Anyone else caring for someone with long haul covid?

[Galaxxy]

As title! DP suffering dreadful post viral effects of COVID. The range of weird and debilitating symptoms are insane, ranging from being completely wiped out with fatigue to the point he can't even watch TV as its over stimulating, insomnia, tinnitus, breathing problems to name but a few. This had been going on since early March and the GP is less than helpful. Prior to this we would spend most weekends hiking, surfing, swimming and cycling. He now cannot walk further than the end of the road. It's really really hard, no one gets it, and I'm somewhat cracking up from the strain of not being able to really help at all. We can't even really chat properly because long conversations are so draining as the fatigue is so extreme. It's very difficult with the DC and I have to take them out constantly and it's had a massive effect on their home life. DP is doing everything he possibly can to help himself from diet, gentle yoga, supplements, alternative therapies, following all medical advice (which has been shit tbh). I don't know why I'm posting really. I have no one irl really to talk to about it as everyone has their own problems atm and I feel really alone. Our whole world changed overnight

No one?

I have no experience with this so can't help directly.

I wanted to say that you can't be alone. Can the hospital put you in touch with other people in your position? Could you create a support group to help yourself and others?

I really feel for you. I guess no one really understands the recovery yet. I really hope he gets better soon OP x

Hey, no personal experience but a friend has this and I know it’s been really hard.

Have you seen this website?
www.longcovid.org/

I’m caring for my (previously very healthy) 12 year old who came down with it mid March. At least I can do the worrying for him, it still hasn’t occurred to him that he may never be 100% again or back to lots of sport. Most of the time I’m able to be optimistic and remember how much better he is than back in April and May. But this morning I’m feeling quite overwhelmed by the last 5 months.

That sounds awful. How are you working?

Can I ask if he had a positive covid test? And since then, has he had any other tests from the GP to rule out any other underlying issue?

I sympathise totally, OP. I have long covid myself and live alone. I was in hospital in early April, after being ill at home for two weeks.
I’ve been left breathless at 100 yards, have fatigue and muscle aches, struggle to sleep for more than an hour at a time, and my chest keeps filling with secretions to the point I feel I’m drowning, and spend hours coughing and swallowing trying to clear it.
I was given a pulmonary angiogram 3 weeks ago, which showed covid induced damage to the blood vessels in my lungs.
The NHS is setting up covid rehab clinics to deal with the increasing numbers of us long haulers, but there is no cure as such. They focus ob physiotherapy, breathing exercises, trying to improve exercise tolerance etc.
Over the 5 months my lungs have got worse than when I was discharged from hospital, but I am managing to do a bit more self care. I can now do my own supermarket shop (a friend from church was doing my weekly food shop with her own and bringing it home for me) and I can cook and do slow hoovering. But I have had to hire a gardener- I can’t even mow the lawn, let alone dig borders.
This disease is relatively new, and we have no data on long term outcomes, but anecdotally, some patients are reporting gradual improvement in symptoms many months down the line, so do not give up hope. Encourage your DH to enjoy whatever he is still able to, even if that is just sunbathing in the garden or watching tv - it’s important to keep his spirits up as post viral depression can make recovery even slower.
If he does begin to improve, he should be careful to limit exercise and take things gradually, to avoid straining his heart or lungs and causing a relapse.
Your GP probably feels helpless, as they have nothing to offer, but you could certainly ask about covid rehab facilities in your area.
There are a couple of long covid threads on MN, where you can join others for a moan and some support, and I will certainly add you and your DH to my prayers for all of us in this horrible situation. May you both find the strength you need to keep going.

Spcampersaur oh my! Your poor DS. Its hard enough to see an adult go through this, let alone a child. I hope he continues to make progress.

There sadly is fuck all local support here (rural). I'm in a few facebook groups and dip in and out of the lungs thread on here as a lurker. A friend of mine is also going through it (and has mostly recovered now) so I do have someone I can check in with who understands, but I'm obviously weary of putting too much on him as he's still contending with the odd relapse and his own recovery journey.

Babdoc you have my sincere sympathies and thank you for the prayers. Sounds like you're going through the ringer too. I'm absolutely anguished today.

I am managing to work (PT for the summer holidays as I'd luckily booked lots of time off pre pandemic) but I literally leave him on the bench outside, lunch for everyone prepared, and he pretty much stays there until I come home, aside from heating some food up, bit of yoga and maybe one or two house tasks like folding washing
The kids are ferrel in this time! He does manage chunks of parenting and will sit and paint for a little while with them or supervise the odd thing. Luckily they're older children and teens so are managing OK with the bigger ones helping out a lot more than they should have to, but its all we can do to manage at the moment. It's really hard as we were such a team and split things very evenly. I know it's naughty moaning as it really isn't his fault but I definitely have to choke down waves of resentment at times as I am literally doing everything. Totally overwhelmed.

