The long covid sink hole

[Cortrach]

My brother has long covid. He tells me about it repeatedly, in great detail. About consultant appointments he has arranged for himself up and down the country, about how he is getting "support" from the "long covid community" which is as far as I can tell not a community at all but rather a collection of disparate individuals staring at the internet. He has been having long covid investigations for close to six years now. In all that time, no one has found any physical cause for his many varied symptoms as identified by him. Previous to him developing long covid he had atypical asthma for several years. Atypical asthma seems to me to be similar to long covid in that having it entailed him visiting lots of specialists who couldn't find anything wrong with him other than breathing in an anxious way.

I feel like I've lost him, and actually I need him because our parents are (genuinely) unwell with age related problems. He won't talk to me on the phone about it because he says it's too tiring for his long covid. I can't question the long covid because apparently he is surrounded by people who don't believe him and they are toxic.

I guess I just write him off, but I feel sad. He's my brother. And he's only 50! It's a waste of a life.

Not to mention that the UK is miles behind on LC because it is still treating it all as some post viral thing and it isn’t really interested.

The problem here OP is you brother has two ‘invisible illnesses’. It is possible he could be faking those but it’s also possible he is genuinely ill and it’s quite difficult to be able to tell which of those it is. Not showing up on tests doesn’t actually rule being ill out.

You sound absolutely horrible.

This is exactly how I was treated when I had ME 20 years ago.

My alarm went off at 3.45am this morning for the job I do that I pay 45% tax on - I still have post viral syndrome though 🤷‍♀️

I feel fortunate that I can still work but all the other things I enjoy , running, tennis, I can’t do at the moment - it has knocked me for six and it is nearly a year of this. I’m far from a malingerer - which is what you’re implying- and I hate that (along with other symptoms that my GP has prescribed real and not imagined medications for) I am so damn tired.

Doesn’t she just. Poor brother with family like that.

Isn't the latest thinking telling us that long Covid is mostly a psychological disorder, similar to fibromyalgia? Symptoms are real, yes, but the cause is not physical.

You’ve a 10% chance of getting long covid with every SARS COV2 infection you get. At best a previous infection doesn’t protect you from long COVID. If you aren’t taking any precautions against getting covid I wouldn’t be too smug yet.

It doesn’t really discriminate. It’s quite happy to affect high rate tax payers, low rate tax payers, those that get up at 6.45am, those that don’t get up until midday, athletes and those that do no exercise at all, workers and non-workers. And if you are a woman I really would be careful, because that does seem to be one population it is more prevalent in.

Yes, this. Be really, really grateful that you don't know what it's like.

No, that’s really not true. There are plenty of studies showing physical abnormalities in people with LC and ME.

Perhaps I should tell that to the surgeon who will be operating on my ears next month for a problem which the hospital has confirmed was caused by Covid. Or maybe I should get myself some counselling to stop myself falling over when I lose my balance and to stop the horrendous autophony which is impacting significantly on me being able to work effectively. 🙄🙄🙄

It’s not pyschological.

Its neurological. It creates symptoms due to changes in the brain. These are not pyschological.

Its vascular!!!!!

Covid gave me brain damage. And I’m grateful. Not for the damage, but that despite me not being an obvious priority at the leading Covid hospital for my province (and one of leading Covid hospitals in Lombardia) the neurologist shoved me in a CAT scan, rather than just send me home cos my breathing was fine.

Without that scan I would have been shunted into the don’t know what’s wrong with her long covid group. And I’m pretty sure it would have been relegated to “all in her head” (which it was, just … as holes in my brain rather than health anxiety). Knowing me I would have retreated into the online world of long covid, and it would have made everything worse. I’m pretty susceptible to the nocebo effect.

DS had nothing better to do in lockdown, and we live in the rice fields and the Ticino Forest, so he rehabbed me relentlessly. He was determined to get me back on my feet and able to walk in a straight line.

While some people may be experiencing somatic illness, others will have underlying damage that hasn’t been diagnosed. In both cases work on physical recovery with support will probably be less unhelpful than being online rabbit holes, and may help with turning the corner. Somatic illness is just a physically “real” as holes in your brain, in terms of the right treatment being required.

I was ill for a month with a health anxious DH (who says it’s his greatest regret) who decided it was just me being anxious and there was nothing real wrong with me. Even if it had been somatic, I seriously needed help. And those four weeks were intensely lonely and isolating.

I consider myself one of the very, very lucky ones. I got the right test at (almost) the right time and had a supportive rehabber (albeit a bit David Goggins-like in his approach) in DS.

DS had no training, just the internet, time and an emotional investment in getting me back to myself as much as humanly possible. Now we are so long past the pandemic he wouldn’t have the time anymore. And I think I might have been written off by medics, friends & family alike.

I feel for you. Because I don’t think being the family member is much easier than being the one who is debilitated, one way or another. It’s a complicated area, requiring a lot of time and energy to resolve for the better.

