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.

😂 @AndsLee glad that you're feeling excited for your blood tests! I have a final one this week too to check sugar levels - this is more of a box ticking exercise though as the CFS service has requested it before they can see me.

Thank you to you and to @Whatapickle78 for your updates. It's bloody slow going but yes we are gradually getting stronger.

I'm now very close to the 6 month mark so a little update from me. Up until about a month ago I was still barely functioning. It was very difficult to go up and down the stairs due to the extreme fatigue, light headedness, crazy heart rate and general jittery 'falling off the edge of a cliff' feeling. I didn't know how to manage it - should I just rest, or try and do some activity as my body and heart were becoming so deconditioned. When I stayed in bed all the time though it just made me so low so I worked on getting to the garden as much as possible and doing very gentle movements from bed.

@Whatnext2018 you asked about omega 3 and I think that has helped me. About a month ago I started taking a specific high strength brand recommended for people with ME called Pharmepa Restore and it may be a coincidence but a few days later my mood seemed to lighten and although there seemed to be no instant physical change I just felt like I was in more healing mode. I started taking cold showers around about then too.

Things have moved on again over the last couple of weeks. I've been able to do more and more. As I've already posted I'm now doing gentle yoga, reading a book, going up and downstairs multiple times a day and more walks around the garden. My legs feel like they're coming alive again! Yesterday's achievement was taking some washing in off the line when it started to rain. This is so small but is actually a big milestone because I used to dream about being able to do the laundry again when I was really sick.

I still have such a long way to go. My big concerns at the moment are my sleep quality, my SOB (always in the background but really ramps up sometimes - I have lung function tests on Saturday), and my mental health. Despite my improvements over the last few weeks I still get depressed that I can do so little and also very panicky about breathing and heart symptoms still. Mentally my goalposts keep moving!

But it feels good to write this down. Up until a month ago it was very difficult to see any light ahead at all. Love, hope and strength to you all xx

Mini relapse here too. The COVID symptoms app have asked me to get tested again so i will but fully expect it to be negative. Same old, same old.

Looking on the bright side I will feel less of a fraud when I show up at the hospital on Thursday, I felt so good last week I was wondering whether I should still go.

@CrunchyCarrot thank you for dropping in! I'll have a look at that forum.

@TiddleTaddleTat it's just so tough for you 💐 but think you're definitely doing all the right things. It's so tempting though to try and get lots of jobs done when you've suddenly got a bit of extra energy. Can you work from home or do a phased return? I'm coming out of furlough soon and toying with the idea of doing a couple of hours a day from home when the kids are back at school... not sure though, may be more sensible to focus fully on my health until I'm stronger.

@TiddleTaddleTat you are doing the right thing, it’s so true that you need to recover first. I am applying for PiP now as well.
All my test results and X-ray are apparently normal. So I guess that I will now be diagnosed as having a flare up of CFS/ME. I think that will help with my benefits because I already have the medical history of CFS so it’s clearly long-term and therefore likely to last.

@LetsBeSensible yes one of the things I'm concerned about re. Diagnosis is that it is still labelled as post-Covid with no long-term connotations. I'm going to talk with my GP about this as I need to be able to access support while I recover.

@fedupofbed yes I can work mostly though not entirely remotely and a phased return might be possible. Still, the level that I'm functioning at right now is that I can't drive for 5 mins without triggering a relapse. A stressful video call might set me back a week. A phased return might need to be over a 6 month period (at least), I just don't know if that's possible. It would require some pretty significant adjustments being made by my employer, and I don't know if it might be better for my recovery just to stay off for another few months.

@TiddleTaddleTat

Sorry to read in your post that you are having such a tough time at present.
Just to let you know I'm thinking of you. Hope things work out.

