@Steve,

I think i made the right choice as well, as soon as i found out about of the death of the Queen i contacted the ticket agents and explained why i felt i couldn't attend the concert... i knew that when i booked the tickets they were non-refundable and that i ran the risk of not getting a refund... i even took out additional insurance that wouid cover me in case of some other unforseen circumstance (another Covid outbreak etc).

What didn't sit well with me was that the concert was a complete sell-out and they could easily have resold the tickets if they wanted too, i'd have paid a percentage for them to do that but they refused to even consider it.

My understanding is that under current UK legislation if i was to resell the tickets, even if they were below market value, i'd be considered a ticket tout and breaking the law so i decided to just let the seats remain empty.

When i bought the tickets i fully understood that something like this might happen so i have no regrets, but still, it doesn't sit well that my tickets could have been sold onto someone else that helped reduce my losses.

This whole pandemic has been a perfect storm, for me.

That sucks. Ticket resales are a real problem here in the US.

_________________
stephen boots
Microsoft MVP 2004 - 2020
"Life's always an adventure with computers!"

It was/is what it was and i knew there was a risk that might happen so it doesn't bother me.

I used to let Covid get me down but as the years have passed i'm sort of coming to terms with it, i'm not happy with it but i am beginning to learn to live with it... maybe it's my age...

Carpenters - Rainy Days And Mondays
https://youtu.be/PjFoQxjgbrs

For some odd reason videos such as that, which i can only assume are upscaled? Gives me hope to hang on and continue fighting.

I can't quite work out why it means so much to me, maybe it's because it's no longer in 240p format, maybe it's because its future proofed at a time when i need to know that the world isn't about to collapse.

Whatever the reason, i guess you had to have lived in that era.

So, i had the last of my current therapy sessions tonight and i'm cautiously optomistic that i'm finally free of this godforsaken virus. While i'm not convinced the therapy actually helped me i am open to the fact that it might have... for 10 days now (nights would be a better description but it'd look odd in text) my sleep pattern has returned to what i would consider normal, sleeping for 7 to 8 hours at night and falling asleep on the couch in front of the TV, or on my PC, if i don't go to bed when i'm exhausted... in other words, the 10-14 hour disjointed sleep patterns and insomnia have apparently ended and i'm falling asleep around 11pm or 12pm every night whether i want to or not.

It's still too early to fully accept that somehow my sleep pattern has made a permanent shift back to normal but i'm quietly confident it has simply because this is by far the longest my sleep pattern has been anything like normal for such a long period of time (2 and a half years!!)... it's even more remarkable that whatever has changed it has NOT been supplemented or involved medication.

I don't feel like there was any one thing that this therapy gave me that triggered something like it did with the PTSD therapy, but at the same time i can't rule out that this course of therapy didn't sublimely trigger a response, likewise i can't rule out that this might have happened without the therapy.

Whatever has happened i'm over the moon with it so far and i hope it continues.
My plan if this is panning out in the way i hope it is, is too first give it time to make sure it's real.... enjoy getting out and about over the holiday season, maybe extend that through January, and in February (if not sooner) get back into work.

One thing i have learnt in the past few days now is that i finally have the confidence to get out and go places... walking and driving i wrote off due to lack of confidence that if i get somewhere how would i get home again if i physically couldn't... is that i'm extremely shaky on my legs, probably due to muscle wastage and lack of exercise but the good news is i can work on that and it shouldn't be a barrier to getting back to work if i look for a job that doesn't require physical work.
It'll be low paid but at least it will be work and any kind of income right now will be better than the no income i have now.

Fingers crossed and onwards an upwards!

Doddie, it sounds like you are finally on the road to recovery...good for you. Hopefully happy days now await you.

The U.S. newspapers and TV news are starting to talk about the millions of Americans affected by long-Covid. Most are older adults, according to the CDC.

_________________
BB
http://barrypatch.net

Glad to read the good news!

_________________
stephen boots
Microsoft MVP 2004 - 2020
"Life's always an adventure with computers!"

Glad to hear you have some good news at last, it has been a long time coming.

