Long covid - rant/support/grieve thread

[GlimpsesOfMe]

Anyone with long covid, living with/ caring for someone with long covid fancy a support thread? A space to rant, grieve, support, share tips and research etc with others who can relate.

I've tried to explain it to some IRL, but they don't seem to get it. I need help in setting some boundaries. If I manage to meet someone, I'm already pushing through. I'm already going to pay a high price. I don't want to keep explaining that I (and therefore my kids miss out so much too, which breaks me) can't do big day out stints. It's depressing and lonely repeating it.

On a really good day, I can manage a playground for a couple of hours, but will need lots of rest before and after. If I make it to something, I've been told 'oh that's lucky' in a sarcastic tone as though I'm making it up. As if I've decided to thwart my kids' lives, overload my (bloody lovely) partner, given up the business I loved, stopped exercising, develop a range of complex health issues, eat through my savings and make my world so tiny etc for a bloody laugh.

I'm sorry you're going through this. I had it a year ago and it's utterly debilitating. It lasted for three months and then symptoms slowly started clearing.

You are right that other people just don't get it. You're not 'obviously' I'll and externally, there's nothing to see. They can't see the exhaustion and they think you're exaggerating.

The important thing is never to overdo things. If people don't understand, that's their lookout. Try not to let it bother you.

Good luck, there will be an end to it.

Can I join the club. Am 73, got Covid last September,3 weeks after getting a puppy!!! Lost our last dog Jan 23 almost 18. Spent months debating,(yes I tried multiple rescues, before I get chewed up) first time for COVID,had had 4 boxes, been really careful. Am in the Adrian Martineau covidence study,4 years now. I felt so bloody ill,ever symptom in the book! I missed doggos first walk when she had had her jabs. Getting better. 12th October went to firework display in the local beach. Felt very unwell when I got home. Ridiculous breathlessness, course I was asked "how breathless",well one day I took 2 pillow cases off our bed,was then gasping for breath. I've got a spirometer and says monitor, both normal range. Chest pains one night, going to jaw. 111, sent paramedics ambulance. Told at the ED long COVID,lots of different aches and pains. Had bloods, ECG,later cardiac echo,still waiting results and follow up appointment. I couldn't believe it, never had a cough cold anything for 15 plus years. I was nursing over 40 years,so I started doing the breath excercises, have worked on respiratory wards. Thought I was doing ok. No where back to my normal fitness level, which would be weights,e bike,hill walking. A couple of weeks ago I started getting breathless again. It sucks! My DD said the first time you get it is the worst, really hoping there isn't a second. How are you?

I didn't type "four boxes" I typed four vaccinations, blasted phone. Oddly, the study I am in said people who don't sleep long hours and post menopausal women tended to be the ones hit with long COVID. Seven months now and counting 🤬

I had a meltdown about something last Sunday.

Been wiped out since it seems Long Covid even stops you having a good cry. Just back to laying down unable to do anything, terrible terrible brain fog and headache.

Thought l was getting a bit better. Now on month 9

Yep, DP is now over 3 years. No end in sight, and as it goes on he gets more and more depressed and unhappy. Was in a manual job, now barely leaves the house.
He's been to various clinics including a year under UCLH but now been sent back to our local clinic. But they can never complete even baseline assessments as his BP spikes every time.

I'm so sorry you are struggling. Rant away. I've had ME and it's so similar. Utterly shit. The best advice I had was to stay away from people who doubt your illness.

How long have you been suffering @GlimpsesOfMe ?

Hey. I’m lying in bed having a cry.

No long Covid dx - but coming up to two years of debilitating fatigue. It started three months after I first got Covid.

Id had two good days and yesterday I went on a cross trainer for ten minutes. So now I’m back in bed and feeling so fucking shit.

Whatever it is that happened to me, I don’t know, it’s also mental health, post meno but had to stop taking hrt after early stage breast cancer. Plus iron deficiency anaemia, and more recently vit d deficiency. So maybe it’s long Covid, maybe not. I feel like I keep getting a virus reactivated in my system. And the virus is just bad fatigue, pain and sweating. And it’s almost always activated by either stress or the slightest physical exertion. Ist hard not to feel really low.

Sounds like LC. It can come on up to 6 months after Covid l think.

Yes it’s really awful. No one can actually understand as the truth is no one without cfs/long Covid will ever experience the “fatigue”/pem symptoms, so it’s kind of impossible to explain to people.
My level sounds similar but a little worse than yours OP

Just over 2 years for me now and no end in sight. I have a good week then several bad ones. I feel guilty that I can't do what I used to with kids and noise and friends. I cancel social events regularly as its too much. Some days I can't get out of bed to take kids to school on ky days off.
My dh is amazing but it adds to the guilt and no one understands. I cry most days and feel pretty dam useless.
In some ways I am lucky I work pt 3 days a week and can usually do it but pay the price on the other days.
I'm seeing a physio with the post covid fatigue team who is giving very simple exercises to try and strengthen my legs again. Need a hysterectomy but due to piling on the weight as I can't do much without being exhausted I'm high bmi

Sorry this is such a pity post. Just so overwhelmed by it all

Its okay to pity post @Ewock , I feel the same.