Hi everyone, I saw a hospital specialist dentist this morning about my tongue...and potential slow healing thrush. Sharing details for those interested (@AndsLee @alittleprivacy I think you were having similar symptoms):

1. Firstly, I've had the thrush since at least May but 3 weeks ago tried a week of cordosyl mouthwash that made no difference. I was then prescribed 50mg fluconazole and have been on that for 2 weeks and using a tongue scraper. This has already resulted in noticeable improvements before going to hospital today.
2. the dentist said there was still a little coating on my tongue which could be some residual thrush combined with geographic tongue (a benign condition where the cells of the tongue renew at different rates)
3. the thrush coating he said could be due to different reasons. He said they often see it after someone has had a serious respiratory or gastro infection, especially if they haven't been eating or drinking enough. This rings true for me as I've lost 15% of my body weight in less than 2 months due to inability to eat on many days due to pain - I'm working on improving that now.
4. he said in rare cases omeprazole can cause thrush overgrowth on tongue but they don't know how and it's rare. Other reasons are antibiotic use - and I've had three weeks worth of those since lockdown so probably also influenced.
5. He didn't think acid reflux was related (but I do still have the stuck in throat feeling and sternum pain and had been having horrible belching so I don't think I'm out of the GERD woods yet)

My main issue is still shortness of breath. I don't notice it when I'm doing something - eg I mopped the downstairs floors yesterday in a fit of frustration at how little I've been able to clean, no problems doing that at the time but I then pay for it later). Am trying to get used to the shortness of breath feeling...and at some point this week will have the battle with the GP about a respiratory referral.

Thanks also to everyone for sharing their stories. It's so helpful, and does give hope. I don't know what week I'm on in terms of recovery - first symptoms 16th March but really wasn't that bad till early June since when Ive rarely had more than a couple of days feeling okay at any time. Hoping the 6 months and fuller recovery hits soon!

@TiddleTaddleTat I think you're right. I think I'd probably end up working more than my phased hours and getting really stressed. It's tough to know what's best. I'm lucky that I only work part time though so there's more leeway. I hope your employer is being understanding.

@givemeanother the SOB is horrible isn't it. I hope you get your respiratory referral.

@fedupofbed @BeautifulPark @LetsBeSensible thank you ! I think I'm ok mentally and mood-wise, but it might be I'm feeling numb about it because emotions use up so much energy...

The work question is a tricky one. I have a very full on job which is mentally exhausting. I think I might feel I could cope with work better if I could do more routine-type work , but there isn't much scope for that in what I do. I just really want to avoid returning, making myself worse and then setting recovery back even further. I struggled through for a long time with work from week 2 to about week 12 when I had to take some time off, and then returned and made myself even more ill. I feel like I have a second chance now.

@TiddleTaddleTat Sorry to hear you’re feeling rubbish, hoping it passes quickly for you. The thing with this is, there can be days when you feel really on the up, but then the same things return again and again.

Really quite bizarre...just been reading back on a mum and baby WhatsApp group on my phone way back when it all began. We went to a kids party first weekend of a March and i remember having hot flashes and sore throat on the 4th March (I remember specifically as is my dp’s birthday)
So strange to see the conversations and impending fear as lockdown approached etc, also some of us saying we have a ‘Tight chest’ or headache etc, but dismissing it as ‘Probably nothing’
So strange as feels like so long ago and I also seem to have forgotten huge amounts of time during that whole period..anyone else? I wonder if that’s psychological or was part of the illness..

Hi all,
Terrible night, after feeling fairly good mentally for a fair bit. Couldn’t sleep at all last night, finally fell asleep around 4 after visiting the toilet all night (sorry tmi) and my head almost pulsing..hard to explain, just that awful, adrenaline feeling I rarely get these days, felt quite scary as has been a while and couldn’t settle it or myself.
Had been doing well and planning playfsyes for next week and a short mini break for this weekend, now there’s no chance I can manage it.
I’ve kuckily been able to go out most days for quite a while now..shopping, the bank, a walk everyday etc.
Last night I was happily making lots of arrangements and lists of things I needed to do/get for Dd’s room..then I felt horrific.
I’m wondering if I pushed myself mentally? Overloaded my mind too much, even though it was with nice things and not stressful..
I’ve noted that I’m on day 14 of my cycle so could be during ovulation, relapses happen too, arms, wrists and hands aching today, headache and diareah, have to find a way to get through to 6.30 with an active two year old. It’s baffling to me how it can go Fromm so high to so low.
I also (stupidly) ate half a tub of ice cream (has been a long time) before bed..it was a no added sugar one, but I’ve no idea, could be this that’s set it off or ovulation..I’m almost six months now!

