Dave. @UnwantedGuest3 Twitter profile

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Dave.

@UnwantedGuest3

2 years

The 12 different bots and trolls of #longcovid and #covid Twitter: A thread 🧵

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Last Seen Profiles

@TallerThanSoul

@4MJfam

@SgtGRSanderson

@polypawns

@Ninpototo

@devyetanu_

@abujhadalmelahi

@p3ngssss

@noriat

@momlife_comics

@ArravenINC

@mokkuoshka

@ha_vids6

@4DbjFNjOmL30624

@pippa_bailey

@stwmaniax

@BearwhaleOrds

@ABbitar1

@lxcqv

@K385999

@stw_pdg

@ShimanoSteve

@bokeplokalmalam

@MarSala___

@Zzzzzkof

@punichya

@lcfctomm

@degame_l2y

@AAbubakar76750

@DesyRsi4278249

@BinorRaja

@mokkuoshka

@meauxSC

@LaveeShala62807

@ruisballoon

@DamirSvrtan

Dave.

@UnwantedGuest3

2 years

Why I can’t just treat this “like a cold” and why I won’t “get a fucking grip” A thread 🧵

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@UnwantedGuest3

3 years

It’s been 600 days since I went down with a mild case of #covid . In this time I have experienced the most terrifying and relentless illness in #longcovid . Thankfully I do feel better these days but in some ways I’m a shadow of the man I used to be. Some highlights from 600 days:

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@UnwantedGuest3

3 years

I am in my forties (was) super fit and healthy, barely had time off work over a 25yrs+ career and only on the very rarest of occasions took meds. A “mild” covid infection has left me with horrendous #longcovid for nearly two years and turned who I was, completely upside down 1/5

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@UnwantedGuest3

2 years

This is why I now look at that thin red line, and my heart sinks. That red line represents yrs of loss, grief, trauma, pain and disability. Am I to go through all this again? I don’t know if I can. And just because it hasn’t happened to you yet doesn’t mean it won’t. END

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Dave.

@UnwantedGuest3

2 years

A year ago a friend of mine with #longcovid collapsed on a short walk and thought he was never going to make it home again. Today I watched him run the line for 60mins of his daughters football match. He came off at the end of the game, beaming from ear to ear. #longcovidrecovery

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Dave.

@UnwantedGuest3

3 years

Covid is rampant here at the moment and the kids headteacher has been asking everyone to test on a Sunday night / Monday morning. Last week this simple step caught 50 kids (all asymptomatic) who would have otherwise gone into school. That’s nearly a tenth of the school.

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Dave.

@UnwantedGuest3

2 years

And as for “get a grip” I say a big fuck you. I already have a tighter grip than you will ever understand. This is a grip that has got tighter and tighter, over 3 years, on the learning that Covid causes unimaginable pain, petrifying symptoms and life-limiting disability.

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Dave.

@UnwantedGuest3

3 years

I’m not telling you this for sympathy. That’s the last thing I want. I’m telling you because I don’t want you, and your family (because your sickness impacts your whole family), to go through this utter shitfest. So please - wear a mask, get vaccinated if you can, ventilate. 5/5

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Dave.

@UnwantedGuest3

3 years

30 cases discovered in my kids school yesterday through routine testing and immediately the HT has cancelled in-person assemblies, mandated indoor mask wearing, contact trace and test and closed PE changing rooms. Quick and decisive. This is what #covid leadership looks like.

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Dave.

@UnwantedGuest3

2 years

So this is why, when this second red line popped up on my LFT on Tuesday morning, I can’t just think of this as a cold. I don’t have that privilege. My eyes have been opened to the devastation that a virus can do to a previously healthy, super fit, relatively young body / mind.

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Dave.

@UnwantedGuest3

3 years

Please don’t go through this bollocks. You know what you need to do to not go through this bollocks. ENDS

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Dave.

@UnwantedGuest3

3 years

Hospitalisations and deaths (tragic that they are) are not the only outcomes. Trust me, #Longcovid is a living fucking nightmare. As well as laying ruin to my mental, emotional and physical health it has nearly bankrupted me. 3/5

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Dave.

