Has anybody had or still got long Covid

[Yesnoormaybe]

Just been diagnosed with long covid. Does anybody have any idea on how long it lasts. How did you cope with it. Just feeling so fed up with feeling ill. TIA

Hope you get somewhere with it, I’m on what I suspect is a very long waiting list!

I had long COVID and it took about a year to recover. 20 months on from initially getting COVID I would say I'm 98% back to how I was before COVID. I do intensive exercise, I am back at work, and have been for ages, working in a reasonably physical job in a hospital, including night shifts, long days, had a second COVID infection this summer and had no long term effect from that.

There were many points where I thought I would never get my life back. It was a really terrifying time. My return to work took a long time, sometimes increasing by just 30 minutes from one week to the next, and I remember begging my partner to let me just quit my job, and entering radio contests as I was convinced the only way I'd ever get better was if I won enough money to not have to work for 2 years.

The most important things that helped were:
*Breathing exercises designed to regulate the autonomic nervous system. I got the long COVID programmes from Stasis, but unfortunately they are not available for free anymore.
*Rest and pacing all activity. Activity means things like showering, getting dressed, making yourself a cup of tea. Sitting watching TV while playing candy crush isn't rest. I did watch a lot of TV, but I interspersed that with periods lasting 10-30 minutes of deep rest. I used various soundscapes to time them. And if a wave of fatigue hit me I stop whatever I was doing, and lie down for at least 10 minutes with my eyes closed.
*Having patience. Of course I was able to increase my activity but it was so easy to start to feel better, then do too much, and that would be followed by a relapse. A lot of meditation helped with this (and with the rest thing). There are some good guided meditations on Insight Timer App for free.

Other people have had other experiences but I think these things are a good start for most people. I still think it was important to find some joy in life - I learned to crochet and did some good colouring in! I god a lot of support from the Facebook group 'Yoga and Meditation for Gentle Covid Recovery', or something. It is run by Suzy Bolt, who also had long Covid.

User287264
Me. I had covid in May. I have whats called Post Exercise (Exertion?) Malaise or PEM. If I do too much I feel dreadful. Light headed, faint, dizzy, tingly feet and fingers.
Problem is I never know what will be too much. Right now too much could be walking to the corner shop for milk or climbing the stairs 4 times in a day.
It's weird because if I'm just sitting down doing nothing I feel fine. But I know I'll feel rotten if I do anything.
I'm fed up too op, sorry this has happened to you too.*
*
Me too. I'm entering my fifth week of it and am thoroughly fed up. Off work for 3 weeks, then back as I thought I was on the mend only to find that I was exhausted after short tasks. Now GP has signed me off for a further month to recuperate. No entitlement to occupational sick pay either :(

@Mossstitch what kind of things do you think helped your improvement?
Mine’s been since Jan 2021 (pre vaccine) and no improvement, less than 25% of my previous self, really upsetting and frustrating.

@HairyKitty sheer bloody mindedness I think to be honest! I'm an occupational therapist in acute hospital setting so I understood about pacing strategies (which I think is the only 'treatment' being offered in long covid clinics along with breathing exercises as some of my colleagues run them). I'd also had experience of a family member with ME who basically just gave in to it and wallowed in it/seemed to enjoy the sick role which I was determined not to do. I did my own exercise programme after the initial few months to improve my breathing, just by walking a few metres more up a hill at the back of my house every 2-3 days. To be honest you naturally 'pace' yourself with household tasks from sheer necessity. Ten minute task, collapse and sit down for an hour, do the supermarket shop, in bed for a couple of hours ect. As the 12 month point approached I began to get bored (which shows how bad I felt previously as too rough to feel bored before that). At this point I decided to go back to bank shifts at the hospital initially two 6 hour sessions with a day off in between. (there's a desperate shortage of OTs so I can basically do what hours I want in my old trust). This led to quite severe symptoms/relapse mainly horrendous headaches, allergy symptoms plus exhaustion and I was still quite breathless. At the 8 week point I had decided that if it was as bad the next week I would give it up as was taking 3 days to recover by which time it was back to work again (I'm over 60 and already have NHS pension so had the luxury of being able to stay at home and be bored, I wasn't getting sick pay through all this as I was bank when I contracted it from a patient). Gradually I found that I could do more hours until a year later I was able to do 20-30 hours a week, my resting heart rate has finally gone back to near normal and most of my allergy symptoms have subsided. I still get very tired after a couple of days at work but that could just be an age thing, after 10 hours in bed I can usually get up and want to do something outside the home whereas for the first few months back to work I felt too ill to do anything for 2-3 days after. Don't give up, it's a lon road but you can beat this💐

I’m at the stage where a one hour visit to a local cafe give the massive crash the next day 😬. Work outside the home would be impossible.
I’m not sure how to more forwards as my safe envelope is so small that very small daily events/changes that are outside my control keep triggering crashes.
I’m never symptom free if you know what I mean.

I find that I can’t productively do pacing with slight increases as I can’t isolate eg the few minutes extra walking each day as the only variable I change. Other small things will be different and because my threshold is so low I’m not sure how to tackle a structured gradual increase (also have family member with m.e.).

