Long covid sickness

[MsBarrington]

Hi all, first post so hope this is in the right place.

I became quite ill with covid at the beginning of this year and relapsed in the summer with all of the associated symptoms and after a&e trip was confirmed with pleurisy also. Since this I have been off work and have seen neurology, respiratory, had the lung function tests and am being seen in long covid rehab clinic for nhs workers.

I seen occupational health a few months ago during a time when my health was improving and the hope was that I could soon return to work but unfortunately I relapsed again. My manager is asking for a meeting next week but with long covid I cannot guarantee on any particular day I will be well enough to attend as some days I am completely bed bound with shortness of breath, fatigue and brain fog. Would any one with hr knowledge advise how I can word this to a particularly difficult manager who doesn’t quite believe in the severity of long covid?

I update her every week with all symptoms and steps I’m taking to recover.

Thank you all so much for taking the time to read.

Hi, sorry to hear you are so unwell. I am in the same boat unfortunately. Awful respiratory symptoms ongoing for 8 months. I am NHS and have been seen by the long covid service and have been sent for lung function tests. My manager has been good so far and my HR meetings have been virtual so I have managed them. I was very wheezy on the last one though. Are yours face to face? I would have struggled with that. What happens at a lung function test if you don't mind me asking? I am slightly nervous. Thanks.

Thank you I think I will ask if I can have the meeting virtually. It’s just so difficult to judge covid recovery. Luckily my occupational health team have been amazing. Please don’t be nervous for the lung function test. I was seated and had clip on the nose and asked to breathe into tube. Doesn’t take too long

Thank you for the advice wrt lung fuction. I've requested them many times for patients at work but have no idea what happens! I find it hard to do any sort of breathing test at the moment without having a massively uncomfortable coughing fit but these don't sound too bad. I hope you manage to get your meeting arranged that would suit you, but if on the day you just don't feel well enough they will have to rearrange. It is the nature of the condition unfortunately. I wouldn't wish it on anyone. I have had an awful 8 months

Thanks for your advice I hope your lung tests go well. Oh it’s an awful illness. I genuinely thought I was improving by the end of September but caught a cold and it was like I was back at the start of it all and for an nhs manager I find the lack of understanding very odd

I wish you a speedy recovery!

Sorry you are both having such a tough time. Long Covid is exhausting.
8 months is "early days" with it - you may still have a lot of improvement to come.
I was ill for over a year with it - exercise tolerance reduced to 100 yards with breathlessness and fatigue, had to hire a gardener, and get my shopping delivered.
I started to improve after a year, and can now walk a mile and do my own gardening. I began to pick up after my first two immunisations, both Pfizer - I gather about 30-40% of long Covid cases do.
It's important to NOT push yourself or do too much at once, or you will trigger a relapse, as you are finding. Try gentle walking and pottering, alternating with rest days, and only increase gradually as you find where your limit is.
I know it's frustrating - I used to be able to do 8 miles in a day, and I'm nowhere near getting back to that, but once you start to see small improvements, it does lift your spirits.
I hope you can educate your clueless manager, and good luck with your ongoing recovery.

Thank you Babdoc. I can't believe you have been suffering for so long! It's like you say, it's so up and down. Some days it's so hard to breathe I've been close to going to A&E. I've been feeling better over the last couple of days so I think I can get back to normal but then that heavy feeling decends on my chest and I realise I've done too much and get really breathless again! I have a Pfizer booster booked in for next week and I really don't know what to do. Do you think it would help? I'm scared to do anything that would make me worse. I hope you both get back to normal very soon x

Thanks both for the messages. It’s just so hard to manage at times let alone predict how you will be in a weeks time. The neurologist, respiratory consultant and occupational health all agree to go back when you are ready but it’s seems to be immensely difficult for my manager to understand this also

Good luck with ongoing recovery x

Definitely have your booster, Firstshoes*. It will increase your protection against a second Covid infection, and may help to reset your immune response, so helping with your long Covid symptoms.
I remember that awful "heavy chest" feeling - I got it during relapses, along with the coughing, breathlessness, etc, and also the unpleasant "fizzing" sensation in arm and leg muscles.
Thankfully, I haven't had either for quite a few months now. Keep your hopes up, pace yourself gently, and get your booster!