Admitting how bad long covid can be

[TurquoiseBeach]

If you have long covid, how vocal are you about it? Do you put plans off - even simple play dates for your kids, hoping energy might be ok in a couple of weeks? Do you tell people the real reason? Do work know how much harder it is to concentrate? Do clients know? If you freelance, have you cut hours, whilst telling them you have other work on? Have you quit work? Do you get scared at how long it's going on for? How many people really know? How many days are you wiped out for if you do normal stuff? Do you feel like you're in limbo? Have you gained weight from not being able to exercise like previously / not having energy to cook as healthily as before? Has your house gone to pot? Is your partner supportive? Do you feel guilty for not being the parent/partner you were?

I have long covid. I was first infected over a year ago. I am simply existing. About to lose my job as I've been off for so long and there's no sign of improvement, if anything I am getting worse.

I have attempted to go back a few times on reduced hours and couldn't cope, kept making mistakes, struggled with speaking for long periods due to my breathing issues, regularly found myself in tears which is completely unprofessional and inappropriate in my job role and I also picked up covid again, followed by another chest infection very quickly. I have currently been off since June. Meeting on Friday which I am certain is a dismissal as I've already seen occupational health etc.

I haven't left the house since July. I haven't seen anyone other than immediate family since then. I don't even speak to people on the phone as they always mention my breathing and it really gets me down.

I feel embarrassed by it oddly. My house is in desperate need of a deep clean as I just about manage the bare minimum. I have gained weight, my sleeping pattern is terrible, I am exhausted no matter how much rest I get, my hair has fallen out, my skin is awful, I look absolutely terrible. I don't even recognise myself. Even simple tasks like showering can leave me so breathless and exhausted I need to lay down straight after.

I am now on antidepressants because my mental health is at an all time low. My doctors aren't very helpful, I'm awaiting neurological and respiratory appointments which aren't until next year and cannot be sped up. I will admit I haven't been very proactive in trying to get the right help as I just don't have the energy and as soon as I mention my oxygen levels they try and send me to A&E.

But if any oh my friend's ask I just say I'm fine and I very much brush off any questions or avoid answering them. Some of my friends don't even know I am off work with it, like I said I feel very embarrassed about it all. I'm only 32 and I feel like things will never get any better.

Are you a journalist?????????????????????!!

I'm sorry. That sounds really hard. I'm trying to accept that I have to give my business up. I find it hard to not have a rough timeline of when things will get better and swing between hope and trying to accept this may be it now. I feel like I have an energy budget that changes each day, with each task taking up more energy than it used to, yet having an overall energy budget that's severely reduced. I've been getting worse the last few months. Are you unable to leave your house?

No, not a journalist. I was having a shit day. I was just thinking with the amount of people that have long covid, how many are trying to hold it together for outside world when they can get out? How many admit cognitive decline in the workplace, with the stigma that has? I had a hospital appointment yesterday and really struggled with the commute - a commute I used to do on top of an 11 hour day. I am fed up of feeling so depleted.

Hi ,your follow up makes sense OP, it was just a lot of questions in the first! are you getting any help or support ? i'm long term CFS so I can totally empathise, the service I am under is also now seeing long covid patients and yes, it's incredibly sh*t to go from being well to being so compromised. When you are used to working full-time to suddenly having to think about the energy you need to wash your hair,it can seem unbelievable and there is a constant comparison to what you "should "be able to manage. Everybody is an individual and many people do go on to improve and recover but equally it sounds like at the moment you are really having to push yourself every day to meet your obligations. There is a lot of advice out there online but the biggest thing that most people struggle with is to stop pushing yourself and try to reach a stable plateau.....once you are stable and off the energy boom and bust cycle it allows your body time to actually recover. I know this is easier said than done especially if you are self-employed but I think if I'd realised this years ago I wouldn't have had to leave work. It's a case of accepting what is your present state but remembering there is always hope that things can change. i can recommend a programme that you can do for free, that I am doing at the moment (its easy to spend ££££ in pursuit of a cure) www.danielvanloosbroek.com (( it also advises minimal time on social media which I am struggling with so may need to ban myself from mumsnet again!!))