My dh is also amazing, but then I feel so much guilt that I’m always trying to pay back whenever I have the smallest amount of energy. I’m stuck in a cycle.

I had a tough day yesterday, but managed to rest loads today. Sleep as much as possible, break it up by coming downstairs and interacting with family. Jigsaw with dd, tv prog with ds.

Dd is doing GCSEs at the moment, and I’m trying to just hold it together, present ok. I’ve found putting on make up and trying to look ok helps me. I desperately want to be ok so that she has the space to know her needs are supported.

Last year, I had treatment for an early stage, highly treatable breast cancer. A couple of minor ops and five days of radio. Those couple of months were the best I felt in the last two years. I could just not feel guilty and rest without feeling selfish. The treatment was nothing compared to the ongoing fatigue and PEM. With cancer, I had permission to be as ill as I felt. And I really recovered. Started exercising again. But then pushed it too much and here I am again.

And I don’t even feel like I have LC that badly; it’s just my responsibilities to my family and ill parents means that I’m slipping further and further down.

When this all started 2 years ago, it was episodic. I could go weeks feeling okay. But I haven’t had a couple of back to back good days since January. Stuff I could do only a matter of months ago seems impossible to me now.

If I could just avoid emotional stress, I really think I’d be able to turn things round a bit. But life just doesn’t allow for that right now. I keep trying to hold onto a belief in the future.

@LawrieForShepherdsBoy you need to take your foot off the pedal asap. What can you do to even out your effort every day, what things can you stop doing? Be really creative. My guess you’ll need at least 3/4 months break to start regaining your position a little bit

I’m down to bare minimum. The only things I am doing are things I have chosen to do - support those I love. The rest is just sleeping or lying still.

You’ve got rid of cooking tidying housework errands shopping?

Hello lovely people! I got lots of "thank you" emails on here. Bless you all. How are you doing? Before getting COVID,then being diagnosed with LC, I,was waiting for a uro/gynae appointment for a cystocele 16 months to be exact. Had had a CT after a year of pain, found a lesion on my kidney, told it was likely malignant. I was already under a dermatologist,so 4 separate consultants at this point. Pretty depressed, could hardly walk across the room,so breathless,that carried on some months. I started walking 15 minutes a day, increasing 15 minutes each time, bought a spirometer, levels were normal range for my age. Started doing breathing exercises (available online) although I have worked on respiratory wards all be it in the 80s. Some days, could hardly walk. This year had a bcc removed from my chest,2 inch margin either side,6 weeks recovery period, really painful! Then had my endocrinologist appointment,lesion benign, asked him to look up my cardiac echo (although at this point I thought it was likely ok otherwise I would have been notified before 6 months). He said I have the heart of a 25 year old no issues whatsoever (DH said let's hope the 25 year old doesn't want it back!) saw uro/gynae fitted with vaginal ring pessary. Unfortunately, I fell on wet grass and a slope Monday, falling on my back. Having to take analgesics is playing havoc with the hiatus hernia.Have gone back to taking high strength vit D all year, phobic about double washing hands ,etc. Year 4 into the COVIDENCE Study at Queen Mary's University.

Hey all. Too tired to respond to others. Hope you are well. Full on burn out crash at moment. I listened to an audiobook of a book I had read before and that has been brilliant. Keep boredom away but doesn’t matter when lose concentration or doze as roughly remember plot. Recommend. Thriller book, just junk but got me through yesterday. Want a vibrating pillow - don’t know why but feel that would help. Lots of pain but know it’s tension.

Four years in here. Since just before the first lockdown. I have to rest a lot. I have good days where I feel great, but even then i can't manage slopes, so if i take Ddog out up a slope I'm breathless. The doctor's surgery isn't interested. I've found that giving up (added) sugar has really helped me. Covid affects all the organs, and the gut, so that might be why. I watch a lot of videos on YouTube - there is an American doctor on there with advice about food. A friend who had a similar illness woke up one day after three years and was fine. So I'm hoping!

Well if they are the same thing then they will be the same but as always, each individual’s physical response will differ.

I’m so sorry about your fall on Monday @Nannyfannybanny .

I’m getting out of bed in a moment and going to wash and put make up on ready for teens getting home from school.

Managed to sleep til 11am then managed four hours of snoozing/stretching.

Pacing is so dull but it helps me to be mindful of what is important to me and really that is only my family.

Considering washing hair - but my shoulders and neck have seized up so much that I know I’ll just get pissed off being reminded if if try.

What a bloody pity party 🤦‍♀️😁