Long covid - rant/support/grieve thread

[GlimpsesOfMe]

Anyone with long covid, living with/ caring for someone with long covid fancy a support thread? A space to rant, grieve, support, share tips and research etc with others who can relate.

I'm so touched to read all of your accounts, and send you all strength. I'm not a LC sufferer, but mother to one. My DS (20) has had it now for over 2 years. Of course I'm not living in his skin, but he isn't nearly as bad as any of you sound. He's worked very hard to help his own recovery through diet (he's tried every diet under the sun now I think), supplements (given up on those - having spent any money he had on them, now thinks they're a scam), meditation (which has definitely helped, but he doesn't seem to do much any more), most recently he's into liver flushing. He's been living at home since he finished college (no quals to speak of) and worked part time a little last summer for 2-3 months, as a server, but it was very tiring and probably way too much of a physical job.
What I'm finding really difficult (and please don't flame me here) is coping with his mess, lack of help on even small things. I'm not talking about huge things, just cleaning up after himself consistently, helping with washing/drying up after a shared meal, maybe pushing a hoover round now and again or helping with cooking. Physically he's definitely capable of this - as I say, he's not nearly as unwell as he was 2 years ago and nothing like what several of you have described. If I say anything, he gets very defensive ("I do tidy up after myself") and I'm acutely aware that he's lost contact with most of his friends, doesn't go out, is isolated etc, so I'm pretty much his sole support. His siblings (one older, left home, one younger) are not very sympathetic. I really don't want to push him away, but I'm exhausted. I need to know that he's thinking about a different future from his current game playing.
I work full time to support his physical needs and dietary requirements, I'm also studying as am recently divorced and so need now to build up savings that I didn't think I'd need. We need to sell the house and move somewhere smaller. So there's a lot going on.

Can I raise a weary hand to you all. More than four years in, having a bad day today and am So very very fed up with this!

Hi, I've had LC for 2.5 years now. Also very bored of pacing, and having to think about energy levels all the time. It's ruined my life and I can't be the mum I want to be. I am still able to work part time but to be able to do that I have to sacrifice my social life, hobbies, time with my family, cooking, cleaning, DIY, gardening etc. My symptoms are more under control now and i crash less, but i think that's because i do less and live such a restricted life.
I do breathing exercises, pacing, resting, sleeping a lot (in bed by 8.30pm) and take beta blockers for the palpitations (which also helps the POTS). I feel grateful for what I have but very sad at what I've lost. No-one understands either. I still mask as I really don't want to get it again and tbh any small cold wipes me out and makes me crash.
Sending best wishes to everyone else in the same boat.

I’m currently bedbound again and feel winded.

Dodnt have the energy to draw the curtains or hang up dressing gown last night.

Meanwhile poor Dh is trying to cope with me and DD17 who’s in ASD burnout. As well as doing everything. Shes exhausted and l’m exhausted. He also has to cope with all her meltdowns as emotional energy drains me more than anything else.

Honestly my life is so crap atm. With no view of it improving.

Amista77, what the hell is "liver flushing"? My oldest DD is a qualified masseuse and aromatherapist, she has colonic irrigation and takes all these supplements, costing a fortune,liver de toxic, she drinks too much alcohol (liver function tests normal range,) I assured her (over 40 years nursing) your liver de toxes all the time. Most supplements are water soluble....you pee them out. She had one Covid Vax,has had Covid 4 times, last time couldn't even get upstairs. Got chatting to a lady the other day in shops, she said she didn't believe in Covid Vax, I kept my mouth very firmly shut! Rooting for you all💗

I feel grateful for what I have but very sad at what I've lost. @SavetheNHS this resonates with me. I walk past photos on the stairs of holidays and can’t believe that was ever possible.

@ArseInTheCoOpWindow sorry your dd is struggling so much. My dd is on asd referral pathway and doing GCSEs. Like your dh, mine is being amazing, but I totally relate to how it’s emotional factors that trigger crashes more than anything else.

@Norugratsatall four years 😕 I’m so sorry. I hope today is better than yesterday.

It’s my birthday today. I have messages on my phone which makes me happy but I’m too anxious to read them cause they just remind me of how much I’ve failed every one. All the messages and cards I haven’t sent. I’m having coffee and then going to get out of bed for when dd back from exam in an hour. Not too much pain today.

@Nannyfannybanny It's some ayurvedic thing I think. I don't remember how he heard about it - he's been down so many rabbit holes, thankfully climbed back out of some of the more scary ones. Once a month at new moon, he drinks litres and litres of apple juice over a week, then does something with grapefruit juice, olive oil and Epsom salts. Thankfully he only did the colonic irrigation a couple of times before accepting that it was a bad idea. He says he's removing stones from his liver, that he sees them. Understandably, he's grasped at so many straws, but it's heartbreaking to see him putting all his faith in the next miracle cure, only for it not to work. Also by 'work', he means 'return to how he was before', and the tragic thing which I don't have the heart to say out loud to him, that he may never go back to the way he was before.
@LawrieForShepherdsBoy Happy Birthday!!!! I hope you can enjoy your messages. The thing I say so often to DS is to be kind to himself - not to berate himself for not achieving the things he feels he 'should' or for having a relapse because he ate something that worsens the symptoms. Be kind to yourself - you are doing amazing in keeping going each day.