@UnwantedGuest3

10 months

Two close friends / family members have died this week. I’m reeling. One died from a heart attack one month after getting married and the other from a brain aneurism while out running. Both super fit, both between 30 - 50yo.

Dame Sa 🐝 3.5%

@LongCovidHell

10 months

Lots of studies on Covid blood vessel damage. The British Heart Foundation links many in this article: “By triggering endothelial damage, Covid may cause abnormal blood clotting, leaky vessels & reduced blood flow, causing consequences from head to toe.”

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Dave.

@UnwantedGuest3

2 years

There was cognitive function collapse: Where there were names, places, words and faces before, there was now nothing. Big yawning black holes of nothing. No recall. No memory. No context. I cannot describe how utterly petrifying this was.

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Dave.

@UnwantedGuest3

3 years

I hate that I’ve lost the rich, vibrant life I once had. I hate being weak and vulnerable. I hate the loneliness that chronic illness brings. I hate being medicated on a daily basis and relying on all this shit to feel ever-so-slightly less worse 4/5

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Dave.

@UnwantedGuest3

2 years

After 28months of #longcovid I increasingly have occasional good days. Maybe a couple a fortnight. When they happen they are brilliant. Today is one. I did yoga this morning, cycled to and from work, played with the dog, made dinner and still feel fine. Having energy is AMAZING.

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Dave.

@UnwantedGuest3

2 years

Exactly 3yrs ago today I caught CV19 for the 1st time. Initially it was like a bad cold. It did put me in bed for a day or so but within a week I was back up and about again. So far so good. On narrative. However things didn’t feel right. I hadn’t quite reassembled properly.

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@UnwantedGuest3

3 years

This is not for sympathy. Most people I know with #longcovid don’t want sympathy. They want to get better. They want people to be informed. They want research. They want to be listened to. They don’t want other people to go through this bollocks.

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Dave.

@UnwantedGuest3

2 years

And there’s more. A whole lot more. There’s no space to write about the horrible impact this has on personal / professional relationships. The terrible financial impact that chronic illness has. The abuse I’ve received. The gaslighting from (some of) the medical community.

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Dave.

@UnwantedGuest3

10 months

My 3rd infection (presumably JN.1) which is tearing through my community at the mo is very different to infections 1 & 2 - no running nose, no fever. This feels more like long haul flight jet lag - headache, fatigue, dizziness, whiny ears. Like a different illness altogether.

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Dave.

@UnwantedGuest3

2 years

#longcovid is shit in the here and now but I grow increasingly concerned about future impact. What is the long term effect of a deregulated central nervous system? What is the consequence for future battles with pathogens and viruses from an immune system that’s gone berserk? 1/3

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Dave.

@UnwantedGuest3

2 years

Before I got #longcovid 2.5yrs ago, I used to go to Blaze, a HIIT session at the gym involving loud pumping music, low lighting, weights, cardio and punch bags, with big screen metrics for motivation. I LOVED it and would come out ripped, sweaty and happy, 3x a week 1/7

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Dave.

@UnwantedGuest3

2 years

There was a niggling irritation in my throat, a mild pain in my stomach, a tightness in my chest, a mild headache that wouldn’t go, whining tinnitus and an odd fatigue that would just come on unannounced. I didn’t think much to it. I’ll be fine in two weeks, right? Wrong.

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Dave.

@UnwantedGuest3

2 years

There was physical function collapse: every day I was in a concussed state. An upside-down with perpetual jet lag, altitude sickness and horrendous hangovers. Any form of movement made it exponentially worse. I was learning what #pwME #pwcfs have known for decades - PEM is hell.

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@UnwantedGuest3

3 years

Now going into hospital for my 5th MRI scan in 20mos. This is following hospitalisation over Xmas / New Year due to acute and agonising inflammation of organs. I’m in my 40s and falling apart following a mild infection in 2020. This is what “living with covid” looks like fuckers.

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Dave.

@UnwantedGuest3

2 years

Unfortunately over the subsequent weeks my health started to slowly deteriorate, like an old car battery being slowly discharged, my mitochondria being bled dry with no way to recharge. Niggles turned to issues turned to severe turned to critical.

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Dave.

