Chronic health issues...are there better days ahead?

[FairTurtle]

I am struggling so much at the moment. I've never felt so lonely in my life. I've had a really difficult few years living with Long COVID. It's changed my life in so many ways. I don't leave the house or see my friends much. I don't have a partner. I don't think I'll ever have children. I'm in my early thirties.

Recently I've been having chronic pain for a few months too. In my back and arm and neck and hands. I was diagnosed with hypermobile EDS. Apparently it can get worse with age. There's not really any treatment and the pain gets me down so much. On top of the fatigue and post-exertional malaise.

It's hard to believe this is my life now. Sometimes it feels like a bad dream. I try really hard to keep my spirits up. But I feel so disconnected to everyone around me. Because it's been this way for 3 years now. I have nothing to look forward to. All my ambitions ruined. Just endless days of managing my health and symptoms. Doctor's appointments. Assessing pain levels. Trying desperately to find new solutions. No achievements. No accomplishments. No interesting weekend plans. Nothing to talk about. Nothing to update anyone on.

My life was relatively good and problem-free before all this. I did well in education, became a solicitor. I now only work 2 days a week and haven't progressed at all since the pandemic. I'd never endured any real hardship beyond the normal things, before getting sick. I have supportive parents for which I'm so grateful. But nothing feels like enough anymore. I feel a constant dread upon waking. I rarely feel joy. I feel so, so worthless.

I don't know what I'm asking really. I don't want to spread doom and gloom. I stay away from chronic illness communities because I don't want to believe it'll never get better.

I guess I'm interested to know whether anyone else has any experiences of really struggling with their health for months of years. And then regaining a decent quality of life eventually. I wish I could just feel well. Even just sometimes. Even just half the week.

I'm so sorry for my rant. Hope everyone is doing fine.

That's awful for you. I had long covid for 3 months and that was bad enough.
One of the worst things was not knowing how long it would continue.
Can you access a long covid clinic? There aren't many, but it might help if you can.
I found that doctors didn't help at all. I was tested for all sorts of cancers, and when they didn't find anything, there was nothing effective they could do.
You need to rest as much as you can, and don't push your body.
I also found that although I was barely eating anything, I could manage soup and jacket potatoes. Eat what you fancy, as it may be your body's way of telling you what nutrients it needs.
I hope that this will get better for you eventually. Feel free to pm me if you like.

https://www.england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

@Helloworld56 That link is 4 years old. A lot of long covid clinics are now closed, but all they do is tell you to rest and pace anyway. Which is what I've been doing.

I stay away from chronic illness communities because I don't want to believe it'll never get better.

I understand this, I have a chronic pain condition. I previously thought of myself as a strong and healthy person and it took me some time to adjust my self-perception. With my condition I have good days and bad days, but it is a lifelong condition. I may not get any worse, but I will never get better.

I don't have any magic formula to recommend. Sometimes I feel OK and want to get on with my life, other times I feel very sad and want to cry. All I can say is it's f-ing difficult!

I have long Covid.

I find Reddit more helpful than Long Covid clinics. Plenty of people there are recovering after 4 years.

Im one year in but recovering. I feel your pain and isolation. It’s a hideous disease.

Hi all,
Accidentally came across this in my General Health Notifications. Sorry to hear about your health. Is there a forum, group you could join and chat to people with similar problems? I have been up and down with my health problems regarding my Perimenopause. I go to forums, some sites for help, suggestions or just for a chat. Oh, last 2 weeks, had a chesty cough, nose problems, not sure if it is Covid related & gut problems. Still have the odd cough on and off. Not a good year.
Get well soon.

I have long covid too and it sucks. I'm sorry you're miserable @FairTurtle

Sounds like a cliché but I've been really trying to find joy in the small things - like getting super excited when my strawberry plant fruited, sitting in the garden listening to the birds, just having a nice cup of tea!

Pacing and planning is necessary but one thing you're missing is praise. Be nice to yourself! I'm guessing if you live alone you cook for yourself? Say thank you! Celebrate that you can sustain yourself like that. If someone else did stuff for you you'd appreciate it right? Learn to appreciate yourself. Super cheesy maybe but I think it works.

I was put on a course (it's online) by the long covid clinic called The Hope Programme. It's helped me understand what's going on and why I feel how I feel, as well as giving me coping strategies. Put me in touch with others in the same situation so I didn't feel so alone. Would recommend.

That sounds really tough to deal with especially when you are so young. Well done for being able to work 2 days a week, it may not feel like an achievement but it really is. You sound depressed which is totally understandable, have you sought any counselling? I know the NHS waits can be horrendous but could you pay privately or do you have any health schemes via your work that you could access? Also for your EDS, please seek out a physio as you need to do what you can to improve strength to support your joints to lessen the pain, they will work with you within your capabilities. Re-connect with your friends, don't isolate yourself. People can and do recover from long COVID, there is no reason to believe you won't be one of them. I think the PP's course recommendation sounds like a good idea if it's something you can access. I wish you well.