Gabriella no, he didn't have a test because you couldn't get one at the time. The actual symptoms during the 'active infection' were very mild, but hospital has said there is no doubt he had it as the post viral fatigue is so typical of many patients who are suffering the long term effects.

Thanks for letting me rant.

Apologies! The app ate my paragraphs!

Hello I’m not caring for anyone with the long term effects but I know a number of people who have had ongoing issues.
Has you DH had further tests and checks at hospital? One of my extended family has ongoing heart problems due to her bout of Covid and is being closely monitored as it damaged her heart muscles.
She is slowly regaining strength and they don’t think it’s a permanent damage.
Would you be able to push for some more check ups just to rule out similar?
It must be so hard for you too is there anyone could help you have a break or night away?
It’s such a random illness I had It but bounced back and I’m overweight and have asthma your DH sounds way fitter than me. I hope you can find someone else in a similar situation to chat to.

It's not the same, but you and DH may find it useful to check out how CFS sufferers manage as you may find tips or techniques that help him.
The only consolation is an improvement is possible.

For yourself, allow an hour of downtime each day and boost your vitamin intake. You can't pour from an empty cup. :-(

No real words of wisdom but just here to offer . Keep pushing the GP, I think they're going to have to offer more help eventually as the numbers with this condition increase.

All of this sounds terrifying

He has another GP appointment on Friday so we are gearing up to push for more help. We sat down last weekend and made a comprehensive list of everything. My cup is well and truly empty. Friends have quit visiting or even asking if we're OK because the answer is always 'no improvement', even though neither of us have complained much about it to other people. It's like our world has shrunk to the size of a peanut, with the added insult of having to hear people say that COVID is overreaction or conspiracy, that the under 60s aren't affected by it, or that DP's illness must be stress or hypochondria becaude he didn't have a test. I deeply miss out active, fulfilling life. I'm just wallowing today. I'm so tired and sad. I'll be better tomorrow though. I think I just needed to let it out as we've both been relentlessly attempting to stay positive, but really it's deeply shit.

So sorry to hear this. You're allowed to have a wallow now and then. Carers often get overlooked with any illness. Give yourself time to rest too. You sound amazingly strong. Good luck with the GP

Your DP is lucky to have you, you sound fantastic. You're doing brilliantly and it's ok for you to have an off day too. You're human.

It is shit, but people who are not bothering with you because of illness or denying reality because it suits their comfort have showed their true colours and although it's awful, you are better off without them and finding new, better friends.

He's not making it up, it's real. You know that. People who imply otherwise are in denial, a lot are at the moment.

Good luck with the GP. You have probably already seen this but just in case I'm including the link - maybe worth pressing the GP on access to this

www.england.nhs.uk/2020/07/nhs-to-launch-ground-breaking-online-covid-19-rehab-service/

So he's never had any blood tests? General stuff? Is he getting any better?

Seriously, what if he has something else? Covid could be a red herring.

Sometimes medics miss stuff.

Sorry you're having such a hard time.

Has your GP done any further investigating to see if it could be something else underlying rather than COVID? These are all symptoms of many other conditions - thyroid problems, cancers etc. I would think after being so fit & to take such a big drastic change is quite alarming

Not quite the same however I have chronic fatigue caused by a medical complication along with other symptoms but by far the worst is the fatigue - I spend 75% of my day in bed and some days am unable to get up at all, the rest sat in a chair.
I'm a single parent and this has been our life for 5 years now.
Things that have helped us :
Applying for pip (you have to have been ill for a while but worth looking into and getting things in order) it's not means tested either, this helped pay for a cleaner and gardener, mobility scooter so I can do school runs on good days,
I got professional grants from my union for a wheelchair and electric bed,
Referral to OT chronic fatigue specialist,
Referral to physio,
Moving items to right hight so no bending /lifting using less energy,
Applying for a blue badge (again need to have been disabled a while for this),
Councils aids and adaptions service can assess and supply equipment to help dp be as independent as possible, you can often refer yourself,
Depending on your dc age the young carers group in your area may help, they've been great for my dc, I referred them myself after talking with school,
If school age let school know so they can put things in place for them my eldest is able to access a place he can use his phone to check on me in the day to stop him worrying he very rarely rings but knowing that's available to him helps he can then concentrate on his work.

I'm afraid friends do disappear in times of need - not sure how you can resolve this one but most of mine fizzled out and I'm not sure I'd want to be friends with them now I was always there for them but unfortunately not vice versa.

