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.

Mum to a LC teen here. I really thought that there was no end in sight at times in the past but he's very getting there slowly. Things that worked for DS...

> Low histamine diet
> YourgutPlus+ & Phyto-V every day for a year
> Vagus nerve breathing exercises
> Daily physio exercises
> Lots of rest. Luckily his school were very accommodating in letting him just go in for A level lessons and not having to be in the whole day.

Pre Covid he would do 1-2 hours sport every day. Now there's none of that but he can manage day to day life and has been able to work since he left school last year.

You're all amazing and some.good tips thanks so much.
I think one of the hardest things is that it is invisible and I get fed up of saying I'm tired 😫
Good luck to everyone, we will get through it x

I've only just spotted this thread as have avoided reading about long COVID as I keep hoping it's just going to go away. But I'm 11 months in now and can relate to so much of what you have all been saying. I have got to the point where I have been managing my 3 days a week job just about. The odd extra day which we cover between us as a team tips me over the edge so I've had to stop trying. I felt in spring I was making progress and was at the best I've been by early summer. But really struggling since and can really relate to poster who says it's the emotional draining that's the primary problem.

Since DS1 came back from uni with some friend/accommodation worries, getting a level results for ds2 and 3, prepping ds2 for uni, dealing with interviews for DS3 (very very nervous and still no job) I've battled on and on and now back in bed. Need to take ds2 on Saturday and desperately hoping I can push just to do this for him. I spend my life with a mask on for the kids trying to be there for them as I want to be available when they need me. DH has been fine but he hates it when I'm ill so I try and be as normal as possible and last night he was really down as I have had to admit defeat again. It's aching, shivering, gastric problems and fatigue again. Still lying in bed today and can tell from the state of my neck and shoulders I won't be able to lift my arms up this morning. I just want it all to go away. GP has given up because I'm just about managing apparently. I'm so miserable. But just feel if I could have a month on my own with no one else's emotional worries, when I could just sleep and eat when I need to, I might give myself a chance. But with ds4 as well who is yr 6 that's really not an option. So I plod on. So unhappy and defeated by it all.

And so hard to keep in touch with people. I'm getting left out of things now and am lonely, and some friends I can tell just don't get it at all. I get the 'oh I get tired too'. I just don't talk about it any more when I see people and just let them assume I'm ok. It's just not worth the bother. But my world has shrunk so small.

@Dahlia444
I'm so sorry that you are struggling! I'm another long hauler, but thankfully my children are now adults and no longer living at home and my husband has seen so many of the 'crashes' that he knows when one is coming. It can be very isolating, though, and because I can do stuff, no one else sees the crash that comes after an activity and my friends probably think I'm over egging it! However, what has helped is the local Long Covid support group and also the ME group I've been referred to. It makes you realise that you are not alone and you can support each other. Do ask your doctor if there's a group in your area.

Right now I'm feeling rather sad. I just thank God that I was well enough to attend my daughter's wedding yesterday, but today I've gone into a crash and can hardly walk. It's quite depressing 😪 so if you have some encouraging things to say, now's the time, because it might make others feel more positive, too. ☺️

I'm really sorry, I've not read the whole thread as it's going to take all my energy to type this.

I just wondered if anyone has found anything that helped them get better?

I have been really unwell with long covid since March 2020. (Mainly fatigue, but other symptoms as well.)

I was working full time as a deputy head teacher, active, fit, regular exercise, lots of family commitments, busy social life and busy job,etc before covid. I am now completely housebound and have not really seen very much improvement in over 4 years.

Om so sorry, @Sunflowers
It's a runnosh condition. Are you part of a support group?

Hi I just wondered if anyone had tried Nicotine patches?

My lovely chimney cleaner LC sufferer had a consultation with a German Dr (practises over here) who recommended Vitamin B12 injections. He's now fit and well and back at work. Apparently, NHS guidelines recommend too low a dose. I've got an appointment with my GP and will ask for an Active B12 test but my chimney cleaner has to buy the syringes and phials of B12 on line from a site recommended by the German Doctor.

Thanks that's very interesting, particularly as the symptoms of B12 deficiency are pretty much identical to Long Covid...