@UnwantedGuest3

2 years

Connective tissue and muscle collapse: persistent and crushing chest / rib pain, agonising back and shoulder pain, rheumatic joint pain, crunching and crackling tissue in the neck. People living with chronic pain will tell you that life can be indescribably painful.

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Dave.

@UnwantedGuest3

1 year

I got sick with #longcovid over 3yrs ago. It’s been a dream of mine to go running with my dog. I’ve been building up slowly over the past year and this morning I did it. I managed 2K. I think she was as surprised and delighted as me, leaping about like a spring lamb round my feet

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Dave.

@UnwantedGuest3

2 years

Sleep centre collapse: I suffered insomnia. It was hard to sleep and to stay asleep. I would jolt awake as if injected with adrenaline, and then spend the rest of the night with skin crawling as if it was on fire. The sleep I did get was useless too. Unrefreshing, unquenching.

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Dave.

@UnwantedGuest3

3 years

#longcovid is a terrifying and lonely journey. Ive never felt so vulnerable in my life. I’ve sat on the end of my bed and cried more than I’ve cried in my life. Horrendous symptoms, a maiming, life limiting illness with no answers or cure. It’s a bastard dementor in virus form.

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Dave.

@UnwantedGuest3

2 years

Nervous and neurological system collapse: my fight or flight went haywire; adrenaline dumps at 3am, sudden onset panic during everyday conversations, histamine overloads, night sweats, day time chills, whining tinnitus. Oh my god, the whining fucking tinnitus…

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Dave.

@UnwantedGuest3

2 years

The subsequent months and years have been a living nightmare as bodily system after bodily system collapsed.

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Dave.

@UnwantedGuest3

3 years

BUT. And its a big but. I am getting better. It’s slow but I am getting better. There are silver linings. I know my body better. I’ve slowed my life down. I’m grateful for everything. I’ve met many warriors and survivors and inspiring people. Here and IRL. And I’m getting better.

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Dave.

@UnwantedGuest3

3 years

I’ve had 6mos out of work, can now barely do simple yoga moves without days of consequences and physical repercussions, live in constant pain / malaise and spend a fortune on meds. This is just ONE of the meds draws I’ve got. And note these manage - NOT relieve - symptoms. 2/5

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Dave.

@UnwantedGuest3

2 years

Digestive system collapse: Covid destroyed my microbiome. There are no words to describe the misery of years of consistent stomach cramps, stomach pain, acid reflux and dizzying nausea. I couldn’t eat anything without severe repercussions. Utter misery.

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@UnwantedGuest3

3 years

8. Cognitive impairment: I refuse to use brain fog because that sounds cartoony. There is nothing cartoony about this symptom. Gaping black holes in my memory. Missing words, names, faces. No recall. A mental vacuum. Fucking terrifying.

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Dave.

@UnwantedGuest3

2 years

One night I woke up unable to breathe, pains shooting up my left arm and the horrifying feeling of my chest being slowly caved in.

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Dave.

@UnwantedGuest3

2 years

#longcovid / chronic illness fucks you up. You feel shit. Every. Single. Day. And if you do try and push it, and try to enjoy today, you pay by losing your tomorrows. It steals your present and your future. And it obliterates your past. You are no longer what you once were.

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Dave.

@UnwantedGuest3

3 years

I’m a participant here in Oxford in the trial of AXA1125, a therapeutic for the restoration of mitochondrial dysfunction (for #longcovid related fatigue and PEM). This is being run out of Oxford University Hospitals. They are still looking for participants. 1/5

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@UnwantedGuest3

3 years

1. Lungs that burnt and felt full of flour making it impossible to get a full breathe or to “feel” a full breathe. For six months. I will NEVER forget that suffocating feeling. Every day and night. It has left me traumatised.

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@UnwantedGuest3

3 years

And all of this is compounded by the fact that there are no answers. No one knows what to do with us. There are lots of theories and some things work for some people. The best we have, after two years, was given to us by our friends in the ME/CFS community. Stop, rest and pace.

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@UnwantedGuest3

3 years

5. Fatigue: this is a shit description of the existential exhaustion I felt every day for at least 1yr. A flat battery that sleep barely touched. Like the most severe jet lag and hangover I’ve ever had. Together. Every single day and night.

