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Got Long Covid - ask me anything

18 replies

wannagetoutofhere · 17/08/2021 10:10

That’s it - ask away, and I’ll answer as best as I can.

I think many people don’t really know what it’s like to suddenly have a massive (hopefully not lifelong) health change and naively think it won’t happen to them!

OP posts:
purplesequins · 17/08/2021 10:16

I hope you get better soon!

how supportive is/was your gp?
what symptoms fo you have?

Knittingupastorm · 17/08/2021 10:17

Can you describe your situation with it - when did you have covid, how ill were you with that, what are your long covid symptoms etc?

Babdoc · 17/08/2021 10:26

I have had long Covid since getting out of hospital in April 2020, OP.
If it’s any comfort, I started seeing considerable improvement after my two Pfizer vaccine shots this spring.
My exercise tolerance has come up from 100 yards to two miles, and I can now do all my own mowing and gardening, after having to employ a gardener for the whole of 2020.
I still get relapses of fatigue, breathlessness and coughing if I overdo things, but I am only stuck on the sofa for a day rather than a week now. The first time I managed to climb a local hill after being ill was a major celebration.
So there is hope!

wannagetoutofhere · 17/08/2021 10:56

@purplesequins

My GP referred me to the Long Covid clinic - so in that sense - useful though I’ve yet to see any sustained benefit from the Long Covid clinic suggestions.

Symptoms… my energy is nearly nil. I save it all up to put a load of washing on or brush my teeth, load the dishwasher etc. I can’t stand up for more than a couple of minutes at a time or my legs go very weak and I feel like I’m going to fall over.

If I carry on standing up then later in the day and probably for the rest of the week, my energy will dip so much that I can no longer do my teeth or put washing in the machine. I just have to lie down all day.

I’ve learnt that I have to practise an extreme form of energy preservation - just to maintain current activity levels.

Apart from that I’m breathless after using stairs, I have low mood, my brain feels ‘muddy’ and the slightest cold seems to keep me ill for weeks rather than days.

OP posts:
Formybabies · 17/08/2021 10:59

When you tested positive for covid how bad was it? Did you need hospital treatment.
Hope you're better soon

WhatHaveIFound · 17/08/2021 11:13

Can I ask how long ago you were referred to the Long Covid clinic? Have you heard anything from them? Were you hospitalised when you had Covid? Do you have any good days when you feel better?

My DS (16yo) is also waiting for a Long Covid clinic appointment though it took seven months for our GP to finally refer him.

Babdoc · 17/08/2021 12:55

How long have you been ill, OP? About half of long Covid patients found they improved after vaccination, and several found spontaneous improvements after one year of illness.

lannistunut · 17/08/2021 12:58

Have you had to stop working? (This thought keeps me up at night!)

How are you getting on with caring for your kids (if you have kids)?

wannagetoutofhere · 17/08/2021 13:54

@WhatHaveIFound I was referred immediately, although I’d been dealing with LC for several months.

OP posts:
wannagetoutofhere · 17/08/2021 13:57

@Babdoc I have been ill for several months, neither vaccine made any difference.

@lannistunut I cannot work. I hope to go back when I’m better but who knows when that will be. I do have children, fortunately they’re not little. It’s a struggle.

I think most at risk for long Covid are single parents.

OP posts:
wannagetoutofhere · 17/08/2021 13:59

@WhatHaveIFound sorry missed some of the info. I wasn’t hospitalised and I do have days where my every is better - but I can pay for it later on with disproportionately less energy.

OP posts:
Babdoc · 17/08/2021 14:07

That pattern of remissions and relapses is classic in long Covid, OP. It’s important not to get carried away and overdo things on your good days, as it will just make the inevitable relapse worse and longer.
However, many of us find that we can gradually do more, and the relapses get less frequent and severe with time.
If you are only a few months in, there is every hope that you will eventually improve by yourself, but there are also trials on a new drug in Germany which has shown initial promise for treating long Covid.
In the meantime, try to get a good sleep every night, eat a healthy diet, and pace yourself gently for activity. Keep your spirits up, and be hopeful.

Back2Black · 17/08/2021 14:13

Very interesting thread, thanks OP. How has long covid affected your mental health?

wannagetoutofhere · 17/08/2021 17:41

@Babdoc

WRT relapses yes I agree with your point on pacing. Harder to manage is surprise sources of stress!

I haven’t seen that drug trial but I am pleased to hear there might be some treatments on the horizon.

@Babdoc @Back2Black
Staying hopeful is increasingly difficult and I feel a bit hopeless from time to time but mostly I’m holding up. This is probably because I have a good support from family.

OP posts:
Babdoc · 17/08/2021 17:59

OP, I had more or less written myself off as a chronic respiratory invalid last year, to the point I had even chosen my funeral hymns and readings, as I was so disabled by long Covid that I doubted I would live much longer!
It is depressing when you are incapacitated for months, and you wonder when you will ever turn the corner.
I found a supportive thread on MN where other long Covid patients shared their stories, and I was very heartened by a woman who began to improve after a year.
I reckoned if she could, then maybe I could too, and when I looked back at my pattern of relapses I realised they were actually spacing out. I stopped having that horrible fizzing burning sensation in my muscles after about nine months, and the chest heaviness went after about a year. I’m still breathless on hills, but I reckon I’m back to about 50% of my previous fitness.
Maybe keep a symptom diary and look for the early signs of improvement- focus on celebrating the days of better energy, rather than getting upset about the bad days.
As I said, you are still in the early part of your long Covid, and it’s perfectly possible that you will restore a lot more function than you have just now. Chin up, and keep on trucking!

wannagetoutofhere · 20/08/2021 07:23

@Back2Black For the first few months it didn’t affect my mental health, but as time has gone on it’s taken a bit of a dive as I’m less hopeful of recovering. That uncertainty is making me feel quite low at times.

There’s also the FOMO factor! I’d love to go for a swim but I know I can’t!

It’s hard to enjoy things when you’re really tired and you’re constantly monitoring yourself for signs of fatigue so you can switch to resting.

The short answer is that trying to keep sane has become yet another new thing to manage. It’s tough.

I will reply to babdoc in a bit but have to run just now.

OP posts:
Back2Black · 20/08/2021 20:54

That must be very frustrating @wannagetoutofhere especially if you are used to an active lifestyle. Hopefully you will get to have that swim soon!

I was only ill for a month with Covid and found it tough mentally, which surprised me. But I think that was partly due to the unknown.

All the best for a full recovery.

lollipopsdays · 06/03/2022 07:01

Had covid on Oct 2021 and still lot working and still waiting for my referral to the long covid clinic.I am always extremely tired and have to consciously pace myself to do the most important things like shower and make to eat. Gp said I have to have X-ray and blood tests before referral- did all tests and still waiting for referral. All tests we ok surprisingly but I am still extremely fatigued. It is very frustrating, sad, worrying in fact I am depressed

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