Long Covid = lazy?

[HappyBinosaur]

I read on another thread that someone thought that most people with Long Covid were lazy and people admit they use the excuse ‘Long Covid’ to delay going back to work. It made me worry to be honest.

AIBU to think that is what a lot of people think? I’ve seen it on Twitter a lot too.

I developed Long Covid a year ago and as a result also developed POTS and asthma. My life has completely changed and I’m still only on 60-70% of my usual working hours on a slow phased return. I use an electric scooter or wheelchair most of the time at work as I can’t walk far and work on a large school campus, I have to do most of my usual standing up duties sat down on a stool and still can’t manage full days.

Most people have been supportive and kind to my face but I do wonder whether people think I’m exaggerating or its psychological. Do people think I’m lazy? Or it’s an excuse.

I need to lie down a lot and walk very slowly I can still walk and some days are better than others.
I went on holiday and am getting out and about socialising in my school holiday because I want to do as much as possible with my children despite my limitations but again this is predominantly with the use of a mobility aid.

People tell me a look a lot better but that’s mostly because I’m now well supported so my mental health is better than it was when I first became unwell, mostly due to the fact I’m back in work.

For context I worked 40-45 hours a week before I got Covid and exercised a lot. I now spend most of the time sat down and have to rest frequently.

I’m experiencing long covid too. Fortunately people have been supportive & sympathetic so far. My GP has been useless though. I do feel mine has a psychological root, although my symptoms are physical. I’m trying to find a way through it.

@Dotjones so true!

@Chillypetal so sorry to hear about your daughter and I hope she makes a full recovery over time 💐

Really sorry to hear that so many do you are also suffering with LC. It’s utterly shit.

I wasn’t cynical or suspicious about this sort of chronic illness before it happened to me but I was certainly ignorant about how devastating it can be.

@Crumbwell honestly, check out the links we’ve mentioned above (curable, Nicole Sachs etc). It is NOT all in your head. I know that’s what it sounds like. I’ve been there, believe me, and at first it can sound like that is what being said, but that’s because the medical model just has it all wrong, and views our mental health and our physical health as these separate things.

Were human and our mind and body are connected in ways we’re only just starting to understand, and our nervous system plays such a huge role in our physical health, especially in terms of pain, fatigue etc. Alan Gordon is another amazing doctor in this field, and his “tell me about your pain” podcast, and book “the way out” are filled with the latest neuroscience on this.

The issues are NOT all in your head. But the solution isn’t in your body. It is in regulating your nervous system. Often people find emotional work a huge help (Nicole Sachs explains this better than I can here, and I honestly think every single human would be happier and healthier if they knew about her approach).

This paradigm shift in thinking about our health can be a big leap if you’re used to being highly medicalised and looking at the purely physical when it comes to health issues, but the more I read and educated myself on it, the more I am baffled at the fact that it isn’t just the accepted truth of what’s going on. Anyway, I really wish you all the best. I would keep an open mind and look into curable etc, but I understand it seems like woo hoo leap of faith stuff sometimes. Hopefully it plants a seed for some people though, as it is awful feeling so debilitated and hopeless (I have been there!).

I have a friend who has fibromyalgia. It's invisible. She looks fine and is great at masking. But she's in a lot of pain a lot of the time, sometimes can barely get out of bed. But people don't believe her, and those with long covid probably feel the same.
If people fake long covid for their own benefit shame on them.

This sounds pretty standard for POTS from my understanding of my friends who have it.
It's related to blood pressure, they've been told to increase their salt intake and also carry the small salt sachets for if they're struggling while out of the house since it raises your blood pressure - that might help even a small bit with those symptoms?

For those that use Curable, can I ask how you use it? I feel a bit stuck, I do a 101/5 min relaxation or meditation most days but I don't feel like it's moving me on with any of my chronic health issues so much beyond just being relaxing, so that would be migraine and covid fatigue. I feel mentally it's helpful but not so much with fatigue, would be interested in rebooting my approach (and will check out the links on here).

Op you can't control what others think, you actually sound like you are far from lazy, and may even be doing too much! Using a mobility scooter, sitting down to work, this all sounds hard for you, I relate completely. It's the uncertainty of not knowing when the fatigue will hit you that I find difficult and makes you worried about letting people down.

That should say 10/15 min relaxation or meditation...no edit button!

@FarFarFarAndAway are you doing a mix of the four types of activity? So education, brain training and writing along with meditating? I found lots of education great at the start, and then did a brain training or writing every 3-4 days (meditation pretty much daily Altho I prefer using insight timer for that now). It’s important not to do too much, so that you can really embed and practice the things you cover I find. The writing exercises have been key for me, which is why I now use journalspeak a lot. I did that daily for a few months (followed by meditation), and now do it a few times a week or as needed. A lot of people on the curable Fb page really rate the writing exercises (as I do) and find they get a big shift in healing once they commit to doing those regularly

Fatigue definitely took a long while to improve for me, but I have seen lots of improvements in it (prior to my recent covid ugh!) I found The cure for chronic pain podcast a huge help in my mindset throughout, so definitely recommend listening to that as well if you’re struggling (curable are sponsors, so it goes hand in hand with their work)

To be honest, there are always twats who will exploit "being sick" to their own advantage. In all walks of life. So yes, it would be foolish to think that some people might wonder if you are one of them. I have arthritis - which is very visible as I walk badly (it's in my spine amongst other places) - but this is just as much a condition where you can have arthritis and be able to do things or not, have pain or not.... everyone experiences it differently. Long Covid/ post-viral syndrome are equally one of the ones that some people exploit. Stress... bad back... the list goes on.

