I've still got Long Covid and it's destroying my life :( - anyone else in the same boat?

[WetBlankety]

I'm just posting for a moan really. I got Covid many times but the last time I had it at the end of 2022, it triggered Long Covid. At first it wasn't that bad but as time has got on, it's quite obvious how much it is restricting my life.

I am an executive in a good job, a single parent and unfortunately for me, I had just started my new job at the end of 2022 when I got the Covid bout that turned into Long Covid. One of the reasons I think it developed was that I couldn't take a lot of time off as I was new in my role. I have not told work I have this though they do know I have some after effects of Covid as I simply cannot travel as much as the role demands. They have been good and have allowed me to do as much as I can.

At the start of the year, some dynamics at work changed which made this role a lot less appealing - so I started looking for another role and found a great one, but over the last week, my symptoms have come back a lot worse and it's clear to me that I cannot take a new role that may not be as accommodating as the one I'm in now, even if the one I'm in now is not making me happy and is causing me stress.

I'm lucky enough that I earn ok but I've had to hire a cleaner and a dog walker as to carry on working, I cannot do anything else. I can't even go shopping as walking around the shops is too tiring for me. I wake up, I work, I go into the office a few times a week and I come home and go to bed and that's it. It was beautiful this weekend but I can't even go for a walk as it's too exhausting.

I'm basically living on a double edged sword at the moment - I could stop work for a few months and just rest in the hope that I get better but I can't risk not being able to go back to work (as I'm a single parent so have no other financial support) and other people who have done this have not always improved or I carry on going, limping on in the hope that at some point this will just improve. It's such a miserable existence.

Didn’t want to read and run OP. I sympathise very much. I have CFS and am very much in the same boat, and can relate. X

Me. My diagnosis is relatively recent but looking back I think I've had it and tried to push through for some time. I'm not currently able to work at all. It's shit. You have my sympathy

My father has it. He is 82 but prior to his dose of covid he was going to the gym 4 times a week coupled with brisk daily walks. He is now napping 4 or 5 times a day and just about manages a short daily stroll. He has also had a massive cognitive decline, although thankfully that has improved hugely.

thanks all for the sympathy and sending sympathy back to @MassiveOvaryaction and @Thanksbetomoonah . I feel like we are a lost generation of people but I imagine people with CFS have felt like this for decades longer!

@chilliprawn I have 2 dcs, one is about to move out (is over 18) and the other one has just started their first job but has SN so is likely to live with me for some considerable time. At least they are not babies or toddlers otherwise I don't know how I would have coped!

@OchonAgusOchonOh my cognitive function has also improved. The doctor has said that when you start recovering, your cognitive function improves first and your physical function improves last so maybe your dad is on the road to recovery, although I know this is a very slow and long road!

the annoying thing is that I had thought I was getting better - but probably did too much and set myself back. I wouldn't have even looked for a new role if I didn't think I could take it. Now I am having to explain why I can't take the job and no one really gets it. The physical fatigue is so overwhelming yet the sleep is never that refreshing.

I hear you. I caught Covid in the first wave and have never fully recovered. Like you I’m well enough for existence but not much else and it is really miserable. I’m actually in the process of being made redundant from work which I think might be a blessing in disguise as it will enable me to take a few months off to really focus on recovery. I’m also part of a really supportive community on Facebook with advice and solidarity around managing and working towards recovery from long Covid. It’s so tough, I really feel for you.

ah I'm sorry to hear that @Aozora13 . I don't think people who haven't got it can understand how debilitating it is. If you'd told me before I got this that I might not be able to walk to the end of the road, I wouldn't have believed you. I was fit and healthy. I used to get up and run 5km before I went to work!

I was trying to explain to my kids it's like that point in flu where you know you're too ill to get up and do anything. It's like that but managing that feeling permanently around fitting in what you absolutely have to do to survive every day without making that feeling any worse.

My sympathies to everyone still struggling. It’s not the same but my son got covid early 2022 and has had stomach issues ever since- he’s now on a limited diet but even that doesn’t fully help so he is being referred to a paediatric gastroenterologist to see what else might help. The dietician we saw said she thinks we will be seeing massive issues for years now as a result of Covid and then there will be massive impacts on health due to the damage done to immune systems during lockdown especially for children whose developing immune system will have been severely impacted during this time (kids born 2019/2020/2021 etc) for literally years to come.
Its really very sobering and a bit surreal to think we went through this major pandemic… and it’s not really “over” for some…

how awful @fourelementary - I wonder what it is has affected in his stomach. Hopefully the gastroenterologist can figure it out. I was reading some research about how it stays for a long time in the gut for some people - maybe your son is one of them. Have they tested him for any allergies? I understand it triggered a lot of these issues in people.

Rant away @WetBlankety it's really really shit.

I got covid in the first wave in Feb 20 - initially I had 6 weeks off work, then coped until Jan 21 when I basically had a complete physical breakdown. I had 6 months off sick and then went back to work for 6 months, the off sick again, then back to work but with reduced hours, so it's pretty much overshadowed the past four years.

My role is senior and my company have been really good but one of the issues is that even part time the job is demanding. That plus life basics (two small kids) has just left me broken and I've just prompted discussion with work to make me redundant, which like @Aozora13 I'm hoping will be a blessing.

I'm hoping to work on short term contracts going forwards so I can work for 6 months at a more junior level and then rest for 3 months.