Just had a wtf moment

[howlongtilsummer]

I have long covid. A very old friend has just phoned - is aware I have long covid. I said I'd had a few good days straight, so cautiously optimistic and how about she pops in next week for a coffee, if I'm still ok. (Good day means a reprieve from a couple of symptoms and potential to walk down the road without being sick). She seemed pleased and agreed. She then said 'it's lucky you're not working - you could t do that with a job'. The weird thing is, I've always worked apart from mat leave. She knows this. She knows I worked my arse off up to long covid meaning I couldn't.

Even now, some (perhaps foolish) part of me thinks (hopes) I'll be able to work again at some point. I haven't closed my business down yet, though perhaps I should. Anyone else with long covid having these wtf moments?

Every day I get moments like this. Most people are entirely unaware of what having LC means, and seem to think we're just having a nice relaxing time. I work part time (8 hours pw) and spend nearly all the rest of my time resting. I'm still taking precautions like masking and avoiding crowds etc. At Christmas my family didn't want to test so we could have lunch together. My sister told me she couldn't imagine living in fear like we all were at the beginning of the pandemic. So for her and her family, it's over, and anyone who recognises it's not over and still wants to stay safe, we're "living in fear". I tried to explain that getting Covid again could send me back to being bedbound but she wasn't taking it in. As far as they're concerned, I'm unduly anxious and they're more concerned for my MH than my physical health. Even though mentally I'm much better than I was a couple of years ago. It's very frustrating - it feels like most people are literally living in a different world from us.

solidarity OP. I have had similar comments directed to me. Some people have no empathy.

I’ve really lost respect for a couple of people I was close to… they don’t seem to understand that you would give anything to get back to how you were. It’s really frustrating and it makes me feel really low, but you know what? I don’t have the bloody energy to deal with their stupidity, I have to concentrate on trying every little tweak I can to get well.

Oh yes. I've got long Covid (three and a half years in) and I have good days and bad days. On a bad day I can't get out of bed. On a good day I can cope with basic tasks if I pace myself carefully. I've had to stop work and am beginning to consider the fact that this is probably as good as I'm ever going to get. People do not understand LC or chronic fatigue and keep saying, 'Hopefully if you rest you'll get better'.

Either that or they do seem to think that I've got it easy.

I'm sorry. It's so weird, like a mental block some people have. I guess there's no way of knowing if you'll get better - other than time and hope, so you can't say, it will be six months, might be two years, might be never. Or they act like you haven't tried to seek medical help. I genuinely don't think I would be that lacking in empathy if I didn't have LC, but I didn't realise quite how many others had so little empathy.

@howlongtilsummer

‘You don’t know what you’ve lost til it’s gone’ - I actually hope people don’t ever realise how awful it is because I wouldn’t wish this on anybody. I think many people take their good health for granted. I know I did.

Yes, people worrying about your mental health! Makes you want to scream at times. It would be laughable if the consequences of LC weren’t so life limiting!

Very happy to have an LC survivors’ thread if anyone else is?? That is - I’m surviving, I’ve not got over it but would very much like to :)

I am optimistic I will get better than I am currently. If I don’t hope it all gets a bit bleak, so I try and stay hopeful where I can.

@howlongtilsummer i think interacting with people who come out with comments like this can be very draining, especially when you start the day with so few spoons. I’ve stopped feeling like I need to educate people like this.

@DaizyDee I feel like you in many ways. Last year, when I was managing to work I had a co-worker come in and announce they had tested positive for Covid but felt ok so they had come into work. I was raging!

They couldn't see my point - that the bloody govt might now announce 'if you feel ok you can still work' but that doesn't mean you aren't going to pass it onto someone who might not be ok, and who might be really bloody ill. This person had no mask on and had been touching the photocopier (and coughing on everything else) for half the morning before I found out. People keep saying 'It's nothing now - it's just like having a cold'. Yeah - for you maybe.

Eventually of course, I got another virus (which may well have been Covid again) and it has kicked me back down to CF and where I was 3 years ago.

I'm so sorry that happened to you. What a vile thing to do. I can't understand how so many people are ok with this

@Hatty65 that last message was in reply to you but forgot to tag

@breezesin
"Very happy to have an LC survivors’ thread if anyone else is?? That is - I’m surviving, I’ve not got over it but would very much like to :)"

This sounds like a good idea!

I'm happy to join in a LC thread too!

I alternate to being too tired to care about other people's opinions and being enraged at the patronising comments on 'People get hysterical about it. All that ridiculous lockdown was pointless'.

I'm so cross for @DaizyDee and the comments on mental health! I'm not anxious, or hysterical. I'm bloody ill thanks to Covid.

Thanks @Hatty65, being gaslit is a regular feature of life nowadays, it sucks but it helps to know others are out there who feel the same way and understand

There used to be a long covid support thread on here. Not sure if it's still active. Happy for this thread to be used as one or we can start a new one if we can't find the old one.

and yes to the gaslighting. Especially when people say 'during covid' as though lots more people aren't getting their lives screwed over by it daily! Ditto to those who think it's not harming kids.