@SallysCinnamon Check out your thyroid function ASAP, including TPO antibodies, because this could be an onset of Hashimoto autoimmune disease. This kind of autoimmune reaction, with extreme fatigue, weight gain, hair loss, dry skin etc. is not uncommon after Covid or even Covid vaccination. Antidepressants don't help at all if this is the cause.

I have had Long Covid and I can say it basically destroyed my life for a year then it was sort of awful but manageable for the following 12 months and now (2.5 years on) I am almost normal again!! It's utterly shit but I suppose what I am saying is to have hope. You will improve (slowly) and eventually, I am now very confident, I will fully recover. I would say I am 90% old me now, I can do all i need to and want to with the exception of hard sustained cardio (eg a run) but I can exercise moderately, work 4 days, clean my house, cook meals, drive, have FUN with my kids, drink wine etc. My life is my own again. I didn't take any anti-depressants but it was a hard slog. I also own my own business OP, I had to give up completely for a year, then i worked 1/2 a day a week, then 3 x 1/2 days and now I work 4 days a week (from home but sometimes in London) and I am OK! You WILL get there.

It's hard. See your GP to find out if there are any support groups.

@TurquoiseBeach thanks, it is really rubbish isn't it. My work have had enough now understandably because like you say there is no time line. Every time I've thought I was feeling better and made arrangements to go back I've then quickly deteriorated again. I'm really not looking forward to the meeting to be honest. I work for the NHS so you'd think they'd be more understanding but from the questions they wanted asking in the occupational health report it's obvious they think I'm just lazy and don't want to work.

I could leave the house but I feel so frightened of getting another infection and ending up back in hospital again. My oxygen levels can also drop quite quickly and I have fainted in the past due to this which again makes me feel frightened.

@Terzani thank you, i actually started levothyroidoxine back in March after having many blood tests due to an underactive thyroid. I was also given high dose vitamin D as my levels were incredibly low.

@popsickle555 your post gives me hope that one day I will feel normal again. I have never been asthmatic or struggled with my breathing, but am now on 2 different inhalers daily and having to keep a peak flow diary

Please take this for the drop in the ocean that it is, but it might help. I've just been struggling with a virus (nothing major, but floored me energy wise) and I was told to take carnitine. I ended up researching it a bit to check that it was safe etc and turns out it's a subject of loads of scientific studies in long COVID treatment. Cant remember the specifics but you can find it all easily if you Google it. It has a big role in energy apparently and can be v successful in treating the fatigue part of long COVID. I noticed a difference when I took it too. Just a thought and I'm sorry you're suffering.

CFS/ME sufferers have a lot of the same struggles.
Funnily enough I’ve found people very supportive of long covid sufferers, presumably because it’s occurred after illness.

I’ve not found people very supportive of my own struggles sadly, I don’t see any friends, DH has to do all cooking/housework/shopping etc. most days I barely have the energy to sit and eat a meal.

I recently read about LDN being used for CFS & long covid. You can buy it on private prescription for around £50 per month, there is a pharmacy in Scotland that was recommended on another thread, I don’t have the funds sadly & the nhs won’t prescribe. Sorry to hear so many of you are struggling.
ldnresearchtrust.org/LDN_Prescribers?field_country_target_id=6&field_statetelemed_target_id=All

@MEFibroHell I've had both and yes I agree

@MEFibroHell that honestly doesn't surprise me. I have a lovely friend who has suffered with CFS/ME for years and she is one of the few people I've felt comfortable sharing my struggles with. She's also said that she understands the shame I feel, but she's recently taken a huge step and gotten herself a scooter and a cleaner to try and get herself some independence and I'm so proud of her.

Thank you for information on supplements/medication I will certainly look into it.

