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.

You do realise many people have days when they physically can't get up, never mind getting dressed and going somewhere? And I speak as someone who loves going for walks and hates having to be sedentary, but sometimes has to be realistic.

'Have goals every day not matter how small', do you not think those of us whose energy is severely compromised are already trying our best to do this? Please try not to be patronising.

Any poorly understood condition tends to be shoved under the carpet. Also huge numbers think its not long covid but vaccine damage and therefore 'their own fault for being sheep' 🙄

'Have goals every day not matter how small', do you not think those of us whose energy is severely compromised are already trying our best to do this? Please try not to be patronising'

I'm not being patronising I'm speaking from experience. I've had a serious illness that could have had me housebound still if I'd let it.

Physical wellbeing and mental wellbeing are both obviously massively linked and saying oh I had flu last year and have post viral issues so can't do much will lead to a poor mental state and lack of motivation.

We need to push ourselves to optimise our lives. Of course we all have off days, life is exhausting and hard so yes have the odd duvet day but then get up and get out.

My goal is often to not overdo it it and make myself worse!

Its only when i stopped trying to push through that it's started to get better. Pushing through doesn't work! It can literally damage your mitochondria (the organelles in your cells which make energy from oxygen. Covid damages our ability to repair them).

Visible podcast and The long covid clinic what you can do you tube channel have good info about the latest science.

BTW 'Psychosomatic' doesn't mean 'they're making it up' - it literally means 'mind body' - that there is both a mental and physical element to a disease.

Those who have all the answers should get on to Wes Streeting - he'd be glad to hear the NHS doesn't need to run clinics any more, we can just pull ourselves together and go for a nice walk 🙄

Have you ever had PEM?

She might not simply be a CF. I also avoid moving chairs now, because it just exhausts me. Re the carrying empty mug, maybe she's just knackered at the end of the session. I did a choir session recently and it took me a day and a half to recover, what with all the standing up & sitting down along with the effort involved in the actual singing. Believe me, people don't want to be soggy biscuits (!) but this is what long covid does to us.

You really have no idea what you are on about. Despite many on here telling you. You can’t push through PEM - it will make you worse! Not just for one day but it can set you back months. I mean I didn’t believe it at first either. So I kept pushing and trying - not intense exercise but a little more than my body was capable of.

Don’t you think we’ve all tried to do more? Walk that bit further etc. But when it makes you end up actually being able to do less and less then you change your strategy. Nobody wants to lie in bed all day FFS. It’s awful and depressing.

Me too. It’s only when I stopped pushing that I very slowly started to improve. But if I unknowingly overdo it then it’s a huge setback. And back to doing a lot less

YABU.
And, I just came out of the most horrible ten days with COVID. Never vaccinated.
Long COVID?
I'm not familiar with the term.

@Gloriia - setting goals/pushing yourself is a way to recuperate from plenty of illnesses or injuries - but we are trying to tell you that it does not work for Long Covid.

Once a week, I go out - I get driven to the library, walk a few metres into a room, where I spend 2 hours at knitting group. This completely knocks me out for the rest of the day and the next day. I am too exhausted to even pick up my knitting the next day.

I never wake up refreshed. Any time I try to do more than just staying quietly at home, I have a massive crash afterwards. I am having regular physio (which I am paying for out of my DLA, because the NHS has dismissed me), and do my exercises regularly every day - but my physical condition is not getting any better - in fact, over the past couple of months, I have gone significantly backwards.

But yes - please carry on telling me how I’m simply not putting in the effort to recover.

🙄

Whag do you want? A medal?

Consider yourself blessed to have no knowledge of Long Covid, @Luckyingame - I am disabled by it.

There are plenty of posts describing what long covid is - for me, it is total, constant exhaustion, muscle fatigue, breathlessness, inability to walk more than a few metres, brain fog.

I’m so sick of the brain fog.

Stuggling to read these messages today!

I've had long covid for five years - I caught covid just before the first lockdown and it never went away. However - I think I'm nearly recovered. Eg. I do yoga every day and can now do half an hour whereas before it was five minutes. So I just wanted to say that there is hope! But you need to rest after each task and not try to push through it.

But with respect, you may have a serious illness but it’s not the same serious illness as we have.

When we use energy, our bodies literally attack themselves. As other pp have already pointed out, this is called PEM. This doesn’t happen with other illnesses. We are advised by our specialists that pushing ourselves is the very thing that we need to avoid above everything else. If pushing ourselves would help our recovery without suffering PEM like it would with other illnesses then we wouldn’t have LC/ME/CFS.

