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.

Often travelling is very draining, if this is you could you choose more local or shorter journey.
If you have younger kids can you choose a location with enough onsite facilities that you don’t need to tire yourself leaving the site.
Planning, maintenance if you have a partner they must be aware of your struggles. Can you delegate packing? Make list and hand it over.
Food, order ready meals, choose somewhere near takeaways or cafe?
It is possible if you start planning soon enough in advance and break everything down into small steps.

With the holiday thing, you don’t need to live the experience, you just need to feel not too bad compared with being at home. But afterwards we feel benefit from how our family enjoyed themselves.

Hello lovelies, I just wanted to share a tip with you for something that has really helped me over the past week - Qi Gong.
There's a lovely Chinese lady on YouTube who does a 12 min vid about clearing blockages (or something like that). It's basically tapping all over the body to get things flowing. Well! It has made a huge difference to my energy levels. I still have to have little rests now and then throughout the day but I feel so much better and I'm getting so much more done. Lots of videos out there but her ones have worked best for me. She calls them Qi Gong yoga. .Best wishes xx

Yes, DS has done this too! I suggested yesterday that he try it again. I'll ask him for the site he uses. I think his involved (fairly gentle) movement, so not for really bad days.

Thanks @Pocketfullofdogtreats . Is it ? I’ll give it a go. I find using light finger pressure on my my arms really relaxing when I’m lying down - I can find spots that give me a bit of release.

I use Hypnosis SOS podcasts. They are about 15 minute long. They aren’t LC specific, but there are lots on recovery and rest which are the ones I use.

Ive become really aware of just trying to keep calm and stop flipping into hyper-vigilance state.

Tough few days here. Lots of sleeping and then boredom when I’m awake but can’t do anything. Did have a good day on Saturday, which was nice.

Ive found listening to audiobooks that I’ve already read really useful. Because I’ve already read them, I know they’re good, and I don’t need to concentrate too much as I half remember what’s going on. Keeps boredom away a bit.

And thanks to all the posters who responded to my post about holidays. It gave me a lot to think about and I had a good chat with dh about it.

I’d love to do those vids. I’m too weak to stand for any length of time though😟

That's the woman! Thank you. But the vid I've been using is one about clearing blockages in the system and getting energy in the morning.

Just read this, interesting and scary

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid?

Hope it's useful. Makes me annoyed when people try to say covid is over and are dismissive of those with ongoing problems. This article says Long Covid has millions of research articles. Good luck everyone.

Hi, I was wondering if anyone/their partner with long covid has sleep apnoea symptoms? I'm certain my DP (3.5 years long covid) has sleep apnoea and it's causing some of his worst symptoms. I am trying to persuade him to mention it at his long covid clinic on Wednesday.

I'm so sorry you're struggling. It sounds really tough for you.

Have you heard of Mast Cell Activation syndrome? Take a look at MCAS. Recent studies have shown a link with Long Covid. You don't have to have all the symptoms.. Just at least 2 different body systems at once. Www.mastcellaction.org

@Amista77

I’m just shitting myself.

Dd tested positive last night. 5 minutes after she’d been sat on my bed talking to me. Shes had a cold for ages and tested last week. We just thought it was cold symptoms carrying on.

Im in bed because I’m generally too exhausted to get out of it….

Now I’m scared to leave the bedroom. Dh has gone to sleep in a different room. Ordered loads of wipes as she’s got bathroom priority ( she’s ASd and can’t stand not feeling clean)

Is go to someone else’s house…. but I’m too unwell to drive any distance.

What a bloody circus. Tested negative this morning🤞🏻

Thanks @Mummybearsthename - I hadn't, but I suspect my DS has. He's done so much research - he actually doesn't call what he has LC any more. I'll ask him.
He's recently got back into fasting and is feeling so much better again. Really helped by the summer weather. He's very positive, doing things around the house (unasked) and back to his driving lessons. He fasts around 24 hours or so - trying to build it up, but I'm trying to keep him on an even keel by reminding him not to overdo it. It seems to help - physiological or psychosomatic, I don't care! At least he has some optimism back.

@SaltBlossom I think he should definitely mention it. DS has found that anything that interferes with his sleep severely affects his symptoms. I'm sure sleep apnoea would be really debilitating.
I have been in the same place, having to persuade DS to mention stuff that he's either forgotten about or thinks isn't relevant. Good luck

@ArseInTheCoOpWindow Oh, so sorry to hear this. Really hope you don't get it. On the plus side, if she's had a cold for a while and you haven't caught it, she may be past the most infectious stage anyway? Could anyone come to pick you up so you can stay with them for a few days?
Fingers crossed for you (emojis never work for me)

This sounds great, so good that he is managing to do things he couldn't!

It's helpful piecing the puzzle together to find out what is causing symptoms

Some Long Covid research from the IiME conference
ME Research UK reports on Invest in ME Research Conference 2024

Disappointingly says nothing new at all.

I’m on Reddit with LC.

Lot of excitement about a very recent paper about the brain/muscle axis.

An inflamed brain leads to muscle tiredness/weakness on a certain pathway in certain people.

This is a pathway that is treated in several autoimmune disease with biological drugs. Theres one specific one. Rituximub? Anyway, they are hopeful it will treat LC/ME.

So I'm in education only working pt 3 days a week. I did an extra day last week and have spent the weekend,yesterday and today feeling totally wrecked.

I'm just so down I guess I can't see an end and feel so upset and angry and oh so Lamy emotions. I just want to playbwith my kids and do things without having to think of the repercussions
Sorry I'm venting and I kjwo there's nothing people can do but I'm finding it so hard at the moment. I don't know why, I can't keep the smile on my face

I'm so sorry about your exhaustion, @Ewock . My DS had similar recently - some of his mates were back from uni so he hung out with them, went out a bit (no alcohol) but a few later nights, some swimming - and of course a couple of days later, the exhaustion hit and took a week+ to recover. And of course 'recover' means back to the way he's been managing to maintain, rather than back to anything like his former self. Actually I think it may be harder when you feel you've reached a point of 'managing' and then you do soemthing a little extra and wham! you're reminded of everything.
I hope you manage to get some good sleep and feel a little bit more balanced today. You're doing brilliantly to be at work and be a parent and deal with this soul-sapping condition.

I've sort of accepted that the fatigue has come to stay for me. I'm SO much better than I was, but helping at a small event meant feeling rough the next day. I can't sing loudly any more at church as I can feel my breathing being affected and it also makes me tired. I'm in awe of parents and people in work who try so hard to carry on with life and then have to deal with the after effects. You are all amazing.

Currently in a low energy state after a big day out on Friday.

can I ask - should I get a covid vaccination this autumn? Is it even avail? Does anyone have advice on that? I’m over 50 but not labelled as high risk category (other than long covid…)

My DS is convinced his LC was triggered by the vaccine. He's done a lot of reading about this - I don't know how reliable it is. I'll ask him if he can suggest any links.

I've got an autoimmune condition and caught covid before being called for the 1st vaccination and Long Covid hit before I eventually got it. My LC hit before the 1st vaccination....