Covid plus brain injury: How have people coped with... - Headway

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Covid plus brain injury

Painting-girl profile image
32 Replies

How have people coped with this - any tips? Did you have any more fatigue problems afterwards or just revert back to your own normal? How did you manage to build yourself up again afterwards?

I'm full of bugs with it at the moment - feels like more than ' just a cold' to me ( now on day 8...)

Though have been musing that my friends have been messaging in and exclaiming about how awful it was and how washed out they were with it - but in some ways this feels like just another version of my own 'normal' - wonder if that's helping me to cope better than my 'neuro normal' friends? (Though as the Baron says, 'they don't understand'! )

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Painting-girl profile image
Painting-girl
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32 Replies
James1984 profile image
James1984

For me it exacerbates my BI symptoms, my fatigue, speech, left-side issues etc.

I slept A LOT more than usual, and I had issues with my breathing and waking up in the middle of the night gasping for breath. It was a horrible thing to have and I'm glad to be rid of it!

It definitely does give a bit of the experience of what people with a BI go through, though normal people will probably quickly forget and understand.

Painting-girl profile image
Painting-girl in reply to James1984

Yes, James, I seem to have been shifted back to an earlier point after the TBI with it. Bad fatigue and putting things in weird places again - no idea where my back door key is - based on past experience I really need to check the fridge again .....I remember a friend describing her brain fog with it a while back, and just saying 'welcome to my world ' - and her look of complete surprise

Glad to see some papers coming out mentioning MTBI and long Covid though and looking at the mechanisms causing them, would be good to see something constructive coming out of it on brain injuries.

DawnD123 profile image
DawnD123

absolutely exhausted most of the time and like you am unwell at the moment with an upper respiratory infection. I had to go for an X-ray a few days ago and am awaiting the results. It has triggered my asthma which I haven’t had problems with for a long time (usually triggered by an allergy to cats). I’m still working with vulnerable adults so I have to be careful that I don’t pass anything on although I suspect that is how I got the infection to start with.

Trying to keep positive as always.

Painting-girl profile image
Painting-girl in reply to DawnD123

Wishing you better too Dawn, that's rough about your asthma

Nafnaf87 profile image
Nafnaf87

GOOD morning Painting-girl

Got the Covid thing a couple of times, no idea where from, and as is usual with me just did my best to ignore 🤯 At the time everything was shut and nobody gave a monkey's anyway so as is usual there wasn't any point winding myself up about it.

Best advice is the usual, look after yourself as best you can and treat yourself well 😊

Best wishes

Michael

Painting-girl profile image
Painting-girl in reply to Nafnaf87

Thanks Michael

cat3 profile image
cat3

Hi Jen, sorry you're struggling. My grandson had Covid at 13 and was tired & poorly for months afterwards. And others I know are still tackling the effects of Long Covid.

All you can do is eat healthily, stay hydrated (especially during this heat) and take regular walks to for your physical & mental wellbeing. It takes time to purge nasty viruses from the system, and more so for those of us with compromised brains !

Force or frustration will probably just wear you out further, so be kind to yourself m'love.

💐Xx

Painting-girl profile image
Painting-girl in reply to cat3

Thank you Cat - good advice as always 😊 It's a shock to find myself feeling as I did back in the early days after the brain injury. I'm trying not to let myself read too much into this, with the concomitant worry that my fatigue might end up worse than it was pre Covid - and to accept that the virus needs time to get out of my system. I'm telling myself one day at a time, and that if I can reflect like this, then things aren't actually as bad as they were after the injury!

I've well trained myself to cope over these last few years to cope with fatigue at least! Will probably be happier when I feel like getting the paintbrushes out again 😊 Xx

cat3 profile image
cat3 in reply to Painting-girl

How long since you contracted the virus Jen ?

Painting-girl profile image
Painting-girl in reply to cat3

Just nine days ago Cat, not long in the scheme of things! X

cat3 profile image
cat3 in reply to Painting-girl

OK so not in the Long Covid category ...and no reason to believe it'll come to that. My nephew caught the virus last Christmas and passed it on, despite keeping apart, to his wife and two daughters. He and the girls recovered within a week but my niece (in-law) was poorly for almost a month.

My daughter caught it from my grandson and though she'd tested positive and felt 'fluey' she continued working from home and was lucky enough to shake it off in less than a week. So it's impossible to find reliable precedents isn't it.