_________________
Joan Archer
http://crossstitcher.webs.com

Barry, thank you for the kind words... the reality with hindsight has been that as soon as i was infected by Covid i've been on a road to recovery... one that i'm now quietly confident i've reached the end of but only time will tell if that's actually true. The harsh reality is no-one knows what the long term effects of Covid or Long Covid might be so for me it's a waiting game, but at least I believe finally that i'm in a position to try and rebuild my life.

As for the mainstream media and the CDC in the US, NHS in the UK etc, do your own research for the truth... the mainstream media especially seems to be fixated on certain numbers that are Beta and Delta variant specific.... that women and older people are only afflicted by Omicron induced Long Covid... that is simply not true.... people of any age age are still being struck down by long term Long Covid no matter the age group or sex.
Statistically it is true that the numbers point to older people being affected with the numbers pointing to it affecting more women than men but the difference is not huge... young men and male children are being afflicted every day by the Omicron variant.... my understanding is between 3 and 5% of all infections will go on to develop Long Covid
That's down from the original vairant which was estimated to be 10-30% but it's still significant numbers.

The media and medical organisations all over the world have been woeful in support of humanity with this virus, the CDC, NHS, WHO, etc should be be doing a walk of shame... millions died and many more millions have suffered and that number grows by the day... it should and could have been prevented but even to this day they obfuscate the truth... in the name of what is a huge question i'm tempted to get into but it's best i don't... not on this Forum.

If you've read all of my posts about Long Covid you'll almost certainly have come across one or two where i mention the track "Pink Floyd - Comforably Numb", it pretty much summed up how i felt when i was at my sickest but what you might not know is why, so in this post i'll try and put that into words.

Tonight i found a version by David Gilmour (ex-Pink Floyd guitarist) performing the song in Pompeii and it really struck a chord with me, i'm not really sure how to describe it other than the lyrics and the light show during the concert really says it all, the only way to explain it is to go through the lyrics line by line.

David Gilmour - Comfortably Numb (Live At Pompeii)
https://youtu.be/eHKG7EMxWW8

The lyrics in black are the original, any other colour is my interjection.

I caught the original Wuhan strain in Feb 2020, Aug 2020 my health went off a cliff.

Hello? Hello? Hello?

Internally i knew something was very wrong so i went to my doctor

Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?
Come on now

At the medical practice

I hear you're feeling down.
Well I can ease your pain
Get you on your feet again.
Relax.
I'll need some information first.
Just the basic facts.
Can you show me where it hurts?

After various tests the medics had no idea what was happening to me because all the results came back as normal, in the meantime i could feel the life slipping out of me.

There is no pain you are receding

The medics didn't say it exactly like that, they didn't have a clue what was happening, but i knew i was receding

A distant ship smoke on the horizon.
You are only coming through in waves.

That was exactly what brain fog felt like for me, i was distanced from myself and my brain only worked when it could, it was truly terrifying.

Your lips move but I can't hear what you're saying.

For a period of time my wife would talk to me and while i understood what she said, i simply couldn't reply to her, my brain didn't or couldn't send the signal to my voicebox and that was truly horrifying because at the time i truly believed i might be like that for the rest of my life.

When I was a child I had a fever
My hands felt just like two balloons.
Now I've got that feeling once again

When you are a young child you rely on elders and betters to take care of you, this was exactly how i felt, i truly believed i could get help from the healthcare system but quickly realised i was on my own because they had no idea what was happening, so i was on my own.

I can't explain you would not understand
This is not how I am.
I have become comfortably numb.

Trying to explain what was happening to me was incredibly difficult for me to do given the brain fog etc, but i knew i had too try, and somehow find a way... i basically had to learn a whole new language, not a spoken lanuage but one that doctors speak, so i spent months pouring over medical papers about Covid-19 and Long Covid, using a search engine to understand what they were talking about.

O.K.
Just a little pinprick.
There'll be no more, ah!
But you may feel a little sick.
Can you stand up?
I do believe it's working, good.
That'll keep you going through the show
Come on it's time to go.

That for me encapsulates my first vaccine shot, so many of my symptoms disappeared after a couple of days but i was in a tiny minority of i think 5-10% of Long Covid sufferers who got that relief after a vaccine shot... yes, i got lucky.

