COVID Lungs 8wks plus

[baroqueandblue]

Saw the previous thread is almost full. Hope I've not duplicated a new thread! And I might not be the best person to be custodian of this one, so feel free someone else to start a replacement and I'll get this deleted. Otherwise -

Here we all are, at least 56 days plus 😕

inews.co.uk/news/health/coronavirus-covid-19-symptoms-uk-latest-fatigue-breathlessness-long-term-effects-2860360

@mumlurker

I couldn't agree more. I want to scream, 'But it isn't just about dying. There's very small risk of dying, but the illness itself is one they should try to avoid, as it can be really nasty.

@baroqueandblue, thanks for the new thread and @MelClare for tagging me - I totally sympathise with everything you say. I am going to be talking to my GP tomorrow re; at what point do we get referred, scanned, endoscopy etc to look at any issues. I'm waiting for the 90 day mark and then might get a private CT scan if my GP won't refer. It will cost £££ but I'm starting to get a bit desperate now. I feel so medically abandoned.

@Babdoc and @WorriesomeDad - how are you both fareing?

8 wk anniversary today.

Crippling fatigue. Heart thumping like a drum. Lungs feel stuffy and wet.

Mindfulness throughout the day is really helping to reduce my thumping heart.

I find the "stay safe" adverts a bit of a kick in the teeth...

"Stay Safe", don't catch the virus. What if you have/have had the virus? Where's the support there? That makes me feel REALLY isolated.

I thought my symptoms had gone now i'm wondering about the sneezing... I'd put it down to hayfever? Still very fatigued though and finding I'm tired even after napping.

@MelClare

There was an interesting twitter conversation someone posted on the slack group. I can't find it now but it was a woman who has SARS back in the day - took her 15 months to fully recover with many symptoms like ours, but she got there with little lasting damage and lives what she describes as a normal and full life now. Timeline read along the lines of - four or five months of it being crap followed by about a year of slow but steady recovery where she could reintroduce light exercise etc. I know 15 months is a long time but I'd take it over a lifetime - also worth noting she was very ill with pneumonia in the beginning.

Hello new thread and everyone on it on my 9/11 week anniversary.
I'm exhausted today. I did nothing yesterday or today and I'm still tired.
I'm having a knackered, light headed heart thumpy day. I've got so used to the tinnitus now.
I'm also permanently thirsty.

I don't think I will ever be 'normal' now. It has gone on for too long. I don't know what I will do if my work reopens. Well, I won't be working.
I've stopped thinking 'maybe next week'.
It won't happen.
The best I can do is 1500 steps on a really good day.
I'm not even existing anymore. I'm just a shape on the sofa and in bed. I can't sum up any emotion at all really.

Stay fucking safe. What a fucking joke. I thought I'd be ill for a week or so. I am literally living in a nightmare.

Can I follow you here?
I have had this virus for 70 odd days
Following the pattern of everyone else

I am feeling so low this weekend, I think this might be my life forever
Complete exhaustion, breathless in the extreme, dreadful reflux, depression and anxiety, sore gums, awful
Stomach upsets,?sneezing and sheer bloody misery
I am on my third dose of steroids and have strong antihistamines now in case of hay fever

As pp said, do envious of those doing loads

On days I feel ok, I bought masonry paint
I have just been looking at it feeling guilty

Hope everyone starts to heal soon xx

@Mittens030869

I know! There's so much more to it than just the death toll. Personally I don't think I'll be able to go back to work full time any time soon - imagine how the economy would fair if five percent or more of us are signed off sick for months on end?

@mumlurker Thank you for that. Yes, that makes a lot of sense to me. My CFS originally started after pneumonia last year, though it was also connected to my MH issues with PTSD, which made me more vulnerable.

It's encouraging to think that there might be light at the end of the tunnel, though. And it removes some of the frustration to know how long this can take.

I do get fed up with hearing COVID being referred to as a 'mild illness' for mist people. If only that were true.

@Mittens030869

Another thing this person mentioned was how depressed this made her feel especially in the early months. Sounds like she went back to work quite quickly and had a demanding academic job. I'm hoping many of us are ahead of the game, pre-empting the possibility of making ourselves worse through over exertion by resting as much as possible. I'm very lucky in that even when I go back to work, I'll be working from home until at least the end of the summer. I hope this means I'll be able rest lots, and work my hours flexibly. I know not everyone is this fortunate.

Oh dear, that should be 'most' not 'mist'.

And yes, I agree with you. And not just us, it puts a lot of partners in a very difficult position. My DH has had to take a lot more on than he would ever have expected, as I was our DDs' primary carer before.