Build yourself back up gradually with nourishing broths (chick peas are great for protein if you're not up to cooking meat ; I'm nigh on veggie anyway) plus lots of onion, celery, carrot, sweetcorn and other healthy stuff. And walk a little each day, if you have somewhere quiet, to build your strength back up.

Good grief I sound like a maiden aunt ! 🤶 But you know you're thought of and wished well m'love.... Xx

Painting-girl profile image
Painting-girl in reply to cat3

Oh thanks Cat, always good to have remainders, and I'd forgotten about chickpeas - good idea! Quite worried about how deconditioned I'm going to be after all this - annoyingly I was getting better at going for walks when this kicked in - back to square one again, still, can't be helped, it's kind of a universal experience nowadays... Interesting that there's no reliable way of knowing how long it'll go on for - sounds like I'll be somewhere in the middle... Still got a very thick line on the test, so just have to wait for it to get paler....

Good to hear from you 😊 xx

Fificakes2 profile image
Fificakes2

It made me really ill like a flu and my brain was so slow because of the fatigue and I remember the most frustrating thing was I couldn't hold a thought in my head and like an idea and people would talk to me, it was a very annoying part of extra fatigue. I hope that you stay just a bit worse than your normal, because it's so confusing when you have Covid.

Painting-girl profile image
Painting-girl in reply to Fificakes2

That's a good description F, glad I'm not imagining things, fatigue must be pretty bad from Covid, because if I'd rested this much before I had it, I would be feeling pretty well by now. Just need to sit it out unfortunately...

Fificakes2 profile image
Fificakes2 in reply to Painting-girl

Yes I always suffer from bad fatigue anyway and have to rest a lot, but I was literally out of bed for 4 hours in total during the day for at least 3 months. I mean I slept a lot and I got very weak. I hope that your journey is much quicker.

Painting-girl profile image
Painting-girl in reply to Fificakes2

Thanks F, fingers crossed here then. It is really weird having this much fatigue without having done something major to cause it. Deconditioning is a major worry for the future, because I always struggle to get back to my normal after a fatigue crash normally.

PurpleHal profile image
PurpleHal

I think it took a while for me to recover from Covid, but mainly related to the occasional asthma which it triggered, so no different to a regular respiratory infection for me, but probably the fatigue thing lingered for a few months afterwards.

Not related but actually I was just saying yesterday the headaches which I generally suffer from first thing in the mornings and sometimes evenings have seemed less the last couple of months, but then noticed a headache again last night, hopefully somehow by chance I'm managing my fatigue levels more successfully these days.

skydivesurvivor profile image
skydivesurvivor in reply to PurpleHal

suffered the same for 10 years, not Covid, the rain is possibly rewiring, pain is to let u know the grey matter is working in a new rather weird?! Way please report here y progress? This site I find very therapeutic!! Take care & text soon?!!

Painting-girl profile image
Painting-girl in reply to PurpleHal

Hi PH, sorry to hear about your asthma, but I can see why that would happen. Yes, I'm a bit worried by the fatigue thing and getting over yet another bout of deconditioning, I find that's hard enough after a fatigue crash.Glad your headaches have been reducing lately, sorry it triggered again last night. I think mine are definitely connected to fatigue. They were constant at first. But now they're definitely an early warning sign that I've been overdoing things - ignoring the first and second one, and not easing up, usually means they then just join up and don't go away - I can do so much more now than I was a year or so ago though ( or I could pre-Covid at least)

Writeronstack profile image
Writeronstack

So sorry you have got this infection PG - in terms of timing, I would say nine days is just over half way through, if you have been vaccinated, and this Covid is the post vaccination version.

Mine lasted about 16 days, and I was pretty much like you are - wondering the same things, really. The fatigue is horrible.

Paris Jazz on youtube running really low volume got me through. An hour at a time. That was my window for doing stuff like cooking and eating something nutritious. Chick Peas as suggested above is a really good idea. I bought chicken and made soup - carrots, onions, celery, and chicken, thyme and a bayleaf, plus salt and 8 peppercorns - boiled to perdition, and then thickened. Kept me going.

Lots of water - a bottle or a jug next to my bed helped, and one on the little table next to my chair. Gathering up the two glasses, washing them up, refilling the jug and the bottle and getting them ready for tomorrow was the last task of the day. Keep going - you are doing well.