There is no pain you are receding
A distant ship, smoke on the horizon.
You are only coming through in waves.
Your lips move but I can't hear what you're saying.
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye.
I turned to look but it was gone
I cannot put my finger on it now
The child is grown,
The dream is gone.
I have become comfortably numb.

<End>

At circa 3:20 the performanece moves into a laser light show, an effect that for me reflects where my brain was at the time of brain fog.
At circa 4:29 the lasers change into a jumbled mess that for me reflects my neural pathways trying to find a way to reconnect post vaccine.
The music during this phase was what i was living, don't get that wrong, i wasn't angry or anything like that, but i was very frustrated that i couldn't find words or form a sentence that i knew i should know.
Then at around 6:20 the lasers suddenly align, that happened to me as well as i was continuing to recover... not from the virus at this point, more from the mental impact of what i'd been through... a light bulb moment during my PTSD therapy had a huge impact.
Circa 7:07, what previously looked like a giant needle now looks like its my brain becoming whole again.

The irony is my wife bought me a framed copy of Comfortably Numb lyrics for christmas 2019, neither of us had any idea what was about to unfold a couple of months later.

<edited to include the YT link>

Thanks for sharing that, Doddie.

_________________
stephen boots
Microsoft MVP 2004 - 2020
"Life's always an adventure with computers!"

More than half of long Covid sufferers unable to work after two years: UWV
https://www.dutchnews.nl/news/2023/03/more-than-half-of-long-covid-sufferers-unable-to-work-after-two-years-uwv/

Another Dutch article, this one about the Dutch trade unions and their claim for health worker compensation for their loss of pay and/or benefits... in effect claiming it was a work related illness.

I have no issue with health worker unions fighting for compensation for their members, if anyone deserves that then they are the people to get it.

What i have an issue with is what happened to me in the UK, i claimed for benefits while i couldn't work and was flat out told i didn't qualify... i was a trade union member at the time and they also said there was nothing they could do... two and a half years later i've not earned a penny and the state has not given me a penny... the whole system is in complete denial that i need, or needed help... it's disgusting that this has happened to me,.. i wanted to work but i couldn't and the so called welfare state that is supposed to be in place to help people like me simply turned its back on me and told me to <enter expletive> off.

Westminster wanted to have nothing to do with me, the Scottish parliament in Holyrood wanted to have nothing to do with me, my trade union didn't want to have anything to do with me, even my local health authority wanted to have nothing to do with me...

Thank god i found a Doctor who cared and was able to refer me to others who cared just as much.

Sadly, I've read more and more accounts of the same for sufferers of Long COVID. I'm glad that you finally found a good, caring Doctor, too.

_________________
stephen boots
Microsoft MVP 2004 - 2020
"Life's always an adventure with computers!"

I previously mentioned that as part of my 'treatment' i was assigned a Link Worker by my medical practice and a few of you asked what that was... at the time the medical practice didn't have a page on their website that explained what one was so i had too try my best to describe what my understanding of that role involved.

The practice website now has a page that explains the role of a Link Worker, so i thought i'd share it:

How a Community Link Worker can help you…
https://www.westerhailesmedicalpractice.co.uk/clinics-and-services/community-link-worker/

When i was assigned my Link Worker her role far exceeded the role that you see on the website today, presumably because everyone including the medical practice was in lockdown but it gives an interesting insight into what they normally do, and as i previously mentioned in this thread what they can also do during times of medical 'emergency'.
e.g. I never met my Link Worker in person, everything was done over the phone but she was a vital point of contact so i was fast tracked to speak to a GP during a period when i was barely able to function without which i don't know what would have happened to me.

Full disclosure: I've been private messaging Steve (sboots) on and off for the last few months because i didn't want my topics to move into the realm of anti-vaxing or conspiracy theory.

That said, i think a wider discussion may now be needed that might be having an influence on me and many others like me.

What follows just might explain why i'm having trouble with symptoms that i thought were in the past.

i.e. Aside from my wife and close family no-one knows that i still haven't returned to the workplace, to do so has been impossible despite many people telling me i need to get off my backside and just do it... well, it's hard to get off your backside and hold down a job if you can't even rely on waking up to go the job... even harder if you can't wake up to get off your backside to go for a job interview that no matter how hard you try to regiment your life so you can, only to find you simply can't.

