏻🥰
I can't stand long due to
#POTS
&
#MECFS
/
#LongCovid
. But I'm not eligible for a disability badge. Really struggling on public transport when there's no seat. Would I be a fraud if I left the house with crutches/a walking stick even if I *technically* don't need them?
#NEISvoid
It's my third birthday with
#LongCovid
tomorrow. A third of my 30s gone & wasted. Three years with nothing to celebrate & nobody to congratulate. I can't help but wonder how many of these birthdays I'm yet to have. I just wish I could scratch 29 December off the calendar 😔
I have now officially gained 50lbs since getting
#LongCovid
. And while I know it's not entirely my fault, I feel like a failure. Not just because I feel uncomfortable in my own body, but also because doctors will now start blaming issues solely on my weight (again) 🥺🥺🥺
Habe die Doku mit meinen Eltern geschaut, die meine Diagnose
#MECFS
nicht wahrhaben wollen und meckern, wenn ich Ruhe brauche. Nach 2 Minuten war meine Mama zutiefst erschüttert über die "Menschen wie mich". Fühle mich erstmals ein bisschen verstanden.
@leimsen
@DB_Presse
Jup, im ICE von Brüssel genauso. Bis zur Grenze keine Masken, dann die Durchsage, dass "dieses Stück Stoff in Deutschland LEIDER immer noch vorgeschrieben" sei. Überprüft wurde nicht. Aber
@DB_Bahn
sind die Vulnerablen eh egal,wenn man sich allein die Barrierefreiheit anschaut...
@MLS_Dave
@BeingCharisBlog
I mean... that's fantastic advice and as a
#LongCovid
sufferer from the 1st wave, I agree, but how are you going to do this in practise unless you cut ALL physical ties to other humans & earn/have enough money to be able to shelter at home 24/7?
When will people realise that a "strong immune system" isn't desirable? Mine is strong. Like... the Thor of immune systems. Once set in motion, the lightning storm is never ending. You want an an appropriate immune response. Too much of a good thing can kill you too!
#SARSCoV2
@david__x23
At work. 2 co-workers & my boss tested +, too, so I'm certain I got it from one of them. I always mask around people, shops, public transport etc., but over the summer I sometimes left the mask off when I was alone in my office. Must've walked through some Covid cloud there...
@katemeredithp
Since it was a Friday night, they suspected I had taken drugs (high HR, wobbly legs, slurred speech from
#LongCovid
) & put me next to some intoxicated men who were shouting & vomiting & peeing in their beds. It was absolutely horrifying - I've been avoiding the ER ever since 😔
@Alenyikov
That's precisely what always baffles me. I do of course believe that psychosomatic disorders exist, but hundreds of thousands of people developing all the SAME psychosomatic illness after the SAME viral infection... I'm always in awe that doctors seriously consider this...
@TheCPDiary
At work. At least 2 of my co-workers & my boss tested positive, too. I normally mask when there's many people in the room, but didn't when I was alone in my office or when walking to the toilet, kitchen etc. Guess that was a mistake & I walked through some Covid-cloud 😮💨
"Wir können nicht noch Jahre forschen & die kranken Patienten zu Hause liegen lassen" Danke
@C_Scheibenbogen
! Ich hoffe,
@Karl_Lauterbach
schreibt mit. Wir brauchen Forschung UND experimentelle Behandlung auf Kassenkosten.
#LongCovid
ist kein Problem von morgen!
#LongCovidKongress
@EtanaHechtDC
@Craig_A_Spencer
As someone who got sick in March 2020, I can tell you that as a 20-something, otherwise fit & healthy, it was almost impossible to get hold of a doctor. Heroic or not. I was lucky. I lived to tell my story. It is one of pain, confusion, limited resources & knowledge. Not blame.
@TiloJung
Mag
#Reitschuster
ja auch nicht, aber hier hat eindeutig Herr Kautz Mist gebaut. Tatsächlich scheint bei Delta die Viruslast gleich hoch zu sein: Und
#LongCovid
gibt's leider auch trotz Impfung.
@MichaelAnneRos1
Thank you, you're all amazing and so incredibly kind 💙 It's a very confusing experience, because my dad has a chronic illness himself - he should know, we even share symptoms! I don't understand why he flipped yesterday 😩
@fundraisingkat
Even if that *was* the case, I assure you the
#LongCovid
patients are happy to make space for you. I'll never forget how the
#MECFS
community reached out from the very beginning, anticipating this whole mess & giving advice. Many would be much, MUCH worse right now without you.
