My lungs Part 5

[Spacecadetagain]

New thread for us

I’m about day 18, I’m very weak today, just resting as much as possible. Been coughing a bit more, but lungs are less sore.

I have CFS anyway so there are some symptoms which are the same/that I get when I get a virus (at full hit a few times a year) these are - itchy coated tongue, hair falls out a bit, weak muscles, temperature swings and IMPORTANT- frequent relapse. As much as you relapse, you recover. It’s part of the circle of ill. Don’t automatically take it as a bad sign. It’s the nature of these viruses (tough ones).

I live alone and called 111 the other night, my sats were ok and I’ve managed at home. My neighbour is brill, I’ve only told one other friend as I can’t bear the anxiety and upset from others. People totally freaked out when I said I thought I had it. I know they mean well but I’m kind of having to protect myself from their concern IYSWIM I feel I’m managing other’s fear and constant calls and texts I can’t be bothered.

Sorry that should have said I called 111 and they called an ambulance

Day 25 update tonight. I’m cream crackered but generally had a good day. Done what I would normally do on a relaxed weekend. Some jobs, a very short slow walk (25 mins), spoke to two friends, played with kids, played a game this eve with family. I’m absolutely exhausted now and in bed but managed a glass of wine and with the exception of chest pain this evening AGAIN and a bit of achiness I have felt pretty normal. Taken no painkillers for first day in ages. I really hope I’ve not done too much and won’t be back in bed all day tomorrow.

For what it’s worth DH who has had mild symptoms throughout is STILL also up and down. He’s not exactly been ill really more of a cold / v mild flu symptoms but now he feels fine for a couple of days and then has a day of coughing and tiredness. He’s not left the house other than a walk so no chance it’s something else. It really seems to linger and come in waves.

@Howmanysleepsnow

I don’t know if this is standard advice but I was told they’ll only admit to hospital with sats consistently below 90.

I was in A&E overnight on oxygen and they sent me home saying I’d recover better there unless I needed continuous oxygen.

What are his sats if he takes a few steps?

Oh @longshot I’m glad that your making small steps but my heart sinks that your still not “well” as the threads I joined before were to check on your progress. I think when you declare complete normality I may start to hope for myself!

@LetsBeSensible hats off to you that you’re managing this alone because genuinely if I hadn’t have had DH or the DD’s here I dread to think how desperate I’d have got especially at day 6/7. Ive bored everyone I know and abused this thread just to maintain human contact.

@stayathomegardener I just read your timescales etc with such interest because in the depths of darkness I keep wondering where the hell I got this? Theres me and DD1 who have deffo had it. DH and DD2 appear to be untouched although she had a cough and flushed cheeks for two days. When all of this started breaking out DH was put on wfh as a precursor to lock down and as it was rare to have him home I left him to do school runs and I spent every day blissfully gardening. Since March 7th Ive been to three places

1. Final school run the day schools closed (DD1 is yr 6 so i wanted to ensure we said goodbyes).
2. A bloody roadside diner (prob the most likely place).
3. My mothers.

My mum however had come back from Thailand in feb and my stepdad got ill with a “bad cold” but she wasnt ill. I visited them on the 15th march and got ill on the 23rd. All I keep pondering is, could I have got it there? After that length of time??

@TheDrsWife46
Hello 👋 I’m on what I think could be day 14 for me if what I have turns out to be covid19. Goodness knows... I’ve been feeling like it peaks around 2-3pm for me and I have a nap. My headache is constant and doesn’t shift...and the last few days I have had sharp chest and back pains that just come and go. Nothing constant or too worrying to be fair so that’s why I’m just not sure about what it is.
Thank you for asking for me. I hope you are feeling better and I’m sorry so many people here are struggling daily with this.

@Isadora2007 glad to hear your making progress

@JackJackIncredible what were your sats if you don’t mind me asking? I’ve now spoken to 3 levels of 111 advisor and am waiting on call back from a 4th. The 3rd suggested A&E, but DH said no, so as it stands I’m waiting for a dr to call with instructions to call an ambulance if sats drop below 90. Currently 92.

@letsbesensible I have CFS too, theres definitely a familiarity in terms of the ups and downs and the pattern, just some very different symptoms. Am trying to be patient because I know it might take me longer to recover than other people and I have other conditions as well, but I'm having the relapse panic which I'm sure you know well xx

@TheDrsWife46 years of CFS have trained me to survive alone for long periods of time. I stockpile anyway in case of illness and I’m happy enough as long as I have internet! So it’s harder for you, as you’re not used to it as “normal”.
@tangledyarn what are we, is it spoonies? There is a lot of overlap, and a lot of differences. The relapse panic, it’s such a nightmare... I’d have to be more than 6-8 weeks and relapsing before it really got me worried I think.

