Week 17 with long term Covid
Hello to anyone reading this, those I know and those I don’t.
Had Covid 19 now for 17 weeks (or suffering after effects of covid, how ever you want to word it.) Point is had/have Corona and it’s still kicking my arse.
So since my recent facebook update (after being pretty quiet on social media for a while) a couple of peeps have messaged me asking about my symptoms and stuff as (apart from the first 2-3 weeks) I haven't really gone into any detail I just sort of say 'having rough week' or 'things flared up again' etc etc. Without going into too much detail about anything specific. So for anyone interested, and because people have been curious and asking - and as you’ll see is far to detailed to explain person to person (and want to spread the word about long haulers as a lot of people struggling) So it’s just easier for me to have it in one place. For myself more then anything. And if you get anything out of it then that’s great.
Things are just starting to come out about long haulers in the media and on the news and I know people are interested to learn a bit more about it all. So while I’m having a not too bad a time last couple of days I’d thought it’s a good a time as any to go thru all my symptoms. Get them typed out for first time.
And maybe it will be helpful to someone who randomly comes across this post - (thou please don’t use as a guide), every case is different, a lot of similarities and cross overs , but ultimately different Just because someone you know might be having a rough couple of days or experiencing a couple of these symptoms it could be something completely unrelated to covid. (Make sure you check with your GP or call 111 if you think you have covid symptoms long term or otherwise.) I am not a Dr.
Here's a list of everything been going on with me over last 17 weeks. Some experiences have been completely new to me so very hard to explain , some descriptions may sound a little odd , but hopefully you get idea of what I mean! (Also sorry for any grammar mistakes....I dropped out of English A level)
Those who come across this and don’t know me personally know that while this is a (mostly) serious (but hopefully uplifting) post I’m very sarcastic and use dumb humour to deflect from how shit life is at the moment! :-)
So first thing of the bat I'll explain is I've realised in recent weeks it's been easier to think of it as good and bad days/weeks rather then getting better/worse
(as in first 10 or so weeks when I thought of it as 'it's getting better' and got in that positive mindset, the kickbacks have obviously beaten the piss out of me mentally as well as physically, as I've had about four big relapses now where I thought I'm on the right track, having a good couple of weeks then bam, I seem to go back to square one for no real apparent reason.
So when I say bad day I'm describing when everything amps/flares up again, A few more symptoms go up and the volumes up on high,and likewise a good day is when things seem to be moving in right direction again and I get a bit of a break.(So now I just appreciate them when they come and try make most out of them.) A good day isn’t a symptom free day by any means, it’s just better then the bad ones.
Chest
- Since the first evening it kicked of early March my chest has felt like a giant has had his hand around it - that’s non stop, constant (told you my explanations were weird.)
On the better days it's a very light grip I can get on and do things to a point, but I am always aware it's there. On a bad day it's grip tightens and he squeezes (or his fingers press into a couple of key areas - been pressing on my back a lot last few weeks.) - That’s been non stop and has not gone away since beginning. Thou I do believe its starting to ease a little.
- Chest pain - A shooting pain in my chest (slightly different from description above, feels more like its needles on inside of body. Thankfully these are uncommon, they pop up if I push myself a bit too far one day or if I’m having rougher week.(And it’s not heart related)
Lungs/Breathing
- Haven't felt like I've taken in a full lungful of air since beginning, I take a deep breath but only feels like I'm taking in 80- 85% ish (on a good day) 65- 75% ish (on a bad day) - This is week 17 numbers btw, take maybe 10-15% off when it was at worst. I think the best way I can describe it is it feels like there’s a filter or a sieve/strainer at top of lungs, on a good day there’s more spaces available to breathe thru (but still there’s a filter) and on a bad day more spaces close and I'm breathing thru less.
*Thankfully bar the first week where I had to get paramedic out, I haven't been gasping for air, I've certainly had to just lay and just concentrate on only breathing a few times because the filters have closed up a lot more (in the night mostly) especially where my bodies relaxed and I've woken and panicked short of air. Yes that’s as terrifying as it sounds.
- The air I do take in doesn't feel clean or fresh (best way I can describe it is when you go to a zoo and they have a indoor Rain Forrest/safari area .... very that lol)
That was constant the first 12 or so weeks (even when getting fresh air outside) thankfully that’s eased a little and not so prominent, still doesn't feel like I’m breathing in fresh air but its not so hot and stuffy and noticing the difference when I go outside now.