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Dave.

@UnwantedGuest3

2 years

I’m feeling feverish, difficulty breathing, chest compression and dreadful waking insomnia the last few days. One of these days it will be a heart attack or something requiring urgent care and I won’t know because this has been my #longcovid reality for the past 940 days.

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Dave.

@UnwantedGuest3

2 years

So if you are a wanker like me, who thought that my “superior” diet, “superior” fitness and go get ‘em attitude would see me through any illness, then please think again. Covid, even “mild” covid, can rob you of EVERYTHING that you hold precious. 6/7

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Dave.

@UnwantedGuest3

3 years

2. Chest pain and compression for 12 months that made it feel like I was trapped under the wheel of a car. The pain was agonising and radiated down the left arm. I should have called 999 every day for a year. I did once, and all tests were clear.

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Dave.

@UnwantedGuest3

3 years

6. Pain. Everywhere. In joints, in muscles, in tendons, in my head. Everywhere. And nothing helped it. It’s like all the deepest tissues had been stretched out on a rack and whacked with a hammer. The pain in my back and chest was insane and still troubles me today.

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Dave.

@UnwantedGuest3

2 years

I don’t have much to offer other than my own experience in this. And also to say precautions and mitigations against Covid are available. Take them. Use them. The alternative - this alternative - is dreadful. Trust me. I’m living it. To leave you with the wise words of @maosbot

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@UnwantedGuest3

2 years

When I didn’t recover from a “mild” case of covid back in March 2020 and started to helter-skelter on the #longcovid symptom slide, it was #pwme who reached out with solidarity, it was #pwme who had the best advice and it was #pwme who helped me navigate the madness. 1/2

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@UnwantedGuest3

3 years

4. Both types of nausea - waking and falling asleep - for 9mos. I’ve got 2 kids and know what sleep deprivation feels like. This was next level. I was SO tired but if I was lucky enough to fall asleep I would wake within minutes as if injected with a litre of coffee. Exhausting.

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@UnwantedGuest3

3 years

7. Tinnitus: howling screeching whining tinnitus in both ears every day for 20 months. Like a personal dial up modem. When I wake up and when I fall asleep. I try to ignore it but some days it drives me mad. I don’t want to think about the cause either…

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@UnwantedGuest3

3 years

There were and still are (many other symptoms). I fucking hate that I now have PEM and cannot exercise or drink alcohol. My grip is weak now. My eyesight is failing. I look like shit most days (maybe I did before?!) and feel like I’ve aged 30 years.

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@UnwantedGuest3

3 years

3. Relentless stomach pain, cramps, nausea, reflux. For 14 months. Nothing bought any relief. Every item of food I consumed just aggravated it. I’ve lost 7KG and I was in good shape before. None of my clothes fit any more.

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Dave.

@UnwantedGuest3

3 years

Today is my 2yr #longcovid anniversary. Tonight I ran for 10mins, rowed for 5mins and cycled for 15mins. This would have been unthinkable 3 months ago. There is hope. (NB I’ve been gently building up to this over months, had clear scans on organs and monitored HR throughout)

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@UnwantedGuest3

2 years

So forgive me when I snort at the idea of the pandemic being over. For an estimated 2.3m people in the U.K. alone, the reality of #longcovid means that we are still stuck in the pandemic. Unable to be fathers. Unable to be husbands. Unable to be sons. Unable to be brothers. 5/7

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Dave.

@UnwantedGuest3

2 years

@Griff9John Good grief you’ve had a ride. I’m glad you raise PTSD. This is something we need to talk of more. Some of these symptoms are terrifying. Particularly when most doctors are just looking at you and saying there is nothing they can do.

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@UnwantedGuest3

1 year

Right. We are 3yrs into a pandemic and there’s been tonnes of research and investigation into how to prevent #longcovid . I’ve trawled through all the papers, the research and the science and put this thread together to help you prevent this illness. Sit back, settle in: 1/n

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@UnwantedGuest3

3 years

I’ve been accepted onto the AXA1125 trial here in Oxford, UK. I’ll be back to hospital in the next few days to do the 6min walk test and pick up the trial drug (5 animo acids, leucine, isoleucine, valine, arginine, glutamine and N-acetyl-L-cysteine) OR the placebo. #longcovid

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Dave.