Bullshit bingo of the day:
✔️ Anxiety
✔️ Too young
✔️ Too heavy
✔️ Deconditioning
✔️ Laziness
✔️ Fear of exercise
✔️ Being yelled at for not trying
✔️ Being a woman
✔️ Googling too much
✔️ Post Covid for max 6 months
✔️ "I was tired too"
❌️
#LongCovid
❌️
#MECFS
❌️
#PEM
@loy_daniel_de
Es tut am meisten weh, dass ich bis vor 752 Tagen so vieles war - Doktorandin, Wissenschaftlerin, Referentin, Journalistin, Stipendiatin, Reisende, Fußballerin, Freundin... & plötzlich im besten Fall nur noch Kranke, im schlimmsten fauler Hypochonder. Ein ganzes Leben einfach weg
@thechronicchloe
My personal favourite is the well-known disease "fear of standing". I.e. everytime I *think* of standing up, walking around or, God forbid, excercise, I get so scared that I have a panic attack with a racing heart, dizziness etc. Yes. A doctor said that. No. It's really
#POTS
.
@thechronicchloe
That about sums up my reaction at the time 😶 Not sure what sick fantasy that male doctor in his early 30s had, but it's in my top 3 of bizarre things I got diagnosed with instead of
#MECFS
.
@Abster_1983
They're 98-99%. The same happened in 2020 - I don't fully understand why, but overall oxygen levels are fine, it might be capillary issues that are causing the blue tinge & numbness?
I'm in a terrible crash. My parents offered to drive across borders to help. I'm 32yo & never wished for my mum more than now. Turning them down, because I'm scared they'll catch
#Omicron
was so f*** hard. And others are skiing & partying. Not fair!
#LongCovid
#chronicillness
@genjibear
Yeah, the only reason I stuck with him for so long was that, while he never truly believed or understood me, he was quite cooperative to refer me to specialists, prescribe PT, write me off work... I heard there's plenty of other GPs who won't even do that 😵💫
I don't think I can sit through another work meeting pretending to be okay, hiding pain & exhaustion behind a cheery smile & insisting that my teary red eyes are from hayfever. I'm so done with this
#LongCovid
shit!
@BMBF_Bund
Das ist ein Witz, oder? Viele von uns haben nicht mal mehr Kraft zu duschen!
@Karl_Lauterbach
Stoppen Sie diesen Wahnsinn! Ein großer Teil der
#LongCovid
Patienten erfüllt die
#MECFS
Kriterien. Belastung jeglicher Art kann zu Verschlechterung bis hin zur Bettlägerigkeit führen!
@clarejdaly
My 3 year anniversary is still a bit away, but next week marks 1000 days of
#LongCovid
. I don't even remember the feeling of being healthy anymore... And while I seem to have improved a bit by chance, it makes me MAD that not much's changed for
#LongCovid
patients since then.
@DaysShsin
I really thought after two years they would've understood. Especially because my dad has a chronic illness too. I think that's why it hurts so much. He at least should've known better 🥺Thanks for reaching out 💙
@katemeredithp
I'm so sorry! I understand the understaffing, but it's terrible! Went to the ER last year & was only seen after I vomited on their feet after 5 hours. Then was left unattended in a corridor bed for another 5 & my request for water denied with "we're saving lives,you have to wait"
Why is everybody acting like they caught the flu 5x/year pre-
#Covid
? I didn't know what "It's just the flu" meant, because due to some apparent superpowers, I NEVER had the flu in 30 years. But I also never met anyone who had to call in sick multiple times a year for it 😵💫
@jason_isaia
Well, clearly something MANLY. Idk, what's the equivalent to batting your eyelashes & have babies? Go hunting? Split wood? Eat a raw steak? Wrestle your neighbour? 🤷🏻♀️🙃
@DeneneCavanagh
I'm definitely looking out for signs of it getting worse, promise! I've had these episodes repeatedly since getting Covid & imaging was always clear. Hence not overly worried, but still a terrible feeling 😔
@julia_with_me
I feel you! Mir wurde gesagt, dass ich mich (als Single 30+) insgeheim nach einem Mann sehne und so jetzt mit
#LongCovid
die Aufmerksamkeit bekomme, die mir fehlt 🤦🏻♀️ Hoffe, du musst da nicht mehr hin? Das geht sowas von gar nicht!
Most people look forward to leaving work. It's when LIFE begins. I dread it. I don't want to go home. Because I know I'll go straight to bed. Curtains closed. There's no music, no laughter waiting for me. The price I pay for working with
#LongCovid
is having to bury myself alive.
@DerekCBeland
Oh, I am calm. Had 3,5 years of
#LongCovid
practice. Which is also why I currently feel that going to the ER would cause more harm than good - doctors there don't believe me anyway. Unfortunately, I'm also entirely alone, so I need to be careful with my energy budget 😮💨
@C_Mellenthin
@1goodtern
100% agree. He did mention once that he saw a lot more patients presenting with "anxiety" during the pandemic & while there might be a certain %, I'm convinced these are probably just
#LongCovid
patients in disguise 🧐
Travelled ages to a meeting I had really looked forward to. Learned on arrival that it was changed to an indoor location (despite a terrasse available & 26°C). Stood there for minutes, watching everyone having fun inside. Am now crying on the bus home. I hate this virus 😭
@ShaneyWright
Yeah, Belgium's investing 400.000€ to see how food & exercise can help
#LongCovid
patients (since they STILL classify it as a psychosomatic illness). It's infuriating to think how many things could be achieved with that money 🤬
THIS! While my bout of
#Covid
wasn't exactly a walk in the park, the truly fun stuff only set in weeks/months afterwards. Stabbing chest pain, neurological disorders, headaches, burning skin, bone-crushing fatigue... Then loss of job, friends, independence.
