Long covid awareness day - what things do you miss the most?

[Periornot]

It's long covid awareness day tomorrow. If you have long covid, what are some of the things you miss the most? For me it's things like working, financial security, full days out with the kids, not putting so much pressure on my partner, exercise, cleaner/tidier house, not living in limbo, clear head, energy, hearing properly, socialising, knowing I can make plans. It's like an energy cost of living crisis (the other type of energy!) - everything takes so much more energy and the bare basics are more than you have.

My daughter has Long Covid. She misses going for walks listening to her music. She misses watching television, can't cope with noise and the lights etc. I miss having a happy daughter 😔. It's about time some helpful research was undertaken. What is the point of covid clinics when there has been little to no research to find ways to help people suffering?

Being able to think in the evening! After 6 my brain is mush!

I am lucky that I can work and do most things, but a long day / event leaves me wiped out for days. Any cold totally floors me, I miss having any resilience.

Carer wise I was in a good place to progress but now it doesn’t seem feasible, which is incredibly frustrating!

@Noonesperfect it must be v hard seeing your daughter like this. There has been quite a lot of research about how covid affects different parts of the body, but treatment is another story. Hope she starts to improve soon.

@OhBeAFineGuyKissMe do your work know? I sympathise. It's relentless. Fingers crossed you recover.

Thank you 🙏, yes it is very difficult to feel so helpless. She gets very upset and feels like nobody really cares about those with Long Covid (family apart of course), but the government don't even mention it. I hope you improve as well

It does feel like nobody is bothered. I did find it strange hearing about the getting sick back to work yesterday...all the while whilst government reluctance to help live with covid in a more realistic way will lead to so many more long term sick. I don't know how old your DD is, but longcovidkids on Twitter may be able to help.

I misssimply feeling well. It's like having a permanent hangover and just when you think 'oh the headaches gone' along come pins and needles or ear pressure .

I miss that too. Like the old berocca advert "you but on a really good day", but the opposite. I do have some days where I get 'glimpses' of me for a while and I treasure those - feeling sharp / basic energy levels. Today I cried as I knew I didn't have energy to walk further down the road to a different postbox with a later collection time! I'm struggling to accept it, but trying to. How long has it been for you?

The endless decision making - abortive energy on that postbox trip - I could have used that on something else. A bit like someone really short of cash paying to get on a bus to the wrong place.

My DS has Long Covid (nearly 2.5 years). He's missed the last 10 days of school (including his A level mocks) because the fatigue has got too much for him. His LC clinic OT wants him to see his GP but as yet I haven't been able to get him an appointment. I'm left with phoning at 8am every day until he gets to see someone.

At the moment it feels like there's no light at the end of the tunnel any more. There's no clinical trials in our area and no real treatment offered other than physio & pacing. I really feel for everyone who's going through this.

@Periornot yes- those brief glimpses of yourself, the hope that it's coming back...
So what do I miss?
Not hurting. Something always hurts. Currently it is feet, but it has been legs or head.
My toenails- they keep falling off.
I feel locked inside my own body, I can't escape the shell I'm in.
I'd like my voice back. It vanished with covid and has never really come back. Difficult when you rely on it for your living.
Sorry- a bit of a moan. I keep feeling that I should be better by now, why am I not?

@Periornot 6 months for me- but mainly neurological- the thing that's complicated it is doctor put me on beta blockers for whopping headaches and statins for high cholesterol- so I'm not sure now if some of my neurological crap is LC or if an element of it is side effects of drugs

What bloody annoys me ladies is how common this is- I'm on a couple of long covid forums- with some it's LC, with others it's post vaccine issues- some relatively mild but others really debilitating - I feel like it's being totally brushed under the carpet and like they don't want people to know that there is so much unwell ness out there as a result of covid

I miss having warm hands and feet. I miss being able to take a full breath. Having shoulders and ankles that don't hurt. Being able to think clearly and have a conversation in the evenings. I miss my energy levels and being able to exercise/move quickly. All of these things seem minor but they add up to me not feeling like myself anymore and I've had to get used to a new normal while everyone else moved on (3 years).

@Runningshorts I've had dodgy shoulders and back of neck too- I'm waiting on an mri as not sure if part of my long covid or arthritis has crept up on me