@UnwantedGuest3

2 years

I get fed up with myself for trying new #longcovid “cures”. I hate how I swivel when there is the slightest suggestion of a new miracle. My bathroom cabinet is full of useless, ££ “cures”. I hate how desperate I have become. That said I’m going to give nicotine patches a go. 🤦‍♂️

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@UnwantedGuest3

3 years

I’ve just seen a reply from someone incredulously questioning a tweet from someone who stated they have had #longcovid symptoms for 340 days and counting. I’m at 398 days and counting. As soon as people wise up to the fact that covid is not *just* about deaths, the better.

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@UnwantedGuest3

2 years

Ah bollocks. A few days short of my 3yr #longcovid anniversary and this happens. Putting faith in my immune system. See you all on the flip side.

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Dave.

@UnwantedGuest3

1 year

1. Don’t get covid

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Dave.

@UnwantedGuest3

3 years

700 days post “mild” covid infection: Persistent tinnitus, headache, de-realisation, agonising costochondritis, dysfunctional breathing, joint / muscle pain, insomnia, post exertional malaise, exhaustion, gastro-intestinal issues (colitis, reflux, nausea)… a horror journey. 1/9

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Dave.

@UnwantedGuest3

3 years

What are the antivirals that are available to treat Covid that our PM has just referred to as part of the reason for the end of all restrictions? Genuine question.

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Dave.

@UnwantedGuest3

2 years

A virus that has stopped me in my tracks, put me on pause, that’s trapped me in my own bastard carcass, left me with whining tinnitus, crushing chest pain, insomnia, de-realisation, constant headaches, black dog nausea, deep joint / muscle aches and the fucking list goes on. 4/7

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Dave.

@UnwantedGuest3

3 years

#longcovid / chronic illness is awful for people who suffer from it but the impacts extend far beyond the individual. This tweet is a shout out to all those incredible people who have had to watch their loved ones shrink in front of their eyes but still support them regardless.

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@UnwantedGuest3

3 years

After a shitty few weeks / months with #longcovid relapses I’ve felt incredible this weekend. Today has been monstrously busy both physically and mentally but I’m getting to the end of the day today still with fuel in the tank. I’m remembering how I used to be. God it’s lovely.

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@UnwantedGuest3

2 years

I see this and it’s brilliant. I love it. And sadly I also hate it. Because I SO desperately want to be in there with them, shredding it and leaving everything on the floor with them. Encouraging them. Pushing with them. But I can’t. I can’t because of a stupid fucking virus 3/7

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@UnwantedGuest3

7 months

It’s my 4 year #LongCovid anniversary. The first 2yrs were dark, nightmarish, traumatic. There’s been some improvement in the latter 2yrs, but setbacks too. Each setback weighs heavy on the mind 1/.

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@UnwantedGuest3

2 years

So to all #pwme and chronic illness, thank you for welcoming us into your community, for supporting us, for being patient with our questions, our fears and our concerns. None of us want to be here, but we are stronger together. Thank you. 🙏 #MEAwarenessDay #MillionsMissing 2/2

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@UnwantedGuest3

3 years

This is spot on. #Longcovid IS “severe” illness. Yet public health messaging is still fixated on the binary survivors / deaths narrative. Until we introduce a third outcome - that of “alive, but barely” - I fear we are not fulfilling a duty of care to the wider population.

Shaney Wright

@ShaneyWright

3 years

If I didn't have #LongCovid , didn't know ppl with it & didn't follow research, I likely wouldn't think of it as the utterly devastating, life-ruining, chronic illness it actually is if all I kept reading/hearing was, "sufferers had lingering symptoms for several weeks or months".

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@UnwantedGuest3

2 years

Since I’ve been sick, the kids have turned the right age to go to Blaze. I watch them coming out, red faced, exhausted and talking excitedly about what their young bodies can do. They are realising the potential of the human body, exploring their boundaries, pushing limits. 2/7

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@UnwantedGuest3

3 years

@OnceWasGloria I think it’s important to remain positive if at all possible. I do believe that the majority of us will get better in time. I am much better than where I was (December has been a major leap forward). I just despair that our public health messaging is so two dimensional.