@howlongtilsummer - yep the ‘during Covid’ comment… it’s time we started to acknowledge that this virus amongst others continues to disable people.

if you don’t mind us using this thread as a long covid support thread / place to vent that would be great! I didn’t know there was an old thread.

@DaizyDee
@Hatty65

Can I start the vent off by saying I’m knackered? 😂and as per, I probably did too much this week. Same old same old..

I'm happy to stay here, folks! I'd probably fail to find the other thread.

I've had a bad day today, for no apparent reason, which is what always sucks! Didn't go out anywhere yesterday, had a very low energy day. Pottered about a bit doing jobs like emptying dishwasher, and putting laundry on - nothing earth shattering or energetic, and I can usually manage that.

In bed for about 8pm as usual. Read for a bit. Didn't sleep particularly well, but I'm 58 and never sleep that well. Got up two or three times for a wee, but got off again. And then woke this morning aching all over, bones tired. Came down and lay on sofa for the morning feeling nauseous/aching - does anyone else get that? Went back to bed and dozed from 2 - 5pm this afternoon. Got up for the evening, but I'm tired and just browsing on here.

It's frustrating that I've felt so crap all day. We're supposed to be meeting friends for coffee this weekend, and I just don't feel like it. Haven't left the house for days and days, and not sure I can be bothered, particularly if it will tire me out. It's becoming far too easy to just not bother with anything in life. I'm usually quite a cheerful person, but I just feel 'meh' a lot of the time now.

Floored today too (kid picked up another bug at nursery, so it's my turn now). Sorry, you're feeling so meh - sometimes a little reprieve from a symptom or two really helps. Sometimes I fall off a cliff though for no apparent reason - fuck knows what's going on in our bodies.

Anyone know how I ask mumsnet to change the title of a thread?

The "during Covid" messaging is maddening. We're just coming out of the second largest wave. They mean "during the period when people were still concerned about Covid". Even though we should still be concerned!

@Hatty65 I crash after busy days regularly. I often think I'm coming down with a reinfection but it's always just a Long Covid flare brought on by doing too much. Rest is the only answer even though it's very boring.

Just diagnosed

Struggling

Had a very stressful 2 weeks, and I'm feeling ill and tired

It's dawning on me that I need to step down from a voluntary role I love.

Today will mostly be spent in bed, resting in preparation for tomorrow.

@user8800 I've had to cut back my work drastically and work out what my priorities are. It's not easy but with rest and pacing you can find a baseline and hopefully find a decent life for yourself. Looking after your MH for the initial stage is vital.

I'm not as bad as some of you, and still working full time. But I'm not doing anything else and I would really like my life back. Like going to the cinema, meeting friends at the pub, pottering in the garden........

((Hugs)) to all of you.
I don’t have LC but have ME that was made much worse by Covid… I can relate. Unfortunately.

It’s fucking hard.
The level of non understanding by … well everyone from family members (incl my dh), friends, let alone HCP is maddening.
One GP told ne it was great I had caught Covid because it was good for my immune system. I was coming to see him because all my symptoms had got so much worse :(:(
im struggling to trust any of them now.

Hope it's ok to jump onto this thread - a friend and I started a new social network for people with long COVID and ME/CFS, after I've struggled with both for over two years. Come join :)

https://nuracommunity.mn.co

Well I'm back here again, folks! Have spent all week feeling low, lacking energy and doing absolutely nothing. I'm just so tired of feeling tired!

My diet isn't very good, and that's probably one thing I could change. I'm eating too much (in general) and certainly too many carbs, which always makes me feel sluggish. The weather has been very rainy here, so it's too easy to stay indoors, and barely move off the sofa unless it's to go to the toilet. I'm eating because I'm bored, and tired and DH (who is super) tends to make stuff like macaroni cheese. Or something with chips. Or a bacon butty. He's a fairly limited cook, but is willingly saying, 'I'll cook tea - you're tired' which is kind, and I'm just eating whatever is put in front of me.

How's everyone else doing? I know that if I do Qi Gong it helps, but I just haven't got the energy to make myself do it at the moment. Feels like I'm stuck in 'limp' mode.

Hi again. Sorry you've not been feeling too good @Hatty65.
I've also had a bit of a crap week. I get recurrent UTIs and it's been especially bad the past week. Plus I now seem to be getting really bad cramping pain up and down my legs which is getting worse. That's definitely a LC symptom although I'm not sure about the UTIs because I used to get them pre Covid. It's so boring and tiring feeling like this all the time isn't it?
For diet, I do recommend getting food deliveries and ordering when you've just eaten. Then you can make sure you don't order the unhealthy stuff and keep your house stocked with healthy food. Not that I never eat crap - I just know if it's in the house I definitely will. I have very little will power😬