To wonder why the fuck long covid isn’t considered a serious outcome

[Clutchingatfog]

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

Covid can leave people with a breathing pattern dysfunction even if they didn't have it badly. This can contribute to fatigue.

There are NHS physiotherapy videos on you tube that teach diaphragmatic breathing. This has really helped me - who'd have thought you could 'breathe wrong'?

So is Long Covid real? I’ve heard so many conflicting things. I remember reading that it was psychosomatic and highly exaggerated but I do have a cousin who has it and it’s wrecked his life so I’m very defensive of him/the illness

No millions of people just suddenly decided to get lazy after having Covid.

I mean I loved my job and running but one day I just thought why bother doing things I love? FFS!

You say your cousin has it and it has wrecked his life. Yet you question if it’s real or psychosomatic..

I believe it is real but a pp on this thread said it is mostly psychosomatic. I have heard that before but assumed it was a belief held by science deniers/conspiracy theorists. Just asking as google gives mixed answers

im sorry the way i worded my previous post was insensitive

@NameChange0101010101 as I said on one of my previous posts that was the thing that helped me most !! 30 mins a day on the bed of Wim Hof breathing technique - the minute I started it I improved day by day

@Lomaz - I bloody wish it was psychosomatic - if that were the case, I could be cured, instead of being disabled.

I’m not getting at you - I know you were commenting on another post.

I have no idea if it was long COVID or an immune response to the vaccine but early into the outbreak I started coughing, just a little at first like throat clearing. It got progressively worse until I could hardly breathe at all. I also started suffering with sinusitis. I'd never had any nasal or breathing issues before. I suffered for a whole year. I was given inhalers which were useless and steroid nasal sprays which were also useless. One night I nearly died as my lungs closed up so much I could hardly breathe. I also had no taste/smell and was off work for nearly a year I was diagnosed with long COVID even though I have no idea if that's what I had. I gradually got back to normal and have been pretty much okay until over the last few weeks. I have contracted some sort of virus and my breathing has got bad again. I'm hoping this is short lived! I still have no idea if COVID or the vaccine was responsible for what happened to me. I always tested negative,

Thank you for posting this. There is information there that I didn't know.

The Govt do not want to recognise it as it would be expensive if they did.

My Ds got covid badly in Oct 23. Not great all winter on & off 'sore chest' (ASD so 'not sure how sore' & reluctant to see GP who had behaved so badly re ASD) July 24 had an overnight episode then really off next day. Went to A&E & he was in heart failure. Now aged 20 he has scarring on his heart that will never heal & he will always be under Cardiology for review. He now also has POTS. I think tthat Long covid is treated as dismissively as 'yuppie flu' was many years ago.

I don't believe it is psychosomatic but I do think it is like any other post viral syndrome that affects people to a greater or lesser degree.

It isn't specific to covid. Anyone can be flattened by any virus, the key is to eat well, get up get out and focus on wellbeing. If covid leaves anyone seriously unwell for months then there will something else going on be it fibro/me/depression.

😂😂😂😂😂

Yeah it’s that easy to get up and go.

Why didn’t we think of that?

I've had a post viral illness and yes it is very hard to get up and do stuff but it is the only way to get back on track. Lying in bed all day does not help, it leads to more problems with poor sleep as you aren't doing anything, poor mood as you're bored and depressed, poor appetite as no energy used. Then people think poor sleep amd poor mood is because they have covid 3 months ago.

Get up, get out, eat well and then you'll sleep better and be able to fight any future bugs and viruses.

Might feel like one. Doesn't mean to say it's not doing damage to your body.

Not disputing that working mums experience fatigue, or trivialising how your own fatigue feels to you. But as an ME sufferer I can tell from your post that you're not talking about ME-level fatigue. You wouldn't be calling it spurious and trotting out the kind of dismissive cliches you are, if you were. And, as pps have pointed out, you wouldn't be able to 'get on with it.'

So sorry for your loss. This kind of thing is why it makes me angry when people trivialise what Covid can do.

Do you know what crashes are? And how to pace?

Becayse getting on with it is the opposite of what both Liong Covid and Chronic Fatugue clinic say.

Otherwise you crash more and more and end up worse.

Yoh don’t seem to understand the 5p’s

Pacing
Prioririse
Postpone
Prepare
Pause.

Sorry for misunderstanding you!

It’s very frustrating for those suffering when it’s told it’s in their heads, or to just push through the fatigue. I used to run long distances on very little sleep/ with hangovers and this is a different level of fatigue. I also went through chemotherapy- this is worse!! I could actually go for a run and socialise whilst on chemo.

I don’t think people understand how debilitating it is. Sadly there are cases lf people with long covid/ME/CFS taking their own lives. Because you lose everything really. and there doesn’t seem to be a cure. You either get better over time or you don’t…

How did you manage the long absences? I ask because it looks like our 14 year old will be in a similar position as we come to the end of the first year. Do you home-school when he cannot attend or is he unable to learn at home?

Yes - silly me - I must be imagining the dragging, perpetual exhaustion, the muscle weakness and fatigue, the breathlessness, the brain fog. I eat a good diet - lots of fruit and veg, decent protein, cooked from scratch. I can’t go out for a walk because I couldn’t get beyond the end of the drive before I would have to turn back. I have a wheeled walker, which I have to use, if I want to walk round a shop - something I have done exactly 4 times since I got covid (in the second wave, so years ago).

Kind of the opposite really. I was nearly better then jumped back in to exercise, overdid it and 7 months on I still have issues. So the only way to deal with post viral fatigue is pacing. You work out what you can do )which may not be much). Hold that level and very slowly increase.

Long Covid falls under ME/CFS caused by a virus.

I think it’s the same with lots of conditions- autism, ADHD, CFS, fibromyalgia etc etc where there isn’t a straightforward ‘test’, rather it’s based on symptoms. People decide not to believe it’s a real thing.

Yeah, so the poster doesn’t have ME/CFS/LC.

As PEM is the marker of all these. And if she can get up and get on with things she isn’t living with the PEM sword of Damocles over her head.

Yes I didn't mean get up and do a high intensity fitness class I meant get up, get dressed and go to the shop. Have goals every day not matter how small

Absolutely agree wirh pacing yes, but some do just give in stay in bed or on the sofa and the whole immobility/poor sleep/ poor mood becomes a vicious circle.

Honestly you have no clue. Your theory works on normal healthy people who are just run down after having a virus. For those of us who are living with ME/CFS/Long Covid/Fibromyalgia, doing those things makes us even more sick.

If I forced myself to go out to the shops on a bad day, I wouldn’t be able to get out of bed for the next few weeks. I’d have a massive crash.

You seem to know better than our specialists though. Are you a Consultant Immunologist?

No no they don’t.

I couldn’t even wash my own hair. As for getting up and getting dressed. I just couldn’t. Going to the toilet could cause a crash.

How on earth was l supposed to get up, shower and get dressed? I would have if l could.