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.

But what if you don’t have the energy to give back?

This is what you don’t seem to understand. There is a small limited supply of energy. It doesn’t spring back like with normal people. And yes, it can be the difference between using a dishwasher and not. I find dishwashers really tiring. Bending takes a lot more energy than sitting and eating cake.

Why would you expect someone with severe chronic fatigue to set up and dismantle stuff?It’s crazy. So mean

I absolutely understand where you are coming from, @Clutchingatfog - I was in hospital with Covid - thankfully just on oxygen, not ventilated - but I ended up with long covid. I am now disabled - I can barely walk any distance or stand for more than a few minutes, I get breathless walking back from the downstairs looking, I haven’t cooked a meal for years, and dh is basically my carer now. We used to visit stately homes, art galleries, shopping centres, but I can’t do any of that now.

Covid and long covid have decimated my life. I am on DLA (the Scottish version of PIP), but have been refused by the long covid service in Scotland. Life is pretty shit.

I absolutely understand the limited supply of energy. Its strange that that energy always seems to be there for the nice stuff and to suddenly deplete for the tedious stuff.

But of course! If you have limited energy why wouldn’t you prioritise the nice over the boring?

Me too. I haven’t cooked for 2 1/2 years. I have no life. It’s crap isn’t it? X

If that's to do things purely for you then absolutely prioritise the good stuff. But if that means you turn round at the end of the very enjoyable part of the session( that you have fully taken part in) and say you have to leave , you are leaving the huge clearing up part to other people( who also have stuff going on in their lives). It can't just be left. Everyone else understands that and does something, however small. In the case of my group the long covid sufferer gets up and leaves without any attempt to do anything.

Its the energy equivalent of people saying 'no wonder all these families have to use food banks, they're all out spending their money on lattes'

God forbid they do one little thing for themselves occasionally to make life worth living.

Because that takes a ton more energy than just sitting! Why can’t you see that?

Energy is a budget. You can only spend what you have, if you go over you crash.

Lying down takes least amount of energy, sitting takes a bit more. Hefting stuff around or tidying is a whole new level and takes a lot more. Why risk busting your budget and have a horrible crash which wipes you out for days? Different activities use different amounts of energy. You have to calculate the least taxing all the time.

But those people presumably then go home and do a bit more pottering around. The long COVID/ME /etc person literally probably goes straight to bed and they probably had to rest all day before hand just to function for that hour or so.

I don't get why you can't compute that.

If by doing the bits and bobs at the end you then can't function at all afterwards then speak up.

I've had long covid for four years. I previously had an active successful career, juggling senior volunteering roles and a personal trainer.

Then I couldn't even cross the road to put my own bins out, couldn't climb the stairs to take a piss, and had to give everything up.

I often doubted myself, and fretted that it was all my head. I'd try and play loud music on headphones to 'distract' myself from something that I thought must surely be psychological.

Anyway, it wasn't. I am much, much better now that I was 12 months ago - but it was three years of hell. I've been applying for jobs but I know people will think I'm a flaky middle-aged woman with imaginary diseases - this thread proves it.

I doubted these types of conditions too. That doubt was a privilege.

Yes. That really sums this all up. Doubt is a privilege and ignorance is bliss. As we can see on this thread. Such a huge lack of not only understanding (which I get as it’s hard to understand crippling fatigue - but also a huge lack of empathy).

I used to be a personal trainer. I would teach a class, then walk my dog 5
miles then go for an 8 mile run up and down hills. A wet lettuce I was not! Very fit and healthy.

Then what appeared to be a mild Covid infection landed me with crippling fatigue, chest pain, heart issues…so I’ve had to give so much that I Iove up.

The science part - Covid can affect many organs of the body. New research shows it damages the vagus nerve which influences our nervous system- that’s why we get stuck in the ‘fight or flight’ part and never get good rest. That causes immense exhaustion.

Yes there has always been post-viral fatigue. Especially with flu and glándula fever. But the difference here is that these diseases are not constantly circulating like Covid. Most people get the flu once every 10 years…We are not building any immunity. Being fit and healthy doesn’t protect you from long Covid but keep telling yourself it does! How many times do you think kids are picking up Covid in school?

Lots of children are affected - they can’t go to school. It’s devastating.

Unfortunately the law of averages says more and more wil get this. If every Covid infection has roughly a 10% chance (some studies have it higher/some lower but it’s still significant) of giving you long covid.

It’s more prevalent in women aged 40-55. I have lots of theories why but that’s a whole other thread.

Just be aware that this is devastating for those affected and it could happen to anyone. So educate yourselves a bit more..

Loads of athletes affected. People having to give up their sporting careers. It’s doubtful they are being lazy!

@Goldfsh you have summed it up beautifully - and I have a lot more empathy these days with many chronic conditions- because 10 months of it for me made me feel like I was heading for the psychiatric unit !

Having had fatigue (while recovering from a non-Covid medical condition), it is not something you can understand from only having experienced tiredness. It's a bit like saying you can imagine what being depressed is like because you have felt sad, or having anxiety because you have been worried. Fatigue is in a different league from tiredness, and can't be pushed through.