Routines help us and also lowering our expectations. My life in lock down was no different to before except the dc were at home rather than school and my medical care got cancelled. It takes time but it becomes normal and on a day to day basis gets easier to cope with - until something crops up and you have a melt down.

You probably could do with talking to your gp and also the carers association to get support.

To get anything you need to be prepared to fight your corner, be aware you will have some frustrating times, I'm currently on week 54 of waiting for an operation covid hasn't helped but even in normal times there are frustrating waits. When you get to the top of a waiting list doesn't mean it's your turn it means your moved to another waiting list!

St John's ambulance and other charities will loan wheelchairs if you want to try and get out of the house.

It's not easy, it's a roller-coaster ride to the extreme you'll both need to seek support (if you work you may be able to access support through them). You'll probably no longer stress the little issues in life and you will really appreciate those that do help. 💐

There is nothing else. He's had blood tests glaore (all 'normal') chest xray (normal) and MRI is scheduled. The consultant we saw at the hospital says he has seen about 40 patients all presenting with the same range of symptoms, many previously healthy, some tested positive, some having displayed clear symptoms of COVID but no test, others, like my DP, having presented with mild COVID symptoms but still suffering these horrendous after effects. He described it as the body/immune system being inflamed, and believes it is repeatedly reacting to the 'ghost' of the active virus. Says there isn't a precedent for it but it looks similar to CFS or Lyme disease, but can't diagnose CFS as it's not quite been 6 months yet. Medics keep circling back to 'post viral fatigue', but can offer little in support other than sick notes and advice to rest and pace, and take vitamin D and eat well, stay hydrated.There aren't any support services in our area, nearest is 1hr30 away but he can't travel in a vehicle for longer than 20m without it exacerbating his symptoms for days after. If you look at the COVID long haul groups and the thread on here you'll see that this is not uncommon. He's been having zoom meetings with a counsellor through work who agrees that there's little 'wrong' with him ie the only stress or anxiety he has is because he's in a state of perpetual physical and neurological hell. Prior to this he had a great diet (it put mine to shame!) plenty of exercise (as in 7 days a week - he works in fitness industry as personal trainer/yoga/pilates teacher), great social life, no money worries, volunteered as a cycling instructor in schools, easy home life, a little work stress but nothing that he felt he wasn't coping with. I'm sorry if I sound defensive, but it's because I am. Any time I reach out for support outside people who have first hand experience I feel like I spend most of that time convincing people it's a real thing. It's undoubtedly COVID related in my mind, but obviously we are looking at everything we can. I'm really grateful for those who have responded. I'm just so tired and fed up. I have been for a walk though and going to bugger the housework tonight and just have a read.

Greengrapes I x-posted but thank you so much for your detailed and helpful reply. It was also very humbling after all my 'woe is me' moaning! I want to say sorry you're going through it, but it sounds wrong somehow. I hope you understand what I mean. Do you know what brought your CFS on?

God sorry on rereading I see that you did say what brought it on. Ignore that bit! I hope you get the operation you've been waiting for soon.

Me too Galaxxy
You have my utmost sympathy. It's hell for them and for us. My DP is French and we spent lockdown at my home in the UK. He went down with the commonest Covid symptoms mid March but many of them have remained in his system even though we both tested negative. The only thing that gives him some relief from the pain is physiotherapy which he had when he went back to France for three weeks. His lungs aren't damaged, thankfully but neurologically there are definitely some problems. The fatigue and sudden falling asleep, lack of attention span meaning he can't read or watch TV as he forgets what he as read/seen after a few moments etc and of course he is grumpier than normal. I keep an eye on a Long Covid Facebook Group and it's staggering how many are in this situation.

Sorry, I didn't need convincing it's real. Just wondered if they'd actually ruled out alternatives.

I'm in your DP's position and my DH is in yours. Thankfully our DDs are 11 and 8 and so are not in so much need of supervision but it's been very hard on my DH, who has also been WFH. We're really hoping that the girls will be back in school in September.

On a more encouraging note, I have been improving a bit the last couple of weeks. My flare-ups are becoming less frequent and I'm no longer getting high temperatures.

Like your DP, I'm mostly completely shattered. But I already had flu last year that led to pneumonia and I had CFS as a result. I also have PTSD, and my MH isn't great. But I'm feeling more optimistic than I've been in a while.

I'm so sorry you and your DP are going through what you are, I know how hard it is.

There should be a local Facebook support group for ME/CFS which I believe is the same thing as long Covid. ME is a post viral syndrome which can result from any virus, including COVID. It's a truly dreadful thing to suffer from with very little help available from the NHS and research into treatments has been criminally underfunded for decades.