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.

Ernieshere from one single parent to another. Your DS is going out to holiday club where he will be with peers and that is good for him. Plus he loves it! Honestly, if my DS went to holiday club I would be so happy, not guilty. DD went to a fabulous one which had a great programme of events. It was great for her confidence and meeting other children as it was not linked to her school, which was also good practice for when she went to high school.

DS has some additional needs and it is very hard to get him to settle away from what he knows, including outside childcare. They are just different children. You are giving your DS a good opportunity to be with peers and learn important social skills and you need to rest, by the sounds of it.

Criticallythinking good metaphor about the oxygen masks. You should not feel awful - I am sure your DS copes when he is there, otherwise the childminder would be sending him home! It has taken a long time (years) to get my DS to settle to childcare even in the house, but it does him good to have some routine which does not involve me.

@Criticallythinking

“I am more and more convinced that our immune systems have lost the ability to calm down. I wonder if this will ease with time or if we can do anything to help it.”

I’ve been taking these for the past month or 2. I read somewhere they help repair and boost a damaged immune system. Who knows if they’re working... but I'm going to continue with them for a bit.

www.amazon.co.uk/gp/product/B0029D33F0/ref=ppx_yo_dt_b_asin_title_o01_s00?psc=1&tag=mumsnetforu03-21&ie=UTF8

@Erniesheree Sorry that sounds awful but it’s incredible that you are going through this whilst caring for your child. Apparently Melatonin has been shown to help Tinnitus. Maybe worth a try?

@Ernieshere @KatySun it is so hard to care for others while we are struggling to care for ourselves... I have been with DD all summer and I can just about do the basics but I totally understand feeling that you can't offer them the enrichment that they need and deserve... it's really difficult.

I had another so so night of sleep here. Woke for about an hour at 5am with the same pressure on my chest, and then a really strange 'pop' and then my tinnitus lessened. It was really odd when it happened. So far tinnitus is still much quieter than before but let's see if it ramps up as the day progresses...

@Ernieshere my heart goes out to you so much! I've suffered dreadfully with awful chronic tinnitus over the past five months (has it before Covid a little too due to blocked Eustachian tubes) and it's literally driven me to distraction! My mental health has gone right down the pan as it wouldn't let me sleep, work, relax and read a book or watch TV, engage in conversation etc. I've had some dark times..... but I'm so much luckier than you in that my children are adults and I have DH here. Have you found anything which helps st all? I find REST calms it - but I guess with s child, that's not so easy for you. I could cry for you but glad you've got an audiology referral and have contacted Tinnitus UK, I believe they're very helpful.

I firmly believe the T is caused by inflammation in our system and prob will go! It just might take time. Vit B12 has been thought to help T, not sure if you've tried that. Sending you so much 💐☕️ xx

I'm sorry to all those suffering from sleepnissues too. I dread going to bed and I used to love my bed! I take one piriton and one Kalm before bed and most of the time it does seem to work. When I'm having particularly bad 'Covid Nights' and the T is screaming and I have other weird symptoms manifesting at night though. Nothing works! To you all, 💐

I'm five months on Sat, when will this all end?! Xx

Spoke too soon... tinnitus is back. Still, was nice to have some minutes peace ...

@TiddleTaddleTat 😞 I know that feeling all too well, the relief when it goes and the crushing feeling when it returns. 💐

@Whatapickle78 @fedupofbed @Ernieshere
Sorry you had bad night.
Hope you feel better today.
It's true we don't know what immune system going to throw at us next.
Woke up feeling s.o.b. not had that since April!

@MillStone thanks I’ll check those out. Currently on immune support vitamins from boots, calcium (I was deficient) and iron... let’s see!

Hope everyone has a tolerable day

I’m also sleeping really badly at the moment. I woke up at 4am today, I’ve no idea why, but I find that my nose feels a bit blocked so that breathing is more difficult, and maybe that is waking me up.

Can anyone recommend the best antihistamine that I can take before going to bed. I don’t really want to take one that you have to take every 4 hours as I don’t want to feel any more drowsy during the daytime!

Going against the grain, I am sleeping a lot. So tired today I guess after going shopping yesterday. Throat started to feel sore and I have got a bit of a chest cough. I have to go out twice to the weekend so I guess that will finish me off and I will be really ill next week.

Folks...can I ask a favour?

I noticed a few days back someone posted a video clip entitled "will I get better?" or something similar. Can I ask...is the answer "yes"? Struggling for time at the mo, work is so full on, when I get home the last thing I wanna do is delve into Covid stuff. If you've watched it, a yay or nae would be grand. Haha xxx
You doing alright tout le monde? Xxx

Hello @AndsLee that was me and the answer was yes
The videos are very short- like 1 min 30 in case you feel able to watch

@AndsLee link to that particular video here

m.youtube.com/watch?v=FfeZdBWs0UY

@BeautifulPark I'm sorry you're feeling breathless again - I hope it's short lived.

@MillStone thank you for the supplement recommendation. That looks really interesting because as you say it's immune balancing rather than boosting. Maybe that will be my next purchase!

@Frankiemintz the 1 a day antihistamines help my hay fever but don't make me sleepy. At the moment I'm taking piriton before bed for sleep and beconase nasal spray for hayfever/congestion as needed.

I've had a busy day for me again - 2200 steps, and up and down the stairs 5 times, a record 💪. Wishing everyone a good night's sleep tonight. Onwards and upwards.