Anyway, what's keeping me going is the idea that either this is like many other viral illnesses, where a small subset of those who catch it take ages to recover, or, it there is something more sinister afoot, our numbers globally will mean there will be pressure to investigate and search for ways to cure/manage the syndrome. At the moment there's a new article in the press nearly every day about us - it's a good sign. Even if our GPs etc seem unwilling to take this info on board..

I'm fortunate (or not) that I haven't been able to hold down a job, because of our DD1 (11) needing a lot of appointments because of her hearing and sight problems and other SEN, they both have adoption related attachment issues as well. So I was only doing voluntary work for a Christian charity working with Central Asian women's issues.

All that's on hold now, of course (my friend I work with is shielding anyway). But it means that I can't just rest because otherwise my DH wouldn't be able to work full-time from home. I can't do homeschooling but I can give support and reassurance to our DDs now I don't gf ave to self-isolate from them.

I hope you can continue to come through this working from home and resting.

@Mittens030869

I mean, that sounds like a full time job in itself! Hoping you turn a corner soon x

@MelClare I've just tried to have a nap and kept waking up with breathlessness/choking. Feels like something is pressing down on my chest and I can't get enough air in. It was the same last night. I can only sleep on my back as I have chest-wall inflammation so it hurts in any other position. It's like the combination of symptoms is designed to make life intolerable.

I've taken a Nexium after a week of being off them as my acid reflux is back. Hoping that will help with the sleep issues too. For those who are taking omazarapol or anything similar, how many are you taking a day? I was taking one every 12 hours but I think it reduced stomach acid too much and I couldn't digest food properly.

Totally agree with everyone that we are being overlooked by the medical profession and government with scant media attention. I think we are inconvenient for the "narrative" of the country getting over this and it's easier to dismiss us as "anxiety". But there are going to be more like us as lockdown gets eased. I have faith that answers will eventually come but not soon enough. Beginning to think I will be like this for months or years and wondering how long my employers will allow me to be on sick leave.

I came down with covid symptoms 8 weeks ago, ending up after 4 weeks on phone to gp who diagnosed suspected Covid and gave me antibiotics for a chest infection. Didn't work

Have a pattern of feeling better and then exercising, sometimes have 3 good days, and then crash again with chills, aches, sore chest, sore back and feeling tired.

I'm so over this

@mumlurker thank you for the kind words. Yes, it's very challenging at times, and it's therefore put a lot of pressure on my DH. Thankfully, since the negative test result, I've been able to to stop self-isolate from my DDs, and I've had plenty of cuddles with them.

@Linus1972 yes I agree. It's how long can we cope living like this??! It's truly grim. Hopefully we will get referrals eventually?

@MelClare That’s exactly it, it’s almost like falling into a lovely, deep sleep and then it wakes you or you sort of wake yourself as it feels stifling? Really odd..following this my head and face sometimes tingle and I get dizzy and can’t focus. Last night I had to walk around and tried my oximeter but it was fine. My dp is convinced it’s sleep panic attacks/internal tremors and reading info he sent me, it does sound like that, but it’s bizarre it happens randomly all of a sudden and so many of us have the same? It’s is a v stressful time and in practical terms, it being anxiety makes sense..but with all the other symptoms too 🤷‍♀️I’m really starting to dread falling asleep and am exhausted during the day..lay on sofa now and almost drifted off, but felt it creeping in again..wtf?! I didn’t have this before and it seems to be increasing at the moment.
I also feel let down by the doctor, she’ll tell me the results of my blood tests on Tuesday and I’m guessing if all is ok, she’ll leave if there. Where do you go from there when blood tests have been done, ecg, blood pressure, all ok (ish) on oximeter etc?
Does anyone still have the high heart rate in the morning? Surely it’s not normal to be 120 when you’ve just walked downstairs?

Those of you that have been signed off work for your symptoms, how is the absence being dealt with? I remember being told initially by my employer that the initial 7 days self isolation would not be considered as sick leave. What happens beyond that?

I've been working through my symptoms but after speaking to the GP on Friday have been signed off for 2 weeks now.

@Linus1972 I'm sorry you're still struggling - the breathlessness is just the worst. I'm taking 1 omeprazole (20mg) a day and I think it's really working as I'm not getting any reflux symptoms now. I've been tempted to try coming off but I'm just a bit scared that it might make the breathlessness worse.

@Mittens030869 I'm sorry it's so hard for your girls but yes lovely to be able to cuddle again. Like yours, my DH is trying to do everything - he's doing an amazing job but it's a bit of a struggle. There's definitely far too much screen time and minimal home schooling. I just have to go with it.

@Whatnext2018 @MelClare I just read something on slack about this. Someone saw a neurologist who said he thinks the virus irritates nerves and he wasn't worried. He's seen it a lot.