I had the "privilege" of my condition being physical and undeniable, and still experienced a lack of understanding. I think it's down to a wider issue where people just don't believe others (even those who are close to them) when they describe their own experiences, just because they themselves haven't been through it. It seems to be a deep psychological stumbling block for humanity and I'm not sure how it can be improved.

I would agree with that. As one who has a chronic condition I find that little sympathy is given compared to an acute one and there's a general expectation that you just have to get on with it (and pop another pill usually 🙄).

Apologies, have not read the whole thread. What are the actual symptoms of LC? It appears many symptoms are attributed to it and no one can tell for sure that those symptoms are actually LC or something else?

There are over 200 symptoms linked to LC. And that is part of the problem. That shouldn’t mean it’s dismissed though.

Like chronic fatigue and ME unfortunately it’s a diagnosis by ruling out everything else it could be. As there are no diagnostic tests yet.

So if you have Covid then are left with fatigue for weeks/months afterwards you would have blood tests to rule out everything else it could be. Then you are told - post-viral fatigue/ post Covid syndrome as it’s now being called.

We know viruses can knock out our nervous system (this was confirmed by my doctor).

You have chest pain. Lungs are scanned for damage. If there’s no damage then chest pain could be inflammation. Covid causes inflammation. It also cause brain fog,
muscle pain, POTS. PEM, heart issues etc.

Hopefully soon there will be more specific diagnostic tests (so people can understand it’s not just in one’s head..)

For most people it's just fatigue, but it's not fatigue in the sense that you've ever had it before if you are healthy. It's like you've woken up and you are 89. Your arms and legs feel heavy and don't respond properly to the things you need them to do. Standing up for a minute is exhausting and you need to sit down. You have no energy in any cell of your body.

The nearest I came to it before I got covid was after doing a 'five valleys' type walk where I hill walked for 14 hours. And the end, I struggled to get up stairs.

It's like that feeling, but from the moment you wake up in the morning and when you try and do anything. It's that 'hitting the wall' feeling when you do a really long run. You wake up, stand up, and hit the wall. That's all you've got for the day.

There are a few theories e.g. viral persistence, immune dysregulation, chronic inflammation, micro vascular damage, endothelial dysfunction, mitochondrial dysfunction.

I have only read a few more responses, but appreciate the replies and will read the rest in chunks.

It’s not really a thread on if LC exists or how serious it can be (or I didn’t mean it to, not being thread police). Long covid exists - millions have it and there are lots of studies showing things like microclots, loss of grey matter etc. I’m just not going to debate that anymore than I would debate whether cancer exists (also used to be psychologocised) or whether birds fly. I was referring to not taking long covid into account by those making public health decisions and those referring to outcomes. I agree Germany talks about long covid in a rational way.

PP said was unaware children got it - not PP’s fault, but a failure of public health and a collective desire by much of the press and politicians to pretend it’s not happening. Children with long covid were one of the focuses of the covid inquiry last week - where is the reporting? There will (rightly so) be reporting on some children who were affected by lockdown when that is raised - why not children affected by long covid or those in vulnerable families too though?

Completely agree OP. Where is the reporting about the thousands of children with long Covid? And the results of the enquiry last week. Can’t believe people think that children aren’t affected!

I’ve seen on here and on other threads. People think you need a severe case of Covid to get LC. This is not true. They think you need to be immuno-compromised or unvaccinated or that it was only a problem with the first wave.

There needs to be some education as this is not going away and is going to be a huge problem..

The reason I ask about the symptoms of LC is that I can't figure out whether my own daughter might have it. She is 15 and used to be extremely active, very sporty and generally super bubbly and energetic. She then had a very mild form of Covid (she tested positive at school and then confirmed by positive PCR test) but she had almost no symptoms except for a mild headache. However, since then she has had a very weird episode of 1 week when she suffered from extreme vertigo (couldn't get up without everything spinning) and complete loss of energy where she could hardly get out of bed and had no energy to do anything without having to sit/lie down. We even went to hospital and they kept her in overnight, but couldn't really figure out a cause. Two rounds of antibiotics seemed to have cured the worst of those symptoms. She's still not fully back to how she was before though - she has a lot less energy and we tested for iron deficiency (and did general bloods) but all came out clear. It's just very odd.

@XelaM some people get heart or lung issues (pots , afib, asthma etc) and tons of fatigue, others like me got mainly neuro issues, weird heady spacey feeling, pins and needles in feet, buzzing in hands or leg ( like someone had put a switched on battery in there) , very sore eyes, burning pains in face, muscle spasms in legs, migraines etc when had none before ( I was never a headache sufferer at all)

Ugh eye burning.

Mine did this a swelled up. Still haven’t fully gone down a year later.

I think if they’ve done all the usual
blood tests to rule out any deficiencies such as iron. Run tests for glandular fever etc then I think it’s worth a consideration. It’s basically post viral
fatigue (but seemingly with more random symptoms and I know vertigo can be one of them).

It can take months or in some cases years to clear. Hopefully it will be a quicker resolution for your DD. Rest and pacing activities is the current advice.

@ArseInTheCoOpWindow it’s one of my issues that never really went away - still get sore dry eyes a lot

@ArseInTheCoOpWindow I do remember you were really struggling on posts from when I was having all my issues!! So Sorry you are still struggling xx