@fedupofbed 2200 is impressive ! So pleased that you have seen a positive turn and starting to be more active. Take care to keep on with the rests!

I'm feeling a bit despondent as I'm still not up to where I was before I had the relapse last week. I think my mistake was rather than stick at the 1500-1900 steps I was doing fine on, I had a day of 2500, then one of 3500 ish, and boom - in bed for a week. I'm really determined to get back to 1900 and try and just increase by about 200 steps each week, as far as possible. I reckon a higher step day necessitates a quieter couple of days afterwards.

All these things are so bloody difficult to do in practice!!

I also feel I need to try and get outdoors at least a couple of time for what remains of the Summer. Even if it means being driven somewhere just to look at a different view for a bit.

DH has been really angry about my being unwell the last few days, and is clearly struggling with the whole thing. Talking it through is exhausting for me, not least because he seems to go in circles of still not understanding it. I send links and videos but... maybe it will take time. He's helpful with the practical stuff but emotionally, not great right now.

So sorry for those of you suffering tinnitus and fatigue, it sounds very debilitating still. Particularly if your partners/husbands are not getting it 💐.

My cough seems to have returned. What seems to trigger relapses for me is talking. I met with a friend yesterday and we had a good chat. This was not as bad as my last face to face meeting with someone a month ago where I was zoning in and out with dizziness, but I did start coughing again and with it, the chest pain has returned.

I have been wondering about this, for me at least / I had a bad dry cough for over three months. It has really only eased properly in the last month. As it has gone, so has the chest pain (mostly) and upper back pain. What triggers it now is talking and driving longer distances (sometimes also sitting working). So I think the on-going chest pain was linked to the cough even though they did not seem simultaneous at the time (ie I had the chest pain even when I was not coughing). But now it is triggered by talking. Even talking more loudly and excitedly than usual will set it off, not just talking for longer. I have a full on migraine today as well.

I mean, I talk to my children daily but clearly just on and off throughout the day and not in a sustained manner. Long since stopped raising my voice in any way after I would run out of breath after a few words!

So yes, not sure what to make of that.

@LetsBeSensible it might be ok- sometimes it is, and there is no rhyme or reason. Sending positive vibes.

@TiddleTaddleTat sorry about your DH. I reckon they start to feel neglected. That and feeling they can’t fix it. Maybe getting out together for a short walk or nice view somewhere in the open (but being driven there) might give you both the opportunity to chat away from the pressure cooker at home (that’s how home often feels to me!)

I had a classic Covid night. Nerve pains in arms back, barely any sleep and then on the loo at 4 to fully embrace my new symptom of going then.

Staying positive is bloody hard work isn’t it! I’ve got to talk to occupational health at work today too.

@Criticallythinking Good luck with occupational health , hopefully they can be helpful in getting a plan together

@KatySun I agree talking is a trigger for me, and volume / duration is really important . It explains why I have such a burning chest this morning after getting quite cross with DH yesterday!

GP call for me this morning. Hoping to get a referral somewhere now.

Morning all. Last week my nose started to stream and has been so itchy - sneezing too. This virus I've had seems to have triggered some sort of hay fever/allergic reaction. The pharmacist has recommended Loratidine once a day. Anyone else experiencing this? I've never had it before.

Forgot to say CT scan results not back yet - I keep being told they're being reviewed. Don't know whether this is good or bad. I suppose if they'd found something serious, I'd have been contacted by now. The hay fever thing has set my upper back and chest off again and a slight SOB.

Yes TiddleTaddle I can imagine. I had a conversation, only mildly heated and very short, with ex last weekend and it triggered pain as well. This longer, quite calm and much welcome conversation yesterday has caused longer lasting pain (as in still sore today). So I can imagine in a day to day relationship where you are constantly discussing - and maybe arguing too - then it makes it worse. I wondered about asking for a referral to a respiratory therapist -my GP has said it is caused by the fact that my cardio-respiratory fitness is not back to normal, but I have no idea what will help with this. I hope your GP is helpful.

Lightsabre I have seasonal allergies which I have had since my twenties. I take Loretadine and it is the best antihistamine for me. I also find Opticrom eye drops helpful if my eyes are itching. Hopefully the allergies will pass.

@KatySun@Criticallythinking@LetsBeSensible@TiddleTaddleTat

Thinking of you today in everything you do.

On a positive note I'm (slowly) increasing distance of my daily walks.
I'm managing to work from home part-time, though a struggle at times.
It's really one day at a time.
Sending you all loving thoughts.

Well the GP was just apologetic and said she thinks a cardiology referral might be needed (but is not yet making one as needs to see how it went with her other similar patient ?!) she is really reluctant to make a referral now.
It is being called post covid syndrome but no 'code' for it yet apparently.
Sympathetic but ... I'm just being left for now. Not all that helpful.

Morning folks

@Criticallythinking Thanks for that - useful.

Not really much to report today. I had some funny dreams the last few nights, and the snoring sensation was back too, but I don't feel it as intense as before. I think I have had a minor relapse, so, I suspect if it continues in this trajectory, it will eventually peter out, right?

No news from 24 hour ECG. Off for bloods today... Will report back what they are testing for. @TiddleTaddleTat Keep on at your GP...

Hope everyone's doing OK? xx

@AndsLee I’ve been having the most insane dreams too.

I just got some blood test results taken because of my new stomach issues. My calcium has dropped low again despite supplements. This has been consistent throughout this which I think is interesting. It’s like pieces of a puzzle.