@RafaistheKingofClayyes and I would also add long covid/me favours certain gene expressions and certainly ME affects type A personalities to a greater degree so OP has a even more stacked against her.

I think you are confusing neurological and psychological

@RafaistheKingofClay it doesn't seem to happen to working class builders or joiners, does it?

Andy by your workings, lets say an average of 3 infections per person, allow for some duplications, 20% of the population has Long COVID? C. 14 million people? I call BS.

Yes all the people I know with long COVID were highly driven impressive people
The disconnect between what their body will let them do and who they are is huge

Crazy how such a horrible thread has actually been so uplifting.

@BlooomUnleashedhow interesting, I have seen great improvements from using hyperbaric oxygen and your DS sounds amazing.

My cousin has formally diagnosed Long Covid. She has only gone back to work full time in the last year - and she was one of the first to get Covid in 2020. Her oxygen levels never go above 93% due to lung damage. If it drops below 91% she has to go to hospital and go on oxygen. Her hair fell out in handfuls, and is still thin. She was doubly incontinent for well over a year. Her energy levels are only now close to what they were before, but she still has days when she is completely exhausted. She thinks this is as good as it’s going to get.

If it's neurological then why can't it be treated successfully?

dear god where to start.

having had ME/chronic fatigue for 20 years (long covid is basically the same) i can assure you that everything you've said has been said to me.

People dont believe that others could be fine one minute and can barely leave the house the next. Surely the medical profession would fix such a dreadful ailment? And surely tests would show reasons for it and issues would be present and obvious in bloods or scans? if there is no evidence the person must be deranged or lying….

WRONG

This is a debilitating illness. It’s not in the head. They can prove it exists because the mitochondria in the cells is different in sufferers. But they don’t test that. They should. But that’s the NHS budget for you. Diagnosis is based on symptoms, revolving around if there is no obvious reason then it’s ME. (presumably longcovid is the same with a history of covid in the past).

Why would your brother lie to you? It’s not like he’s lying to you as youre a benefits advisor and he’s trying to get free money or something! He's telling the truth.

He's exhausted. Frustrated beyond belief that nobody is helping him. That loved ones think hes lying. That nobody will listen to him. Then he comes across an online community of other exhausted frustrated worn down people who believe him and understand him. Hes not had that before. Suddenly he has hope. They have compassion and understanding Hes found his tribe.

These people aren't fuelling his symptoms. Those are sadly all too real. They are just agreeing with him as they have them too. They believe him.

Being with this group brings him people who care and don’t think he is a lazy bastard liar whose making this up to get out of his responsibilities. Thats you OP.

I can assure you that you do not want to trade places. It’s awful. You should apologise for your attitude. It sucks. Your betrayal is hurting him. Imagine it’s you. How would you feel? Your family call you a liar and think you should stay away from those who get understand you as somehow that will make you buck up and stop having symptoms. No it bloody won’t. You can’t get away from the symptoms. All you can do is rest and manage them as best you can.

At first i could only load three dishes in the dishwasher and i had to sit down. It was awful. My partner said since i was off sick i should do all the housework as he was out all day working and I should stop being lazy. How the hell could i do that! i could barely move.

Ultimate betrayal. I didn't want to be at home. i wanted to work. i was gasping for breath and my legs were like jelly. Loved ones clearly thought i was At It. Your brother will be the same.

Please believe him. He has no reason to lie. He is unwell. The nhs doesn't test for everything. if they did they would find evidence but they don’t. just like they don’t supply every medication for every illness. there just isn’t the budget.

if you want to help him pay for a course of acupuncture for him. it can do things western medicine cannot. it can really help wirh breathing. The fatigue however will take a long time. He will never be the same again. Especially as youve disbelieved and abandoned him and haven’t done any research to back up your opinions.

Poor guy. You ought to be ashamed of your lack of compassion but i will chalk it up to ignorance. Go read up on ME Chromic Fatigue. it’s the same thing with a different name. It’s real. It’s awful. Many are housebound or bedbound for decades. The forgotten ones. While their families go on as normal with their own lives……

@CassandraWebbthat was my cousin exactly. Full of energy, the first to volunteer to take on anything new. She was a nurse, but she’s had to take a desk job because nursing is too physically demanding.

I don’t know. But it is defined as a neurological disease. Not a psychological.

How do you bring a brain out of freeze with drugs? Can you? Then the brain changes to keep that response permanent. How do you treat that with drugs?

Are you implying that your brother is malingering?

He is.

I gave him life, and he saved the quality of mine.

He was so determined not to lose the mum he’d had that he was going to get me to “almost back to normal” even if he had to drag me there. And he’s so funny. I’d be veering off in a diagonal direction with legs of cotton wool, which is depressing when you are desperately trying walk in a straight line, but he had me breathless with laughter to the point where I didn’t notice the breathlessness from being knackered.

It was like being rehabbed for 18 months by David Goggins and Chris Rock’s love child. 🤣