In the past week or so i found the following about which is in pre-print from Yale University etc....

New syndrome
https://youtu.be/-UJqhG1I7tY?si=lky_DjQtMFGcuqdO

Post-Vaccination Syndrome: A Descriptive Analysis of Reported Symptoms and Patient Experiences After Covid-19 Immunization
https://www.medrxiv.org/content/10.1101/2023.11.09.23298266v1
Paper in PDF format: https://www.medrxiv.org/content/10.1101/2023.11.09.23298266v1.full.pdf

I have no idea if my continued altered sleep pattern, lack of appetite and lack of energy and willingness to do anything has anything to with the above... i also have no idea if my lack of esteem and lack of whether i care if i live or not has anything to do with the above... physically all i know is in recent months i've had a lump grow on my right wrist and ademas from the knee down on both legs.

The irony would be that the vaccine shot i had in 2021 that i thought had cleared Long Covid from my system might now have caused a whole new syndrome.

After watching the video from Dr John Campbell i immediately reached out to my medical practice but it looks like i'm going to have to wait 3 weeks to see the GP who i dealt with for Long Covid... in no way do i want to see a GP who knows nothing about my history because that didn't go well for me at the start of the pandemic.

It goes without saying that this is all conjecture but if my experience is anything to go by then there is probably something in it and to ignore it would probably be folly given that the medical community is as clueless as i am.

(Note: I wanted to post this yesterday but it somehow didn't go through.)

Hi! I met Doddie in another community where he mentioned his struggle with long covid. He kindly referred me here if I wanted to find out more about his experience. I have this condition myself but I don't know anyone else IRL, so I often feel alone and misunderstood. I don't wish LC for anyone, but I must admit that I was kind of glad to have found someone else. Someone who understands.

Firstly, I want to say that I smiled when I saw this forum because I'm old school and I don't use social media. I prefer this kind of conversation because it feels more structured. I was quite active on forums in the early 2000's so it brings back memories. However, I love how friendly this place actually is. It's rare to find a community where people don't argue (immaturely), judge or make fun of others.

Anyway, I would like to share a bit of my own experience and perhaps comment on some of the posts along the way. I apologise if I've misunderstood or overlooked anything important.

I tested positive for Covid in early February 2022 (Doddie, I miscalculated the year in the other thread). I contracted the virus (probably Omicron variant) at my workplace which still makes me a bit angry because the employers didn't really care about security measures. So several coworkers also got Covid, but I'm the only one to have longterm consequences. I didn't expect any serious consequences because I'm relatively young (36) and I took two vaccine shots before getting infected.

My symptoms were/are a bit (if not quite) different from Doddie's. It's interesting how unique everyones' journey is. I'll try to give a rough timeline of how the illness progressed.

Feb 22'
First several days were just like a common flu and I felt fine afterwards. It went downward after about 10 days when I no longer tested positive on rapid test. I was tired like never before in my whole life. I felt dizzy and extremely weak. I was in bed most of the time because even sitting was tiring. My chest and muscles hurt. I coughed a lot. I had very short breath after climbing the stairs from first to second floor. I was sweating A LOT. I got a mild case of rash on my chest. My voice was husky and weak.
I gradually started some short distance walks but they gave me stabbing pain in my chest.
I tried working from home for a week (with laptop in bed) but then my employer said that it would be better if I went back on sick leave to fully recover ("full recovery" sounds a bit ironic now).

Mar
Sometime in March I returned to work. It was hard but I somehow managed it - I work on computer and I was only employed for 30-hour week at the time. I was annoying coworkers with my persistent cough. It was gradually getting better. It never got like it was before but I was functioning. At that time cognitive symptoms like brain fog and lack of focus started to show.

Apr
I thought I was quite better. I don't remember having any pain.

May
1st relapse, 2nd sick leave. Flu-like symptoms, painful chest, dizziness...

Aug
3rd sick leave.

Sep
4th sick leave.

Dec
5th sick leave. It was worse than previous months, I could hardly function for about a month. I was prescribed painkillers for chest pain. Holiday socialising was quite a struggle because I was extremely tired. Relatives visited (I didn't have to go anywhere) and they helped with Christmas cooking so I could take some rest if I wanted. However, I felt embarrassed because I couldn't focus on conversations or playing board games.