Anyone who knows you won't judge you like this. Anyone who does, you shouldn't be even slightly bothered by them. You know how you really are. And that is all that should matter. Those who make up illness will always exist, and it is them who should be ashamed, not you.

Just piggybacking on this to second/third salt for POTS. Remember to increase your fluid intake at the same time though - the fluids and salt work together to increase your blood volume and help you feel less dizzy and breathless. I’ve had POTS since before covid (not a brag 😁) and the recommended advice is to increase salt and fluid intake, do recumbent exercise rather than waking/jogging, and to try beta blockers to reduce heart rate if needed.

And sympathies, long covid and POTS can be really debilitating and hard to live with, especially when you’ve previously been really active or even just normal! You don’t need to worry about any stigma - there’s enough medical evidence out there for long covid that anyone denying it just looks like an idiot. That’s their hardship to live with.

@misskatamari thanks for that, very helpful.

OP, I haven't heard anything about people with Long Covid being thought of as lazy, most people I know either have struggled themselves or know someone who has after Covid, although not all by any means. So, I've found people pretty sympathetic especially if their 'mild' Covid hasn't been very mild.

There will always be one person that thinks weird things, but long covid is a real issue and most of us know.
I had it recently and it took my energy to bare minimum for 3 weeks and I did not have it badly, so I very well understand that with the full heavier versions you would not be able to make it far.
I hope you get better soon 💐

I don't think the majority think this, you will always get a few idiots and often these people like to use the Internet as they wouldn't dare say boo to a goose in real life. Long covid is very real and one of my family members have ended up with organ failure due to it . I actually have pots myself iv had it years so not due to covid and I'm in a Facebook support group for it and the members have literally quadrupled since covid. Pots can be completely debilitating and can effect every part of your life and this can be hard for people to understand and it can feel very lonely I'm sorry your having to go through this 😥

Yep you will always get some idiots who think this, leave them to it. Covid is not the first virus to cause post viral complications, that include but are not limited to debilitating fatigue, Viral meningitis, measles, glandular fever to name a few. They are just ignorant and best ignored.

I'm another person with long Covid that triggered POTS. Pre-Covid I was very fit and active (weight lifting, HIIT, cycling etc), and in a very stressful job. It feels like Covid has taken my entire life away from me.

My GP was useless (Tower Hamlets, I suppose it should be expected) and not at all interested. I was freaking out because the brain fog meant I couldn't do my job and that's my only source of income (and I've worked damn hard to build my career, I refuse to lose it all now). I won't even get into the fatigue. I finally saw a private GP and she referred me to a cardiologist/long Covid/POTS specialist. I've had to take a bank loan out to pay for it. Today I had a bill for £6.5k covering blood tests and autonomic function tests (done by one of the UK's leading Covid scientists). I cried when I got the bill. If anyone dares to suggest that I'm lazy or it's all in my head, I swear I'll find the strength to knock them out.

There is a huge amount of ignorance about long Covid. I'm learning more every day but I can understand that most people have no idea unless they have exposure to someone like us who is struggling with long Covid. What I find hard is 1)the frustration that it feels like I have lost everything I have worked so hard for and 2)that when people see how hard it is for me, they inevitably show a flash of "thank God it's not me" pity on their faces...and I think yes, you lucky sods, what I would give to have my life back!

Long Covid has totally changed my life and not for the better. I get exhausted walking. I'm struggling with brain fog and find it hard to do my job because my mind will go blank when I'm talking to customers. It's awful and I can't get any help with it.

I've never heard anyone say long covid equals lazy and totally believe that it's an illness.

@HundredMilesAnHour @QuestionableMouse I'm sorry to hear about your experiences, I've felt at times that the fatigue after covid has taken over everything, I feel a little better recently but before that, I felt despairing. I am not that badly affected compared with some/ If you are used to being a very busy, working 6 days a week person, as I was, then to not be able to normal activities is really a profound change, and very depressing at times. I do feel there are things I can do which improve things a bit, but it does feel uphill at times.

@HundredMilesAnHour @QuestionableMouse sending love and solidarity. It’s so shit x

@FarFarFarAndAway I felt despairing for a while too, especially before I got my wheelchair and scooter as I couldn’t do anything or go anywhere. I’m glad you’re feeling a bit better and really do hope you continue to improve.

@Bpdqueen
Thank you for your comments. It is so incredibly lonely.
I’d never heard of POTS before I developed it but it is so bloody debilitating.

My GP seems to think I also have this....been tested for everything and nothing found...have some brain fog and odd pains in left groin gland....a mild burning sensation at times, feel tired sometimes also.....i asked for mri scan on gland area and practice wont fund it as all my tests are normal so will do it privately at 300 ...not too bad....sometimes i dont feel like driving so dont....am retired but do like to get out etc....am hoping scan finds something....