Throat/Mouth
- Burning/inflamed mouth - This is by far been the most uncomfortable/hardest for me to ignore and just get on with day to day stuff, from maybe week 6 to week 14 it was pretty much non stop burning mouth and throat
(Call my mum Khaleesi because I was spitting fire.)
Whole inside of my mouth and down my throat was just inflamed/swollen (felt like I had a golf ball stuck down there) and burning hot.
The last couple of weeks its eased I don’t wake up with it (unless i’m having a flare up/bad day) It's still very on/ off but thankfully not constant like it was. And have since learned that high histamine foods make it worse - same with my chest and few other things, (so choc, dairy, alcohol, fizzy drinks ...my diet essentially ) So have cut most of them down/out. Ice lollies have been my savior on hot throat days.
- Marble in throat - Another hard one to explain, it feels like there’s a marble sort of sized ball of phlegm that I constantly need to clear. (OK maybe not that hard to explain - also sorry for the gross imagery.) But not enough mucus coming up to warrant the feeling, it’s irritating more then anything - but a few weeks ago was probs golf ball sized, so again improvement!
- This sort of ties in with with the inflamed mouth, but the first thing to flare up on bad day is my tongue, feels tingly most of the time anyway but more so on a flare up/bad day.
- Same with my teeth / gums and the tingly sensation, (my teeth constantly feel like that sensation when you have some orange juice after brushing your teeth.) Sensitive/fuzzy I guess. Not particularly bothersome or concerning...just weird.
- This is probably one of newest ones, nose has felt hot(on and off)/bunged up for last few weeks. (But I know its not if that makes sense) I guess you could say same as lungs - not breathing in a full nose-full of air either. - sorry again for gross TMI but any mucus or boogers are clear (like almost see thru clear/never been cleaner clear)
- Phantom smells - A really odd one, I smell smoke and gas a lot, not just smell it, it feels like its in my nose and my mouth - especially smoke, almost like I’ve eaten it sometimes (non smoker in smoke free flat btw). Was a lot more prominent in first few weeks ,so much so that before I realised it was a symptom I had my carbon monoxide alarms checked because it was making me paranoid I could smell smoke/gas. A bizarre one for sure. Pops up randomly now and again.
Eyes
- Last couple of weeks have been getting bit of blurry vision and sore or dry eye , I'm already blind as shit so hard to tell in terms of blurriness how bad this one is, but def finding it harder to concentrate on one thing for too long (but that sort of ties in with brain fog - which i'll get to) but pretty sure once this is done with and I go to opticians will likely need a stronger prescription (some other long haulers who never had eye problems before are now having to wear glasses) No idea if that’s a permanent one but hopefully i’m at peak of it.
Ears
- My left ear has felt blocked pretty much since start (or like it needs to pop some days) Most the time I can ignore it but can be quite distracting if it kicks up a couple of dials.Which is likely why I get ear ache in same ear often as well.
*Also for most the things listed above it has always been worse on my left side of body, lung, eyes, ear, headaches.
- Tinnitus (correct word for ringing in ears right?) Usually kicks in early afternoon or on bad day. Varies on strength depending on the day I’m having.
Head/Brain
- Brain Fog - So the sort of very basic science behind this is because my lungs aren't producing enough oxygen my brain knows this, so is lending them some to help out...but because of this it means I’m experiencing what is known as brain fog (I don’t know what its actually called, likely has a better more official sounding name) - my concentration is very low, i’m finding it hard to retain things and concentrate more then usual. (not been up to reading or watching something new for month or so as I just cant focus on it) Also been getting odd words muddled or confused (but the bar wasn't the highest with me on that front ha ha)
Been dropping things when I think I have them in my hand. I do however think this is improving
(The fact that I have typed this out with just a couple short breaks so far is much better then two weeks ago when I couldn't even focus on a computer game for more then half a hour) so as my lungs improve so does this or vice versa on flare up. *Edit - This whole post has taken a couple of days to draft and type up, so not too bad in terms of needing breaks etc.
-I'm also constantly aware of my brain... like I can feel it all the time (I literally cant explain that any other way lol, I guess its just heavier at moment so I can feel it against my skull) best explanation I think you'll get from that one.
- Have a headache most the time (so much so that I sort of forget it’s there.) Thankfully most the time there mild/low and I can forget or distract myself but like everything else if I'm having a bad few days it goes up a notch. Likely connected to the brain fog.