Was saying to a friend yesterday that your academic and reading references were so useful right at the start. Also someone's (was it Cat's) definition of what is REST. I was just sitting down in the living room, and putting my feet up and calling that 'rest'. Learning that it was actually lying down in a darkened room, with eyes shut actually turned the corner for me.

So glad you are all here.

Painting-girl profile image
Painting-girl in reply to Writeronstack

Thanks W, yes fully vaccinated, not this year of course, but first ever bout of Covid. Chicken soup, lots of water and jazz sound like a good solution. Don't actually think I'm drinking enough. Line was faint yesterday, and I think things have improved, but I still feel surprisingly rubbish! Good to know it eases up after about 16 days - that's a good target to aim for. So glad things you've read on here helped. It's such a strange world we suddenly find ourselves in, isn't it? At least a setback like Covid lets me see that actually I've made great progress, even in the last couple of years, in terms of putting a decent life back together post concussion. Bit shocked to realise I'm just at my five year anniversary this month. But proud that I have a nice life, if really quite different to what I would have imagined before. I think the best thing has been making friends that didn't know the old me, and still coping socially ( though to be fair, other painters don't talk that much either - probably helps!)

I'm jolly glad to see that the long Covid research and discussions look like they're going to make connections with brain injury sequelae - I noticed one article that speculated that long Covid was possibly caused by autonomic dysfunction - so definitely in MTBI territory.

Fificakes2 profile image
Fificakes2 in reply to Painting-girl

What does MTBI mean?

Painting-girl profile image
Painting-girl in reply to Fificakes2

Hi F, sorry shouldn't use acronyms - mild traumatic brain injury - the mild is misleading - it just means it's not severe enough to kill you. Mine was mild - just a bit of post traumatic amnesia as a giveaway - and five years on I still have problems....

Fificakes2 profile image
Fificakes2 in reply to Painting-girl

Thanks for explaining but that doesn't make sense. Mild must be mild, than not dead, there is a scale as it gets worse. I know people very much worse, not able to speak properly.

I've got a severe traumatic brain injury and it's actually, I'm too tired to explain but being dead was a very real possibility for a long time when I was in a coma, so you shouldn't say that. It doesn't matter, I'm going to leave this site, it's not right for me.

Painting-girl profile image
Painting-girl in reply to Fificakes2

Sorry Fificakes, severe brain injury is truly terrible for anyone and their families to live though, and I know there are people on here coping with much larger problems than me. My point was that people with 'concussion' or MTBI like me, can in some cases, without it ever being life threatening, still be affected by the brain injury for many years - so to us the way it is labelled as 'Mild' seems odd because for instance I haven't been able to go back to my old job, and I live a very different existence to my pre brain injury self, still noise and light sensitive, random short term memory, insomnia, headaches ( far less now) the dratted fatigue.. in short, the same old list as many here. Reading other people's accounts on here and talking to the Headway helpline helped me to reach acceptance that months of therapy on insurance hadn't quite got me to. The Mayo scale for brain injury is slightly different and I was classed as mild to moderate on that.

Writeronstack profile image
Writeronstack

As you say, its a strange world you find yourself in. Yes, I too had time to think how very fortunate I am to have a supportive family - and also that it is worth putting some version of one's life back together - I look at you and one or two others. . . and really feel uplifted.

Today was a rubbish day. Trying to get a meal on the table - very simple, with alarms for each step. So the alarm has gone off - everything out of the oven. Hope went in - I am keeping everything crossed that despair doesn't come out :)

As I said - thank you all for being there.

Painting-girl profile image
Painting-girl in reply to Writeronstack

Hope supper was ok. My cooking went to pieces after the accident. I don't know if it's the same for everyone, but now the sequence I do things in can be very odd, but I don't beat myself up about it, I just note that I'm be being a bit odd, smile to myself at the funny way I do things now, and just carry on. Seems to work! I had a time early on when I had to cook one item at a time, or I got in a complete muddle, so dinner was always lukewarm, but have definitely improved since then. Cooked a stew tonight with lots of veg tonight, which is an improvement on my week!

Writeronstack profile image
Writeronstack

Yes, it all went okay, thanks for asking.

I am still at the stage of lukewarm dinners. Just getting the hang of putting things in the microwave a bit before I serve, so it's not too bad.

Pie was okay, (but I had pre-done the filling) as were the potatoes - veg was not top notch, but hey, overall, better than no dinner.