Thanks for the advice and the hopeful posts. I realise my first post probably did sound like a journalist! The mix of sheer exhaustion from doing a journey I was so used to doing, the brain fog, inability to exercise etc along with the flippancy with which people dismiss covid/spreading covid, the denial by some of long covid was not great for me. I do finally have an appointment at a long covid clinic later in the month, so fingers crossed.

I know someone who regularly competed in triathlons and is now able to cycle a bit (2 years on), an ex colleague has returned to work (no idea what their life is like outside work), so they're both people who have made a recovery of sorts.

I've heard that lots of people with ME felt dismissed and hope that that is changing for them now.

To the poster that is an NHS worker - I'm so sorry - that must feel like a slap in the face. 💐

Long covid has destroyed my fitness. If I just walk around very slowly then I look fine but as soon as I try to do any more than that I feel really ill. But I don't look ill.

I do tell people but they don't get it, because I look okay when I'm sitting chatting or I meet someone in the supermarket. I don't go out much any more but I think people have just forgotten that I'm missing now.

My gym and running pals have more of an idea because I can't do those things any more. But they don't really understand how far from ever doing those things again I am.

I am actually considering buying a walking stick to carry so people realise I'm sick. But I can't quite bring myself to do it, it feels like a massive statement.

I was away for a couple nights recently and neded to use the lifts at the train station because I couldn't climb the stairs with my bag and someone told me I should leave the lift for people who needed it.

I asked for directions at my son's high school parents evening recently and the guy said 'I'll show you the way' then headed off at a normal pace and I couldn't keep up with him. I had to ask him tk slow down then he was embarrassed and I was embarrassed. If I'd had a stick he would have known.

@Rae36 I can't walk fast anymore I just can't do it. (I am only just past six weeks since covid start mind you) but I am an HCA on a busy ward and could not currently manage it. I feel really ill if I go to a shop then try another shop. I need someone/something to hold onto. All my joints have started hurting this week and it has made it worse. Feel so unwell all the time really.

I don't have long covid, but a friend of a friend was diagnosed with it. She attended the long covid clinic, followed all the advice but it didn't get any better. Then a few months ago, it was discovered thst she didn't have one covid, she has lung cancer. Because of the delay in diagnosis, it is now terminal.

I don't want to scaremonger, but please make sure that other possibilities have been ruled out

www.bbc.com/news/uk-england-suffolk-63088300.amp

I have had an x-ray already to rule lung tumours out.

Post viral fatigue is really underestimated - how terrible it can be. Do be aware though that sometimes what is happening is the start of autoimmune disease. My advice is start reading up on inflammatory/ autoimmune disease lifestyle modifications especially dietary. They are likely to help hugely, as are weight loss and gentle exercise.

I think a lot of people have no idea what Covid has done to them yet but sadly they will in the months and years ahead.

The fitness thing is horrible. You have my sympathies. I feel like I move like an old lady now. I hate that I can't be the mum to my kids that I was. I hate that my partner is overburdened trying to pick up the slack. I don't like it's stolen my business and my identity from me. I am disgusted by the fanatical 'it's just a cold' rhetoric from some, despite the mountain of evidence showing otherwise. I'm scared of what we are doing to the next generation.

I'll have a look at the autoimmune info - thanks. I've had a chest x-ray. It is important to rule other stuff out - I suspect long covid gets misdiagnosed and also that other conditions get misdiagnosed as LC.

Every post on here has literally also described my life as it is now.
@Rae36 Reading your post I can actually feel the fatigue you describe while sat on the sofa. I have to walk really slowly too, if I go too fast my minuscule energy reserves instantly deplete. I then feel even more dizzy, heart rate zooms up to around 140, I’m shaky, start sweating, out of breath. I have also considered going out with my hiking stick just to lean on……I doubt it will be used for its actual purpose ever again.

I also work bank zero hours for NHS, it’s only the last couple of weeks I think they believe I am as poorly as I say. At the end of the day I’m filling my zero hours!
I haven’t driven for seven weeks, my concentration and dizziness means I just don’t feel safe at the moment.