*Play dates
*From

@Whatnext2018 so sorry that sounds really grim. I had a bad nights sleep too, just felt like I was half awake all night then woke properly at 7am. I had the sensation of something sitting on my chest when I was awake in the early hours.
I also find the strain of concentrating , even on nice things , quite exhausting . I've had ice cream and red wine and think both made yesterday a worse day than it would have been otherwise.
I'm trying out turmeric as a supplement now. Going to phase out CQ10 as it's so expensive and stick to B complex , vit D, magnesium, C and zinc and then add in the turmeric.
Will report back if I see any effects.

Morning everyone. Sorry you have had a bad night @Whatnext2018 @TiddleTaddleTat it really is so up and down. I made a big improvement about a month ago. Started walking most mornings. Sob and chest pain almost gone but I still have days I step backwards for a few days then step forward again. I'm improving long term but I seem to get stuck at the same place for quite a while stepping backwards and forwards if that makes sense. I think we are so used to a steady progress of improvement with most illnesses this one is so hard to manage mentally and physically.

Sorry to hear your not good.
Hope today is better.

This is a real one step forward two steps back illness.

@Kitcat122 yes that is exactly how it is - feel better, then have a period of fluctuating symptoms, only for things to improve a little for a period, then another few days or weeks of symptoms. Etc.
If you look at it in terms of months, the trajectory is upwards (ie I feel I am very gradually getting better).
Some things definitely don't help - stress, too much sugar, alcohol in excess, lack of sleep, lack of rest, too much exertion.

@Whatnext2018 really sorry to hear this. Is it possible you might have picked up a virus of some kind? My stomach bug has turned into an almighty relapse and my last massive relapse was because I caught something from DS. It seems like the immune system doesn’t know when to switch off. I struggle with the idea that too much exertion does it as I have had busy weeks with no consequences and quiet weeks leading into relapses. However I do think mental stress (the negative kind) contributes.

Wishing all those relapsing too some hope and light x

Hello all, after four days of relapse symptoms as bad as any I've had, I'm feeling human again (I'm week 23 now). I definitely think it was triggered by the heat and humidity (was 36 degrees every day for a week where I am, no air conditioning or anything). Possibly also the lack of sleep owing to the heat, as well.

Just had a swab test which came back negative. I'd almost convinced myself I'd somehow caught it again, but it seems that the relapses really are just that, and a standard part of this trajectory.

Still feel a bit wobbly but not as bad as a few days ago.

@Criticallythinking I know what you mean about relapses sometimes seemingly coming out of nowhere. I wonder if for me it's like an elastic band - it can stretch and stretch and then it becomes too much and pings back, with a relapse

I can also be doing lots and be ok and then resting lots and not be ok..I’ve been looking at symptoms and when they worsen and can definitely see a pattern during ovulation and period, I think mine is all hormone related now.
Last months ovulation day was when I was terrible, i remember as my parents were staying and I couldn’t do anything that day whereas I’d been ok-ish most other days.
Every period seems to give me big problems and most major relapses were on he first day on my period in May, June & July.
I’m also seeing though that ovulation plays a big role as my mind seems very ‘Busy’ during this time and the inner tremors, had stomach etc come back,

@Criticallythinking I’m not sure, it does always feel like that when it comes back! My dd, myself and dp have all been sneezing lots, but then again, we have been on and off through this whole thing 🤷‍♀️

I wonder when this will possibly all end got us all..

*For!

It’s like a jigsaw puzzle isn’t it

@Whatnext2018 I don’t think I would have put this relapse down to a new virus if my DH hadn’t had it too. He’s better now but I am definitely not and now I’m being tested for inflammatory bowel disease! I’m sure it won’t be that but yet another mystery.

Also agree hormones play a huge part. I had a 2 week period with this bug and I have a mirena coil so I don’t normally bleed much. So weird

@TiddleTaddleTat yes that’s a good analogy isn’t it- something causes the band to ping.

@Criticallythinking Oh god I’m sorry, it’s just never ending isn’t it..!
When do you all honestly see us all being back to normal? By Christmas??