Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@TiddleTaddleTat Hi, good news about your referral and yes that's right.

First an OT phoned to do an assessment. Then a physiotherapist came visited my house several times to offer help with breathing problems and mobility.

This is where it got slightly confusing. My (our) breathing issues are don't appear to be related to physical damage or exertion.

Anyway, due to the debilitating fatigue, strange heart and weird blood pressure issues, they ordered more hospital tests, referred me to CFS, dysfunctional breathing therapy, and psychotherapy.

They were terrific and offered some fab advice but I was discharged because their care - i think - is more suited to people with physical damage to their lungs etc.

it was also super fast, I think the OT called and PT visited within 48 hrs of the referral.

Good luck

Thank you all for your ongoing support.
Symptoms don't get any easier.
Great to know people are there for you.

@MillStone that's brilliant, hopefully I will get some of that... I have been trying to find specialist therapists but can't afford it and struggling to find the right person so would be so grateful if something comes out of this.
I imagined they've been inundated though... possibly why there's been no official announcement to my GP and they found out through word of mouth...

@TiddleTaddleTat great that you've been referred, and really hope it's useful for you. It's prompted me to ask my GP again if there's anything near me yet.

On a completely different random note, my fingertips are permanently wrinkled... anyone else get this??

That sounds like an amazing service Millstone - you've been lucky enough to have good medical care throughout this.
@TiddleTaddleTat, please can you let me know which clinic you've been referred to as i think it may be in South London? I've just had a very dismissive call from a GP at our practice saying no, there's nothing else we can do for you now and you're well enough to go back to work.

@Lightsabre I'm in Sheffield.

@TiddleTaddleTat so am I !

@MillStone oh wow really? Gah my GP should have referred me ages ago!! The news just isn't filtering through it seems...

@TiddleTaddleTat yeah sorry that’s a shame because I think it’s been set up a while here.

Hope they get in touch soon, they were so nice.

Another Sheffielder here! Had my first appointment at the COVID recovery clinical week, many blood tests and a chest spray, ecg yesterday. I go back in Oct for the results.

I had to say it took til the beginning of August for my gp to spring into action.

You lucky Sheffield people!

@Lightsabre sorry that’s a really rubbish attitude from your GP. When you return to work is it full time or a phased return?

Oh wow all you Sheffielders! My GP's just got back in touch - nothing at all here as yet but he promises I'll be the first to know! I'm in the South East.

@fedupofbed that's really poor. I'd assumed that Sheffield was quick off the mark because it was one of the places hardest hit but the SE was too. I can understand that it is less of a priority in, say, Cornwall.

Ooh surprise early result there @AndsLee good news all over!
I have been really wheezy this week and feeling rougher each day. Lost my voice last night. Still having toilet troubles.

I'm guessing the teaching and research hospitals in the cities are a bit more proactive? I'm shocked that you can't get anything in London though @Lightsabre - I'm sorry your GP is so unhelpful. Shall we all move to Sheffield 😁?

@fedupofbed I'm south east too. Took me until July to get a blood test and chest xray. @AndsLee I had the same thing a few months ago. I had burning skin on my side and developed a spot like chicken pox. Thought I was getting shingles but nothing else developed.

@LetsBeSensible healing vibes

@Kitcat122 That gives my theory kudos then. Weird huh? I'm glad it went away though. Mine is on the back of my hands, so I can only assume the constant washing isn't helping.

@fedupofbed oh yes do! We have the most trees and the Peak District 🥳

When we're all better (which we WILL be at some point) we can all meet up for a hike in the Peak District! In the meantime, wish me a happy 6 month Covid anniversary today, whoop. I'm celebrating with a visit to the chiropractor and I've ordered a rather plush Egyptian cotton bed sheet to replace the one I'm currently using which has a hole in it from too much bed time! Small pleasures 😊.

Hi all,
So I’m trying to see a pattern, had a worse 6 odd days ovulation and a bit after (as ovulation doesn’t last 6 days surely?!) then I started to feel bit better..still never without anything wrong each day, but not AS ill as ovulation time.
My sister, niece & nephew arrived on Thursday night and I drove a fair bit picking them up and dropping them off at their hotel (parents arrive tonight and stay with us)
Yesterday walked a bit and went for lunch with them..by 6 pm last night was on the sofa aching everywhere and diareah this morn. I get the possible aching as a post illness thing and possibly the driving/walking, but why the dodgy stomach again 🤷‍♀️
I’ve done nothing today and dp will do the airport run tomorrow.
Feeling quite overwhelmed mentally at the thought of a few days doing lots of ‘Stuff’ that being nice things such as the beach and meals out. It feels overwhelming and like I just need to ‘Get through it’ which is awful. I’m trying to think of it as one day at a time. It should calm when they leave Tuesday night, but then I still have my parents here for two weeks. I do love it but the thought of cooking and driving around is a bit 🙈I’m reluctant to spoil people’s fun by just wanting to have days in sat watching tv.

To all those people with clinics to assess this, how lucky is that! 🙏

I have quite sharp pain in my left calf again, had it on and off for months..but always worries me with the clot thing. Does anyone else have/had?

*Right calf..and it took about 5 minutes to remember the word ‘Clot’ then 🙄

@fedupofbed Ahh they sound lovely. I did similar a couple of weeks ago and got a really soft, lovely throw and cushion and string lights for my terrace and my treat is to just sit there at dusk with my throw over me, looking at the lights, like some kind of old lady! As you say, it’s the little things. I don’t go out as much so may aswell bring the comfort to me and make the space nice.

Hi again, am having a crash today. Was ok this morning, although tired/sleepy. But after lunch I went to rest and have barely been able to get up since. It feels like my previous relapses - sudden fatigue, feeling hot and cold. But I haven't been well since the previous relapse - I've just been ill ever since! Could it be that I hoovered the kids' bedrooms yesterday? Did that tip me over the edge? They hadn't been hoovered for about a month... And DH was working. Gahhhhh I'm so frustrated! Wishing everyone a good/better day tomorrow X

@seriouslynonames
Sorry your feeling so rough.
I agree it can be hard to judge when you are having relapse.
Symptoms can change so quickly.
Hope you feel better soon.
X