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@UnwantedGuest3

1 year

@tube_garden @laurenancona As someone who has had LC for 3yrs+ I am furious that “don’t get covid” is the best we’ve got. That’s the point of the post, to highlight the absurdity. Unfortunately we have ALL been let down by the orgs that are meant to protect us. Direct your anger at the right people.

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@UnwantedGuest3

2 years

Three days of drinking and dancing at a festival, got home 5pm on Sunday, up again at 2am on Monday for drive to Gatwick and 7am flight to Crete. Mon and Tues relaxing by pool, water aerobics at midday. Sunset walks. #longcovid 29 months. (Some form of) Recovery is possible.

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@UnwantedGuest3

2 years

I’ve just done a 15min presentation. I’m now feeling that paradox of crushing fatigue and edgy, wired alertness. Impossible to describe, deeply unpleasant. Before Covid I used to climb mountains, do triathlons, work/play hard. Now I can barely give short presentations #longcovid

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@UnwantedGuest3

3 years

@Dr2NisreenAlwan Long Covid is a mass disabling event. It has ruined me for the last 16months. Previously super fit, previously super healthy. Covid doesn’t just kill. It maims too. 10% of sufferers will get it. We need to #countlongcovid . If we aren’t measuring it, we aren’t managing it.

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@UnwantedGuest3

4 years

#notallmen is a shitty hashtag for a shitty take. If you are a father with a son start the conversation there. If you are a man with male friends, have the conversation there. Rape murder and harassment of women is not on women. It’s on us, as men. Every single fucking one of us.

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@UnwantedGuest3

2 years

What happens to organs starved of oxygen and fed clotted blood over many years? What happens to the oesophagus following exposure to years of silent acid reflux from a GI system that’s all out of whack? What impact does all of this have on our life expectancy and quality of life?

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@UnwantedGuest3

3 years

I’ve just finished my phased return to work plan, 17mo after mild #cv19 infection. I’m still not well, #longcovid is a horrific maiming illness. I’m petrified about what this new school term will bring. The government seems to have given up. Good luck to everyone.

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@UnwantedGuest3

2 years

Just had the Pfizer bivalent vaccine and the flu vaccine together. Obviously pro-vax and obviously worried about impact on #longcovid symptoms. Let’s see how the next 48hrs go.

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@UnwantedGuest3

3 years

Spoke to infectious diseases today. Was told there is no reliable evidence (yet) that Covid triggers return of EBV or other chronic illness (ie Brucella) symptoms. The appointment lasted five minutes. He was very certain.

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@UnwantedGuest3

3 years

I’m glad that early research *suggests* that Omicron is milder but all the major news outlets are still only measuring outcomes in terms of deaths and hospitalisation. It’s not binary. If 10% are getting #longcovid there’s a third tidal wave that 100K cases per day will cause.

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@UnwantedGuest3

3 years

Two years ago today that I contracted a mild case of #CV19 , before vaccines, before masks, before lockdowns. My life has been turned upside since by #longcovid with waves of frightening, debilitating symptoms, desperation and deterioration in mental and physical health 1/12

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@UnwantedGuest3

2 years

It’s hard not to think about this stuff during yet another nights sleep cut short by #longcovid insomnia. (And what impact does years of insomnia have on long term cognitive function?!) 3/3

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@UnwantedGuest3

2 years

My new trial has started (n=1). Omega 3, digestive enzymes and a probiotic to fix the mucosal wall in my gut (plus some dietary tweaks to create more DAO, reduce histamine etc). This is on advice from the nutritionist and following blood and stool analysis. Let’s see… #LongCOVID

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@UnwantedGuest3

10 months

Fucking hell there are so many anti-vaccine bots on this hell site at the moment. Public health is a national security issue. So I ask again. Who is it that benefits from a poorly, sick, weakened and disabled U.K. population?