@HairyKitty when I say gradual increases, i don't mean every day increases because as you say sometimes just getting through essentials in the day is too much. I would only do the extra bit of walking (talking 50 metres or so increase) if nothing much else to do that day. It is a bit trial and error and sometimes caused a crash and three day recovery time. I realise if your younger and have children that this is much more difficult to do. It is truly slow😢 at about 3-4 months after I had to go for a blood test, felt OK whilst out, had to walk quite a way to park at the hospital, this led to full on relapse with all symptoms for at least a week including sore throat, temperature, intense headaches, total exhaustion...... It is a truly weird virus 🤷 I don't know what your symptoms are but a lot of mine were inflammatory/allergy type, I found ibruphren worked better than paracetamol for this reason and a lot of people are taking antihistamines and find that helpful (not for me as even the non drowzy ones make me feel exhausted). May be worth a try🤔 all the best💐

See if you can sign up for the hope for long covid course. It's all online at your own pace. Very helpful for me.

And weirdly try an antihistamine

@ScottishBeth what are the breathing exercises you mention? I’m really interested as my doc thinks I have dysautonomia. Probably PoTS. Been waiting to see cardiology for 6 months for cardiac symptoms post covid.

I know one option that is prescribed is the powerbreathe device (strengthens diaphragm muscles so larger natural breath is taken).

@Judijudi I have 3 exercises, and I still use them from time to time now.

*Breathe in for 4 seconds, out for 6. Do this for 10 minutes.
*Box breathing. In 4s, hold 4s, out 4s, hold 4s. Do for 10 minutes. If you find 4s easy can do 5s or 6.
*Left nostril breathing. Use your hand to close your right nostril. Then in for 3s or 4s, and out for the same.

If you're able to get stasis, it'll be worth it, they have quite a detailed long COVID programme to follow. However if not, I would 10 minutes in the morning and 10 minutes at night. Maybe 10 !minutes at lunch time as well. Sometimes I use the left nostril breathing for just 3 minutes or so if I'm feeling I need some calming.

If you have dysautonomia these should help. All 3 of these exercises help bring your body into rest and repair. And even if they don't help, they can't hurt! I spent a fortune on supplements and things that ultimately did nothing at all -but breathing is free! I hope you feel better soon.

My DH caught covid in dec 21 and he is still suffering. We had a very active job and although he is definitely improving it has been really slow. He’s now back at work on reduced hours. It’s been, and still is, a long slog and has really affected his mental health and our family life.

Very old thread. Wondering how you are doing now those who posted. Did you improve?

I'm better than I was but still pretty incapacitated.

Rest, rest and more rest is really the only advice I could give.

It took over two years ( not helped by repeated bouts of Covid) but I'm mostly better now so there is hope. I'm still having to build up very slowly with exercise but have started couch to 5k again which would've been impossible even a year ago.

DP has Long COVID. He was first ill in March 2020 and has had further bouts of COVID ever since (we've given up counting but know the symptoms) he also still struggles to breathe and has constant fatigue. He has to pace himself and if he over exerts he pays for it afterwards. COVID has changed our lives forever and not for the better I'm afraid. I do hope you recover OP.

So sorry to hear @blackcherryconserve i hope in time he will heal. I’ve also had repeated bouts of it - got LC 10 months ago and had it twice more since November. I hate what it’s done to me and I’m missing out on DD. Thanks so much @Justploddingonandon you’ve really helped me saying that, as I’ve also had repeated bouts and am housebound. Also catching everything my DD brings back from nursery.

Sorry to hear some of you are still suffering.

I'm so sorry that so many of you are still suffering from Long Covid.
I caught a mild bout in January 2021. 2 weeks after, I went for a long fast walk with a friend, but had to call my husband to bring the car and drive me home. Since then, there's been a very short respite from it, then I crashed again. Right now, I'm better than I was, but can't walk more than 20 minutes before getting breathless. I have good days and days when I have to go to bed in the afternoon. I'm retired but wouldn't be able to go back to work if I was still teaching. I've had respiratory therapy but nothing much has helped. The Long Covid support group has been a lifeline for me as people on the videos understand that you can look normal but are struggling. I never thought I'd be a candidate for LC as I was healthy, exercised and have a great diet (except for chocolate!)

I'm mostly better too - nearly two years in. It has been a long haul, but posting to say as pp, there is hope.

Get referred to The Long Covid clinic..
My daughter has it . Given her POTS.. and heart stop and Fibromyalgia and Hemiplegic migraines and an host of other health issues.. she's under the care of several specialists now and on loads of medication .She has to use a walking stick and other aids and she's only 32.

I'm like you @Snippysocks I never thought it would happen to me. Where do you find the long covid support group? I'd like to find out more about that.

When I was first sick I was functioning like an 90 yr old shuffling round the block once a day.

Now 2 years later I reckon I'm aged around 80. Can walk at a normal speed on the flat but slower uphill and run out of breath on stairs. I have days where I lie down on the sofa for 10 minutes and find I've slept for 3 hours.

So I guess I'm improved, but considering I'm 44 and not 80 it's still pretty shit. And there will be 80 yr olds who can climb more steps than me i'm sure.

3 + years in I’m still very ill. Better than 2 years ago not not much. Sorry to hear some others are still suffering too. I think having children with this must be heartbreaking. @Moier I’m sorry your daughter is also so badly affected.

I’m probably about 15-25% of my old self. Depending on the day and the particular activity.

My brain is much less affected than my body / muscles. I can do a 25-30 hour work week within 45 hours. The extra 15-20 hours I need to rest, snooze or meditate.

BUT I can’t do anything physical - even a slow walk screws me over - I have been somewhat better than I am right now - but on trying to exercise I got significantly worse again.

I wonder if I did 5 hours work a week if I’d make more physical progress… ? but I’m so fed up of doing nothing it kills me! Can anyone relate??