IMO everyone who does not have CFS is getting to experience a bit of it and it’s not nice. Especially when all you have ever known is that you get ill then get well. But sometimes it flip flops between the two.

@Howmanysleepsnow

Do you mean my sats now, or when I went to
A&E?

@LetsBeSensible its definitely given me a perspective on conditions like ME CFS lupus and fibromyalgia etc. I’m embarrassed that I cant be more stoic and brave. And im revolted at myself that the things I fear like this being a permeance like CFS are what posters like yourself are dealing with. I am so sorry if ever my posts frustrate you in their lack of appreciation for how this is your unrelenting life. But please be assured that I will walk away from this with a heightened sense if the life of those with chronic conditions that debilitate their lives. Xxx

@letsbesensible Thanks for the rationality, I should know the score really, I've been diagnosed with CFS for 20 years now! I think it's just that things have been so hard particularly over the last 5 years health wise with other chronic stuff too and ive already lost so much and worked so hard to try and cling onto the things that I still have that I'm terrified this is going to take those things too. I just need to keep repeating "I've got a bad virus, its going to take time, theres no need to panic" a million times a day Thankyou

@TheDrsWife46 don’t feel bad! I was once where you are now, just take heart that you can cope with it and you will get through it. All is not lost. You probably can’t feel much worse. You might feel less worse soon.
In the beginning, when I got CGD I was really angry and annoyed and upset, over time I just let it all go. At the end of the day you usually start recovering at some point...

@tangledyarn you know you can do it, you’ve got through it before

@thedrswife46 Dont be so hard on yourself this is a horrible scary experience whatever your health is like usually and you are entitled to those feelings. I hope tommorow is a better day for you xxxn

Thank you. I think we’re all stuck in the “how long will I feel like this” and “will I feel like this forever” mode.

Keep posting people. It really helps to see people having better and better days. We’re clearly some of the first people in the country to have got this to be weeks and weeks into it. So all we have is each other for advice. Thank you for being so gracious.

Ive had to wait for dd1 to fall asleep before i dare take my kalms night time tablets (only thing helping me sleep through the shaking/muscle pins) and DH is up playing poker so he promises to check on us as we sleep. So hoping i get some real rest now. Especially as im back in my bed for the first time in two weeks as he claimed the sofa for his online poker night!

@musicposy Just wanted to say I'm feeling very like you today and on a similar timescale at day30, so although its awful it's nice to know I'm not alone and you arent either.We can definitely get through this!

Definitely feeling increased insight and appreciation for anyone suffering with fatigue as part of a chronic medical condition.

I’m on day 12 (I think) and the tiredness hits me like a wall. I feel like I’ve been punched in the stomach, I get a fever again and constricted feeling. A few hours earlier in the day I can have felt okay.

Who is the longest running sufferer? I feel like I need to know what I’m up against!

I appreciate those who are now able to appreciate long term fatigue conditions.
Although if you’re really going to be in the club, I do need to ask you whether you have thought of trying yoga or improving your diet to see if that makes you better 🤣🤣🤣 have you tried vitamin d😂😂😂

@TheDrsWife46 it’s inherently quite a scary illness, made worse by having to manage completely alone. If anything else made me this ill I’d want a doctor to listen and advise me.

Has everyone else had antibiotics? 111 refused to prescribe anything despite ongoing chest pain and GP won’t speak to me about it as it’s COVID related.

@LetsBeSensible that must be hugely frustrating/enraging!

@oncemorewithfeeling I was prescribed antibiotics yesterday. To be honest I dont think I've got a bacterial infection but I thought I'd better give them a go as suggested. I'm on day 30 so it seemed daft to not check.

Thanks @tangledyarn, it’s hard with this this to know isn’t it. My feeling was that this isn’t an illness to mess about with and if I have got a secondary bacterial infection I’d really rather not adopt a wait and see approach. Sadly 111 nurse wasn’t helpful (spent all day going through the various levels to speak to her) as she eventually told she was working from home so couldn’t refer me on to a doctor or prescribe (which she normally could). It didn’t fill me with confidence, although not her fault.

@JackJackIncredible
If you had some underlying condition before, ensure that it is handled well.
Wishing you recovery soon