I've been tired as the mother of newborn twins, when I felt as if I was getting no sleep at all for days on end. As opposed to (25 years later) fatigued with long covid when I felt so ill that I contemplated calling an ambulance. It was a really horrible feeling. It happened twice and I hope I never experience that again.

How did you help yourself, please? Do you mean just forget it and push through it?

I don't want to be simplistic, but it's a very real phenomenon "the less you do, the less you want to do ". Then your mental health dips (depression, anxiety, social avoidance, more fatigue) and it can become a hideous vicious circle. And the label of the diagnosis can be a reassurance that it's ok to feel that way and carry on. It has a psychological affect.

I really have had debilitating fatigue in the past. But deep down I knew I was going to have to get myself out of it somehow because nobody else was going to. And of course the general public haven't got sympathy: people are at maximum capacity nowadays and without offence, when they see an able bodied middle age person stating "but you just don't understand my fatigue" it can be insensitive and a verbal assault.

In the past I've suffered horribly with my MH/paralysing indecision/like I'm wading through quick sand just trying to get up and get ready. I'd go off grid at those times. But actually when i did force myself up , get dressed and get out , I felt better. Not before, not during, but after. Even a little bit of fresh air can cause a proper sleep to occur where you're actually a "sleepy" tired. Fatigue tiredness is very unrefreshing and sleep makes no difference. Because not using muscles or seeing fresh air will cause a horrible headachey fatigue that just carries on

It's so easy to make excuses not to. Or say "I can't". But actually, it's likely you physically can do a very small potter in the garden and then build on it. You can't "give up". If you really have the mind set up that this thing has beaten you, then kudos to you. But you can't expect the general public to have ongoing copious amounts of understanding and sympathy.

You. Just. Don’t. Get. It.

Give up and accept that these other posters are talking about something you have no concept of. You are effectively telling them to put a sticking plaster on a severed limb. I’m embarrassed for you.

The same thing happened with ME didn’t it? Health professionals refusing to believe it was a real condition and sufferers being labelled as hypochondriacs, having mental health problems or just being lazy.

Honestly, to the people who seem to be of the opinion that getting up and getting out, taking walks, eating better will magically improve these conditions are incredibly patronising and harmful.

Do you honestly think children/teens with this are choosing to miss out on seeing their friends, play or watch TV? The same applies to adults, we’ve had our lives interrupted by this and could think of a million things we’d rather be doing than having to build rest breaks into the day.

Studies have said that ME/CFS patients have a worse quality of life score than cancer patients. I don’t particularly like that comparison but it highlights the impact felt by many people with this disability.

Of course there are liars trying to fiddle the system, they use every which way they can. I have yet to meet one using LC, as a cover because that’d be a hell of a long con to run. Lots of people fake a bad back for high prescription painkillers. Does that mean every person you know with a bad back is trying to scam meds off the Dr?

I suggest the skeptics on here should watch the documentary Unrest and read up on Maeve Boothby-O’Neill and the way she was treated in the run up to her death.

I remember for years doctors telling me I needed to "push through" the fatigue.
But it turned out I had Myasthenia and it was not only deeply harmful but actually "dangerous" to push through. The PEM described with long COVID /MEM sounds very similar to what happens to myasthenics and therefore I can totally understand why "pushing through" is harmful.

The trick, and it's not easy if you are a "get up and go" type person is to actually learn to do less.

We have to learn our warning signs and stop before we get there. Otherwise we crash.

No!!!

The first thing is recognising that your brain is trying to protect you and keep you doing as little as possible.

The other things are exposure. So try and do a little tiny bit more and keep building it up.

And talking to your brain. It sounds stupid, but this is what really worked. Tell it it’s safe and doesn’t need to protect you. You have to kind of talk to it as you do stuff and it eventually starts to let you do bits more. Then once you’re confidence is there you move forward.

Accepting that your brain can unlearn trying to constantly protect you.

Lots of meditation and om’ing to soothe the nervous system.

Where are you based?

How did he recover?

Mental health fatigue is not the same as actual physical fatigue. Why can't you grasp that?

In my experience it precisely the driven people who suffer the most with long COVID /ME or my condition (Myasthenia) because we keep trying to force our body and then it crashes. With my condition the more I move the more my nerves receptors are destroyed, so if I don't stop before my symptoms get bad I get to the point I cannot open my eyes, speak or swallow. I am paralysed at that point. No amount of will power can make my nerves speak to my muscles.

your posts just demonstrate how utterly ignorant you are about these conditions and how they manifest