Thanks @Amista77 . I’m ashamed to say that I fell apart today. A money issue then worried calls from my dad and dementia organisation about my mum who had had a bad day. So back in bed and in pain. I did reply to my messages though. And planning a nice evening tomo night making Lego set with my family. Just really, really really want to be okay for that 🤞

I'm so sorry for all of you having a bad time. I'm so blessed in not having pain or breathlessness any more. Having said that, I had such bad chest pain a few days ago, I nearly called 111. Has anyone else had this?

@LawrieForShepherdsBoy I'm so sorry to hear that. I can only imagine how the stress and worry affects you. I hope you had a wonderful time building Lego.

@Snippysocks My DS has random pain similar to what you describe every now and again. It can be in his chest, or different parts of his abdomen. He's had his heart investigated by cardiologists who've found 'nothing wrong' and have dismissed him from their clinic - incredibly demoralising. There are only 2 ways of interpreting it: a) you're making it up; or b) we have no idea what's wrong, and there's nothing we can do.
I had a long chat with him yesterday; he's not doing well psychologically and admitted that he's not able/ready to accept that his capacity may never return to 'normal', though this is the first time he's actually been able to voice that to me. I feel he needs therapy, but have no funds to pay for it. Really don't know what to do - it's really worrying.

@Amista77 I am so sorry that your son is going through this. It's really frustrating and sad - particularly if you are young and have always been active. The psychological effect is hard - particularly if you look well. Could his doctor referr him to the Long Covid clinic and also the support group which is linked to the local ME group? I've found both of these to be helpful.

Does anyone find it comes and goes.

Last 6 or 7 weeks I’ve been virtually bedbound.

Woke up yesterday and felt much better🤷🏼‍♀️l don’t trust it at all

I've had times when it seems to have more or less gone, then it comes back. Recently, I thought I'd got over it so I did 2 short walks and a 5 minute exercise video plus moving some small cut up branches. A couple of days later, I had a crash. A week on, I'm better than I was, but not doing a whole lot of anything. I'm assuming that by the end of the week, things will get better ....

@ArseInTheCoOpWindow did you know about the boom/bust thing? I do get that it’s a bit unreliable and unpredictable even with pacing, but if you consistently do say half of what you think you can, after a while your levels should stabilise so you end up with less time in bed. It’s a hateful illness.

Thank you @Snippysocks I will try. He was dismissed from the long covid clinic ages ago, as he had a tendency to tell them how well he was doing. A desire to please. Since then, his mistrust in the NHS and allopathic medicine in general has fallen through the floor. It took me a lot of persuading to get him to go to the cardiology clinic, and then they discharged him so that's done nothing at all to help. I'll see if he can get into some kind of ME clinic though - that might help.
That's a useful tip @FlexIt, thank you

I’ve learnt about it now! Through bitter experience.

I wasn’t even over exerting though. Just went further and further downhill until l was too weak to do anything. Started feeling bit better yesterday. 10 weeks in bed😕

@ArseInTheCoOpWindow you have to take it really really slowly now. Never do more than half what you think you could manage every day

The PEM thing messes your head up. Because I could function on days I really had to, would even feel energy on those days, I just thought it was laziness/mental health/my body has-lighting me when I completely crashed on other days.

Also, cause the PEM doesn’t come that evening, or sometimes the following day, but the day after. That makes you feel like it’s just all in your head. It feels like you are probably actually dying or you are making it all up.

Also, the exertion for me that has the biggest impact is emotional. It’s taken me so long to spot the patterns.

Exactly @LawrieForShepherdsBoy
It's incredibly frustrating and messes with your head. Joining a Long Covid video support group was so helpful for me as I kept thinking I was persuading myself I was ill.

The word grief in the OP’s title really resonates with me. I walk past old family photos and it just seems unbelievable that I used to be a functioning person.

Yesterday, my dsis sent me a google this time c years ago picture of me completing a marathon.

And we haven’t been on holiday since 2021 - I’m always the driving force in organising and it just all seems too difficult. I got Covid in jan 2022, my dd was having medical treatment that summer but ds and I had a kayaking holiday booked that I had to cancel.

The next year, we postponed a short European break away in Easter, but come summer still couldn’t manage it.

And last year, friends lent us their uk holiday home for a week. But again, it just felt too much, so cancelled.

I’ve asked dh to take kids away this summer without me. He will need persuading as I know he doesn’t think it’s right to have a family holiday without me, but our kids are growing fast and I don’t want them to miss out.

@LawrieForShepherdsBoy are you ready to rethink what a holiday looks like for you and your family? Because, and I know this sounds harsh, if you can’t accept an alternative you could be forced to accept no holidays at all, for many years to come.
If you can reframe in your mind what a holiday is, you’ll be able to think of something that you can manage and which whole family enjoys.
I really know how this feels, like you’ve accepted it when you don’t want to, but what’s the alternative? 😥

@LawrieForShepherdsBoy My DS feels like this too, that he can't believe he used to function 'normally' - get up in the morning and go for a run; work all day and then spend 2 hours in the gym... it seems to him that person was an illusion, or a dream.
That said, and I know everyone is different, he actually really benefits from holidays. Of course, he doesn't have to do any of the planning, booking, organising, etc, so a lot of that stress is taken away. But for him, being in nature and ideally somewhere sunny, a break from the 4 walls of his room/the house, it all boosts his energy and his spirit. I think what @Flexit says is worth considering: is there something you could imagine working for you? It might be going somewhere familiar, which (I find) can be less stressful.

@LawrieForShepherdsBoy

I get the holidays thing.

I’m often too unwell to attend hospital appointments. I cannot imagine going on a trip anywhere.