Stomach and Lower abdomen
- Period pains - only way I can explain it, generally thought after nearly 10 years without them it was messing my body about so much I was getting phantom periods. (I’m a transgender man, 4+ years on testosterone, for anyone I don’t know who comes across this) been there done that, brought the t-shirt.. then sent it back because it wasn’t for me! Very strong and painful on and off for first eight weeks, get the odd twinge now and again but think that ones done with, thank the gods.
- Stomach Pains - Few aches and pains on /off, and recently experienced what felt like needle/stabbing pain for short while in short bursts - and I only really mention stomach because I haven't had the widely publicised 'covid shits' (yet, touch wood... or cloth) So yay!
Heart
- Palpitations - First 8 weeks was on and off most days to the point if I was sat still my heart would be palpitating. (I couldn't even sit and listen to music I enjoyed as it would make my heart go mad.) - When I do get the palpitations it sets most things off, so if palpitations do start I generally know I'm about to have rough couple of hours or days and can’t do much, for obvious safety reasons. Thankfully these have subsided a lot last 6 or so weeks. Still get them every few days but generally know whats setting me off and how to lower them down and they don’t last as long.
Hands and Feet
- Skin been very dry last couple of months, cracking and peeling on hands and feet (ew)
- Pins and needles/ numb fingers and toes - Get this a lot, obviously very normal stuff but just find them coming on a lot more (especially if i’m holding something like my ipad, phone or xbox controller for a while)
Fingers feel numb/puffy a lot too. (Likely also why I keep dropping things)
- Also to tie in with skin, have had a on /off spots on chest, face and shoulders for few weeks, they all came up at same time, not irritant or itchy or anything, just there.
General/Other weird things
- Voice - So this is one that frustrates me the most, I have had next to no voice for last maybe 10 weeks. I just cant chat to people at moment. For first 4 weeks wasn't to bad (I even started a youtube channel to keep me occupied and distracted) but slowly week by week it went a little bit more each time. I can talk for short periods of time if I have to/choose to ,like its not gone completely, but it kicks up all the things I mentioned in my throat and mouth directly after. If the phone rings I have to decide if it’s worth answering, in doing so knowing i’m going to have a rough day or so after. Someday’s I feel it's better then others like couple of weeks ago, chatted to my brothers online on xbox for half an hour or so for the first time in weeks, and caught up with a friend on phone for 10 minutes...but a couple of days later everything flared up again. So it's still trial and error and just being patient with my voice. (I'm quite confident no long term damage is being done now as few people in group i’m in reported there voice just eventually got better over time.) Definitely the symptom I’m having to be most patient with.
- Fatigue and tiredness - My days now are normally diddily done by 4-5, (except if its a bad day then most of the day is a write off) No matter how little or much I've done, by 5-6 my body and mind are exhausted.
As someone who has insomnia, pre covid I would maybe have 1-2 all nighters every ten or so days sprinkled in with 5-6 days of at most 3-4 hours sleep.
In the last 17 weeks I have had just 3 all nighters, and maybe just under ten 3-4 hour sleeps. Otherwise i’m getting at least 5+ hours a night. This is the one covid thing I'd like to keep please lol.
I think it's easing a little (most the bad night sleeps have been in last month) and on good days tiredness is kicking in a little later, or it's taking me a little longer to drift off. But generally am cream crackerd a lot of time, especially if I push myself too far on a bad day.
- Loss/Increased appetite - This sort of ties in with what I mentioned earlier about different foods causing set backs, the first 6 weeks I had no appetite and lost a bit of weight (I do put a lot of this down to extreme worry and stress thou)
Then I went thru a phase of being very hungry for a few weeks and put most of the weight I had lost back on. I'm somewhere in the middle now, probably because I know most of anything I eat will set me back a little (because as mentioned fussy git = high histamine diet) so i’m cutting portions (otherwise known as the amount of cheese I add to everything!) and cutting out all most junk food (you’ll never part me from my crisps!) and non healthy drinks.
- Bloated and dehydration - This one I sort of put in pencil because it could be covid related but I also think it could be side effects from the brown asthma inhaler I was prescribed to help with breathing. I’m still undecided as it pops up especially when I was using inhaler more but it does happen days after I’ve last used it. At it’s worse I was getting up to pee a lot! because I was thirsty all the time. So of course was just very bloated around the belly.