Getting in a complete muddle has been the problem for the last few days.

Headache is still there as a sort of 'aftermath feeling'. Fatigue a bit better. Got up at 9 am, which is an improvement. Some pie remaining so not too much hassle tonight.

If I have an 'odd sequence' phase coming up, where dinner is not lukewarm, I will consider it massive progress. :) Just by posting it here, you've improved my life - trailblazing on the quiet, with Covid - how cool is that?

Stew with veg last night sounds fantastic. I hope you made lots, and won't have to do anything more onerous than cut a hunk of bread to go with it.

Keep going PG. You are getting there.

Painting-girl profile image
Painting-girl in reply to Writeronstack

Sounds cool W 😊 - you did great to do pie and veg and potatoes - using the microwave at the end, is a really good idea actually.I have discovered traybake-type dinners where I put the meat / fish on a baking tray with sliced up potatoes and veg to roast in the oven for half an hour (with the plus that if I use tinfoil on the roasting tin, there no pans to wash up either 😊)

But overall I've got a lot better at simple cooking than I was at first - and when I feel ok, I try and put some batches of food in the freezer ready for bad fatigue days. This last takes a bit of planning, because if I cook a large amount when I'm tired and it goes wrong I've got to eat it again and again..........😱. But seriously it's great, if I want to go off and do something and I'll be tired afterwards, having something nice and quick defrosting in the fridge is seriously comforting. I got some batch cooking books out of the library for ideas and then bought my favourite one secondhand online. (My sister did suggest I use a slow cooker too, but I haven't done that yet.) My early attempts following recipes were incredibly slow, because I'd read something in the book and then have to go back and check it several times because I wouldn't remember - that's got a lot easier.

I still can't have the radio on while I cook - and I always used to do that. Which is a shame, but I'd rather just eat nice food than get really confused trying to cook with the radio on...

I'm now experimenting occasionally with really familiar old playlists because I think they're easier to have as background music than the radio....

I am totally just having a hunk of bread with that stew tonight! 👍 And hot dinners will come your way soon xx

Writeronstack profile image
Writeronstack

Since this has degenerated to cooking, PG - I made soup with celeriac - enough to freeze. Getting there. Nice to hear the steps.

Might freeze some, great idea.

No, I can't have anyone speak to me almost, when I cook. Never mind the radio.

This morning I dared to get the sewing machine out and actually repaired a pair of trousers, and washed them. . . . hanging up now.

But again feel somewhat exhausted. Keeping still for the moment.

On slow cookers, it is a great idea. I hav one. The bowl capacity is so big that there is much scope for freezing - similarly, pressure cooker. Today's soup was done in 15 mintues in a pressure cooker. Ran away as soon as it made a noise, and waited for the designated 15 minutes - put in ear plugs and turned it off. Then opened it after 15 minutes - liquidised. Hurray.

Batch cooking books out of the library sounds like a good idea - hadn't realised there were such things.

Best

Painting-girl profile image
Painting-girl in reply to Writeronstack

That's cool that you got your trousers done, I do like a win! Sorry you're tired again though, certainly know that feeling. Covid bless it, has sent me back into only having one aim a day. Pressure cooker sounds great. And keeping still is exactly the right thing to do. Interesting that we're the same on needing quiet to cook. Early on, I didn't cook anything I had been making more recently, only stuff I cooked years ago, memory was obv a bit random at that point.Yes batch cooking is totally a thing nowadays, I had no idea. I put everything into single portions- very reassuring to have in the freezer, and I hope a bit more balanced nutrition wise. Look up The Batch Lady online as a start. I think she also does a thing where you prep everything into one freezer container to just tip into a slow cooker later. I can't do her thing of cooking several recipes in one go though! I have to adapt that. I find planning to cook once when I'm feeling good is a great plan for eating better overall later (otherwise it's eggs - scrambled egg in the microwave as a last resort...) I haven't been managing batch cooking so much lately, as pre Covid I was coping quite well, most of the time I was okish cooking as I went along, which obviously was quite an improvement. Time to dig out the recipes again for me I think! Actually talking about it, I've just remembered that all the batch recipe books have biscuits and cakes in them too 😊

Sorry you're still finding your way, but it sounds like you are on the right track x

Writeronstack profile image
Writeronstack

Thanks so much - off to the batch lady on youtube....

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