#LongCovid
takes it all
@ahandvanish
Anecdotal of course, but: My brain had this weird quirk where I could soak up two different things at once - watch TV, read a book or read a book, listen to an audiobook... & recalling in detail both plots. That's gone since
#LongCovid
. Can barely recall details of 1 event now
Saw a functional medicine doctor who has
#LongCovid
herself. Almost cried, because it felt so good to be believed + listened to for 2(!) hours. Downside is that she suggests highly experimental treatments (EWOT, ozone, vagus nerve stim) that are waaay out of my monetary league 😔
@GrGuenter
But take it from someone who knows -
#LongCovid
can get a lot worse. I fought my way back from bed-bound to working over 3,5 years with lots of setbacks & desperation. I don't think I can do that again.
@leahajk
THIS! I'm particularly flabbergasted when people with
#MECFS
or
#LongCovid
choose not to (not: those who can't!) & opt to expose themselves to the very thing that ruined their life in the first place. Making it worse for everyone else in the process 😵💫
@D_Bone
The biggest difference definitely the whole
#MECFS
community who reached out, warned & helped before whe even knew what hit us in early 2020. Not falling victim to gaslighting & avoid shit like
#PEM
is definitely thanks to them.
Als Betroffene kritisiere ich häufig
@Karl_Lauterbach
s
#LongCovid
/
#MECFS
Politik. Aber das, was sich das
@ZDF
da bei Markus
#Lanz
erlaubt hat, ist dem öffentlich-rechtlichen Rundfunk, ja dem Journalismus allgemein, komplett unwürdig. 4 gegen 1 & 0 Fakten. Schämen Sie sich!
@Inge_V
Variations of it. Had a heart echo earlier & the tech was also like "you're very nervous, aren't you", meaning my 140 HR. I had just walked up stairs & am in f**** pain. Plus POTS. Overall I don't know what they think is going on, because I still haven't seen a doctor yet 😒
@Karl_Lauterbach
@SZ
Langsam wird es verrückt. Sie tun so, als wäre
#LongCovid
etwas, das meilenweit in der Zukunft liegt. Hunderttausende leiden seit teilweise über 2 Jahren! Vielleicht sollten Sie statt Warnungen zu tweeten lieber an einem konkreten Plan arbeiten, wie uns geholfen werden kann!
@ann_mcnitt
At least she's not medically treating people. She was otherwise really lovely & addressed my back/hip pain quite well. No hard feelings, I'd still go back 😉
@EmilyCBrossard
@Dan_Wyke
I mean, I'm not against pacing, it works to a degree. But the wording around it that makes it sound like an easy-peasy activity that comprises the occasional nap & sitting down every once in a while. Nobody ever mentions the real difficulties & the unbearable sacrifice behind it.
@longcovidpod
@j_b_kennedy
Especially since everything seems to count as an underlying condition these days if it serves the narrative, even when it has zero impact on overall health & happiness, life expectancy etc. I've heard lactose intolerance being named as one by a
#covidiot
. 🤦♀️
@amymitchellart
@elle_carnitine
The funny thing is.. I'm basically already treating it thanks to PEM - alone, in a dark room, no stimuli, but lots of junk food? Just lacking the daily massage - any volunteers? 😅
@ashleysamaha
Fully second this. I didn't develop pneumonia until week 4/5. First hospitalised at 3 months with a dangerously high heart rate & multiple syncopes. Case was considered "mild". Hospitalised again with stroke-like symptoms after 6 months. Still suffering 22 months later...
Colleagues:
#Covid
is just a cold.
Also colleagues: I don't need to test. I just have classic cold symptoms, it's not
#Covid
.
Make it make sense 🤦🏻♀️
#CovidIsntOver
#LongCovid
Just had my *hopefully* new therapist tell me that I have a medical problem & she cannot do anything for me in that regard. It's so bizarre that this is making me weirdly happy! She sees
#LongCovid
as what it is - a neuroimmune disorder that can't be "cured" by talking about it.
@Dt_Aerzteblatt
Lesen Ihre Mitarbeiter die Studien, bevor sie darüber schreiben?
- keine Kontrollgruppe
- 64 TN, davon nahmen 13 an keiner Sitzung & 22 nicht am post-intervention assessment teil, nur 37 an mehr als 6 Sitzungen
- andere Rehamaßnahmen parallel, inkl. Physio, Meditation etc.
A co-worker's kid is struggling two month after their Covid infection. The signs of
#LongCovidKids
are all there, they can't even do full school days anymore. Yet, their parents believe it's "just to do with a growth spurt" & tell them to push through. When will people listen?!