The one difference I think I have from you all is that I’m almost sixty, I still find it all embarrassing, I was fit and active before, now I do feel like an old lady.

Something interesting, I spoke to a Gp today, I was describing everything and feeling very down , she replied, that she’d heard so many times exactly what I am describing and stated how common LC is. I feel it’s been kept very quiet for some strange reason.

Furcoat I am having an emergency blood test today and I am going to take one of my son's crutches to lean on as I can't park close enough to the hospital to manage without leaning on something. I cried to the Dr yesterday as well as it is horrid losing all the energy I had. I am a HCA I can't even manage to stand for long, let alone get chased down the ward by a mentally unwell patient.

@MEFibroHell I can sympathise with that, I have MS and the fatigue is horrendous, I have to be careful over every single plan I make rest before, allow time for rest after. I have had to live like this for years, friends either not inviting me to things as I'll be too tired of not believing me when at the last minute I can't do something. Yet when I caught COVID and then suffered with the after effects for nearly 6 months that was accepted as true because it was all over the news! I've just had COVID again and once again feel like crap and expecting it will drag on for months while I try and recover.

I've sort of just fallen off the map. Close friends and family know, but I never figured out how to tell my wider circle without a "pity me" type facebook post, which I couldn't stomach. It's been 2.5 years now - I'm still very disabled. I have PoTS and histamine intolerance as well as post viral fatigue. The PoTS is extremely limiting. I can't stand for more than a couple of minutes, and can't walk more than a few dozen paces. The nuisance is that a regular wheelchair wouldn't be much help because sitting upright triggers PoTS (and the resultant post exertional malaise) too. Plus the layout of my flat wouldn't accommodate one.

I've slowly adjusted - this does feel like the new norm now, so I don't find myself thrashing against the state of things like I did in the first year. It's more that when I look around now and see what everyone else can do, there's a serious dissonance. How can that doddering 80 year old be walking down the road, and I can't? People standing in the Queen's queue for 14 hours straight just about blew my mind. But of course, I used to be able to do that (and probably would have been daft enough to join it!)

No work for me. My neurological symptoms affect me almost as much as the physical ones - concentrating for more than short periods leads to dizziness, head pressure, visual symptoms etc. Navigating the benefits system has been a heck of an eye opener. I've lost a lot of love for this country. I used to be a "productive" member of society, and felt well taken care of. That flips as soon as you become long term ill. Your value disappears. You fall into an entirely different category of person, and feel like you're being judged constantly even by the state that is supposed to be taking care of you. You have to fight constantly just to get your basic dues - yet those were my taxes. This is what they were paid for. I'm going through that battle with PIP at the moment. But being reliant on benefits is a really crappy way to live for all sorts of reasons. I don't know where we're supposed to source our self esteem from when we can't engage in life any more.

DP has been pretty good, but didn't start out that way. It was too much for them. They've adjusted. I think they too sometimes forget how limited I am now, and how much this has affected me. I'm not sure I'd be the same person again after this, even if I fully recovered. But if they left me, I'd be lost. I think that would be it for me. There wouldn't be a life left to live as I am, if I didn't at least have DP with me. I don't say that in the throes of despair; it's rational.

And yep, still scared. I've avoided reinfection so far. I can't bear the thought of becoming bedbound again. I have some PTSD from the acute infection (not being able to breathe), and it'll come rushing back if/when I do get reinfected. It comes rushing back when I have a symptom flare.

I can cope as I am, and time makes things easier. But I do live in fear of things getting yet worse.

Thanks for sharing. Wish I had something productive to say. 💐 I was unaware of how poorly ME/CFS community, amongst others were treated prior to covid. What makes me so angry now is the senselessness - it feels like it's gone beyond 'luck/bad luck' - it is now a govt choice to take no action at all, despite knowing the sheer volume of people that are going to suffer long term.