*Also talking of peeing, (Great segway Ben) number 1′s and 2′s have been very different then normal, urine thicker and bubbly,and smells/is coloured different, (same with 2′s) Also have a completely different body odour at the moment,(pungent) having to use deodorant twice as much as normal. - Admit it your life’s a little bit better now you know that information.
- THE HEAT! - I touched on this with my mouth and nose being on fire, but for the first 10-12 weeks I did not go a day where at least a couple of things were not burning hot ,like hot to the touch as well, not just inside...(very different experience then having a temperature). Extreme heat in one very specific part of body. Ears, forehead, cheeks, chest, back, nose, mouth,throat to name a few of prominent ones. Over time they have faded (if something does feel hot now its generally not hot to the touch anymore.) Maybe on a bad day a couple of things will burn up. (But in saying that, been calling today a good day but nose is quite hot) but point is its better.
- Mood swings/Anxiety - While i’m fairly confident anything emotional has stemmed from experiencing...well everything you've just read. Rather then it being its own symptom (thou I have had days of uncontrollable crying, days of anger..that perhaps outside of covid I would still of had one of those days but just not to such a extreme, I think with everything going on its just amped that emotion and anxiety up.) it's obviously been very stressful and anxiety inducing. That’s only calmed down in last week since finding the facebook group of other people going thru the same thing. I'm now seeing that people are slowly improving, i'm seeing I've not been going mad and it's all very real and not just happening to me. So the bad days are easier to deal with now and not hitting me emotionally like a ton of bricks anymore. I honestly couldn't see the end of the tunnel two weeks ago but can see it now (even if I take a step forward one day but then 2-3 back another...I see it still.)
*Mushy moment Alert - A good a place as any to include while I'm talking about emotion - Even thou she probs wont see this,but want to mention my mum. She’s been my rock thru all this, she messages me at least twice everyday without fail, since day 1. Even thou I know she's been worried sick about me herself, she's reassured and calmed me down on the harder more stressful days. I dread the mornings when things have gone downhill a bit and having to tell her ,because I know she'll worry, but after a few texts we both end up sort of reassuring and calming the other down. (especially in the earlier days when it was really bad, scary, new and unknown.) When it was really getting me down for a while and I wanted nothing to do with anything covid related and just stay in bed and pretend this wasn't happening to me, she dug out the articles and tips and things to help or give me a boost. (Not to mention all the coming and going she and my step dad have done for me last 4 months and taking care of my shopping for first 9 or so weeks...because I was a useless mess of a human) I know it’s basic mum stuff but this would be 10x harder and lonelier without her. Random detour I know but can’t talk about my covid experience and recovery without mentioning her.
Almost looking forward to sending her the first 'Everything normal today' text as much as I look forward to experiencing it....almost. ;-)
Amount of Symptoms On A Typical Day
On a good day - (when I think virus was at it's worse in the first 10-14 weeks) - 4-6 symptoms ( 2 or 3 cranked up to a medium or high otherwise on mild)
On a bad day - At peak/worse - 6-10 symptoms (throat, chest and no voice on high volume, maybe a couple of things like palpitations and brain fog, heat on medium/high, other weird stuff on mild/low)
Good day - Now 17 weeks in (excluding my voice which is still a medium to high issue most days) - 3-4 Symptoms on low to mild - usually there’s something still simmering on a medium always ready to turn up to a high if I push it too much in terms of walking or talking. (often my chest)
Bad Day (Now) - 4-7 Symptoms - 1 to 3 on medium (maybe a couple will kick up to high on first day of a flare up, but generally now for shorter periods of time.)Everything else on mild or low.
So there has def been improvement in last 6 weeks, i’m sure it wont all be plain sailing and I know/prepare to expect another 'flare up' and then a bad few days. But recently instead of the bad days being 2-3 weeks of it constantly, the duration is getting shorter each time (last bad few days was just under a week) So things are slowly improving, and i’m sure in time so will the amount of symptoms and the strength of each symptom.
I've probably missed a couple of silly/odd little things that have gone on (likely because they were so early on or very brief (or I’ve forgotten) - fever and nausea to name a couple. When I got my notes together these were the main ones that came to mind. Quite a lot actually sitting back reading them, and I think the scary (but good) thing is, x-ray came back fine, bloods came back fine. People have had MRI's, camera’s down there throat, most coming back fine. Covid just not showing up on any tests(unless someones suffered further complications with something) - hence why a lot of people struggling to be taken seriously by there GP's or even loved ones who think there just 'exaggerating’ or its just ‘anxiety and stress'...no living with all what you just read causes anxiety and stress Mary!