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@UnwantedGuest3

3 years

@BynThereDoneTht Mate I’m so sorry. There’s a whole other thread to be written on gaslighting. Fortunately I’ve had pretty excellent support and medical investigation. But I hear others stories and realise this is not always the case. I’m sorry you are sick. And I’m sorry you are having to fight.

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@UnwantedGuest3

3 years

And the heart scan was super reassuring. That in itself was priceless. They are also a fun and supportive team, doing really cool stuff and I felt very cared for and looked after. And it’s good to know I can help in some way. Interested? Email pasc @cardiov .ox.ac.uk 5/5 ENDS

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@UnwantedGuest3

2 years

I’m going to try sessions in an infra red sauna and floatation tank tomorrow to see if that helps with any #longcovid symptoms. A friend with CFS says it’s really helpful. At the very worst it will be 90mins of enforced rest which can only be a good thing.

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@UnwantedGuest3

2 years

Day 23 - AXA1125 #longcovid drug trial: I can’t wait for this to be over now. I feel constantly sick and tired (more than usual LC baseline) and my stomach is on fire. I have started to dread the 2x daily ritual of necking this gross, milky Fanta. Glad the end is in sight. 1/3

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Dave.

@UnwantedGuest3

2 years

My 2nd CV19 infection, over 1mo ago, has, in addition to already robbing me of an active life, increased fatigue, increased tinnitus and robbed me of my sense of smell (this is a new symptom for me).

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@UnwantedGuest3

2 years

#AXA1125 - Day 2 of #LongCovid trial: so having completed the 6min walk test and another range of blood and urine tests I was sent on my way by the lovely team at #Oxford University Hospital with the biggest bag of drugs / placebo I’ve ever had 1/2

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@UnwantedGuest3

1 year

I went to Truck Festival this weekend. Three days of sleeping in a tent, walking 20K steps a day, drinking beer and eating junk in the rain, mud, sun and wind. Early mornings and late nights. Stimulus everywhere. No subsequent PEM. I couldn’t have done this two years ago.

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@UnwantedGuest3

3 years

So if you had Covid, have been diagnosed with #longcovid (particularly fatigue and PEM) and were NOT hospitalised and are interested, here is some more information 2/5

Axcella commences trial of AXA1125 for long Covid-19 treatment

Axcella Therapeutics has commenced a Phase IIa clinical trial to assess its therapy, AXA1125, to potentially treat Long COVID patients.

www.clinicaltrialsarena.com

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@UnwantedGuest3

3 years

@AllyNavv I’m at 21months just behind you, part of the early adopter crew. So thrilled for you that you are starting to see sunlight again. I hope you (and all of us) can get back to athletics and travelling again soon (god I miss travelling). X

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@UnwantedGuest3

2 years

AXA1125 #LongCovid trial update: there was a (20%) improvement in mitochondria function based on phosphocreatine rebound noted between 1st (baseline) and 2nd (end of trial) stress MRI. Very interesting, but hasn’t translated to any noticeable difference in the day to day though…

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@UnwantedGuest3

2 years

@foxacheUK Thanks fellow Dave. Back atcha! ☑️ Me (calling NHS 111 in March 2020): I can’t breathe, I’ve got shooting pains up my left arm and my chest feels like it’s caving in ☑️ NHS 111: we’re really busy. Don’t call back unless your lips turn blue and you pass out Stay safe Dave.

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@UnwantedGuest3

3 years

What have I learnt? Chronic illness is utterly shit. It is all encompassing, insidious, pervasive. It is scandalously ignored by research, media, funding and political will. It can lose you your friends, your family and your job. It leaves you alone, vulnerable and terrified 2/9

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@UnwantedGuest3

3 years

Currently in A&E and being kept in over night and pumped with antibiotics ahead of a CT scan tomorrow. Potentially appendicitis, potentially gastroenteritis; the scan will give more clarity. I don’t fucking need this tbh. Particularly given I’m miles from home / miles from family

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@UnwantedGuest3

3 years

I’ve been tracking my antibody levels since Spring. I had 681u/ml 3wks after my 2nd AZ. After 6mos I was down to 158u/ml. Now, 3wks after a Pfz booster I have >2500u/ml. That’s an incredible jump. Still masking and limiting social contact though. Cannot face #longcovid again.

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