But yeah could waffle on, once its definitely gone and I breathe and look back I can perhaps get a better overview of everything and give you better analysis of all that’s gone on. I get asked 'so when do you think it will be gone?' almost as much as 'are you better now?' To the first question, meh I don't know, I'm now into month 4/week 17 (well month 5 if I include last couple of days of Feb when I believe I caught it and had the very mild cold early March) still a lot of things going on with my body, some new things could still pop up, so instead of saying 'I think it will be gone by..' ,like I did in the first weeks. I'm just taking it week by week (or day by day if it kicks up a notch) not making any big demands of myself or my body, doing what I can each day....but not pushing it. Instead of the sad, anxiety inducing thought 'when will it go' or the one all us long haulers worry about a lot ‘Will it ever go?’ I now try to think instead 'it will go!.'
To any fellow long haulers I say hang in there, keep fighting, trust your body and that it will get better. Take it day by day. Stay as positive as you can when everything 'flares up again' after a couple of weeks of good progress (easier said then done I know) but know it wont be forever as much as it feels like it is. Don’t be afraid to ask for help (I hate going to Drs would much rather just 'get on with it' , but from pestering a little I got a blue inhaler which has helped me a lot day to day,and had x-ray and blood tests which also put my mind at ease when they came back clear. So don’t be afraid to ask to get these things checked if you’re worried. I've been lucky with my GP's thou who I think have generally believed me and taken me seriously and I know not everyone is getting that help or respect. I think it’s really not helped us that in the early days people were stubbing their toes and thinking they had caught covid and calling their Dr’s (I’m exaggerating but hopefully you get my point lol), so if you do get a not so helpful interaction, be patient,explain yourself or try again with another Dr, remember a GP will only advise you symptom by symptom and not as a whole. Anyway I’m repeating stuff you already know by now lol.
Stay positive. Stay hopeful and stay safe.
To anyone else, believe us, know this is very real, and that it absolutely sucks. Its not just anxiety or in our head. We're not exaggerating - in fact most of us are probably playing it down or just not elaborating on things for an easy life and because when someone asks 'are you better now?' it's easier to just smile and nod and answer 'getting there slowly' because the truth is...well what you just read lol. (And I'm a particularly mild case...next to no coughing, no spells in A and E, a breeze for a lot of other people with long term)
Keep yourselves safe (most long haulers have no previous medical /problems/conditions. Some ,myself included, have weakened immune systems due to a long term health condition. A unlucky few are fighting another long term medical illness as well as covid. I'm lucky in that I have no dependants (except 4 easy to please gecko's) and was not working prior to catching it - some are having to deal with all this and be full time parents, or have been to and fro with their jobs (thinking there better then relapsing after going back). There’s mums messaging on behalf of there young kids who have it, lots of young people (one of the lads that co runs the group is 22 I believe), there's athletes/health fanatics used to running miles every day been completely knocked of there game unable to even walk to end of road some days. People of all age ranges. Point is anyone can catch it, it might not just be 'a couple of rough weeks' It might take over half a year for you to recover from. This myth that it's short and sweet, or a walk in the park if your young and healthy needs to be squashed because its just not accurate.
If not for my mum and our family and the facebook group I found, (Positive path of wellness - Covid UK Long Haulers) I'd be struggling, really struggling.
It's scary, brutal and lonely. I wouldn't wish it on anyone. The virus is still out there it has not gone.
Keep sanitising hands and wear a mask in busy places!. - Tell the guy who's life this has been for 17 weeks, why wearing a mask in public places, to keep yourself and others safe from catching this nightmare, is a inconvenience for you Karen...go on, I'll wait...
Maybe you can help prevent yours or someone else's next few months from being even worse. x
Was going to just make this a one time post on tumblr account but if it’s a help to anyone (especially fellow long haulers) I’ll post some other bits and bobs when i’m up to it. (thinking of doing a post about things/products etc that I think have been helping me. If that’s useful to anyone) Or just some positive/ funny things to keep spirits up. Keeping it all positive and upbeat as possible.
So I’ll see if anyone reads this first and go from there
So I guess in conclusion ...lol I’m just joking, this post is really done now, go back to your lives, this garbled mess of self woe (worlds smallest violin is back in its case now), sarcasm and naff humour has taken up far too much of all of our days already. Go peacefully amongst the things. :-)