Other months in between
There was a pattern - every month I would have some symptoms for about one week (chest pain, sore muscles, weakness, cough, dizziness brain fog...). The rest of the month was more or less normal. Employers extended my contract in autumn and I felt well enough to start working 40 hours per week.
Every single time I got better I was happily thinking: Yay, it's over! It took me a long time to accept that it's chronic.

Exactly a year ago, my doctor finally referred me to LC clinic (I had no idea it even existed). They listened to me and took me seriously. Told me that there is a lot of similar cases. Sent me to take more tests. As on previous tests, everything looked perfectly normal. I know I should feel relief if tests are ok, but I don't have any "black on white" proof to show that anything is wrong with me physically. So frustrating!
At the clinic they admitted that they don't know much about LC and that there isn't any cure. They gave me unhelpful advice like "exercise more". Told me to come back if it got worse but I'm just so tired of all the doctor appointments and tests that I started to avoid those if possible (the outcome is always the same).

Jan 23'
No improvement, I couldn't tell my employer when I would be able to return to work. We agreed to try working from home for a while (otherwise they would need to find someone else to do my work). CEO usually doesn't allow working from home but I have a good boss who trusts me because he knows that I'm honest and hardworking.

Mar
We (my partner and I, we don't have kids) adopted a puppy. It was (and often still is) a struggle to juggle an energetic dog, full time job and basic household chores when you're in pain and tired all the time. That being said, I think it helps that I have a responsibility that includes daily walks to a nearby forest. I doubt that I would do it otherwise. Some time our walks are super short, sometimes a bit longer - I believe some walking and fresh air are beneficial. I often have to take a nap after a walk. I still can't imagine running or working out like I did before.

Today
I still work from home. Also in the evenings and weekends because I often need longer breaks. I feel thankful to have the ability to work on a flexible schedule. I hope they will allow me to work remotely as long as I don't get better.

Symptoms I had in the last week
chest pain - In 2023, I had pain in my chest every single day (which is far more often then a year before). It ranges anywhere from mild to moderately severe, but I usually don't need to take painkillers. The pain isn't all of the time - it comes and goes during the day. It usually feels like stabbing in the lungs. Sometimes it feels like tightness around my chest.
dizziness, even while sitting
dry cough
joint and muscle pain - Sometimes it feels like sore muscles, this time it's like when you have a flu. Yesterday muscles in my legs kind of throbbed and involuntarily moved several times (I don't know how it's called).
shortness of breath, mild
feeling very tired and weak
sweating at night - a lot, often with a kind of "releasing toxins" smell
cognitive problems like brain fog, trouble concentrating, poor memory, forgetfulness, trouble remembering words and completing sentences - like there is a switch in my brain that suddenly goes off and I can't recall what I was saying or doing...

Summa summarum: I can function. But it's hard. I try to take it day by day, hour by hour. Some days I can do more, some less. My brain is getting foggy ATM, so I'm going to wrap up this post for now (it took me all day to write it and several days to go through this thread). It felt good to talk about it. I don't believe I could do it if I wasn't on vacation this week.

Take care,
Masha

Hello, Masha and welcome to the forum. Thank you for sharing your experience here. I am sorry that you and others are dealing with the long term consequences of this damn virus and the shortcomings of governments, science, and the attitudes of many people.

_________________
stephen boots
Microsoft MVP 2004 - 2020
"Life's always an adventure with computers!"

Masha.

_________________

Hi Masha, nice to see you here and that you managed to resolve the posting and avatar issues you had yesterday

Actually I wouldn't mind seeing another thread started about the posting issue so I can check it out. Probably just a glitch but I'd like to make sure... There are some phrases that are black listed on the server and I'd like to check.

_________________

@sboots @jaylach thank you so much! ^_^

Masha contacted me yesterday by email (via the email address in my profile) after she had problems posting into the forum and has asked me to share what i replied to her here, so she can continue the discussion here.

Hi Masha,

I got both this email and the PM in the Forum... odd how the forum allowed you to PM but not post?

So sorry to read about what you've been through, and are continuing to go through.
I'd love to be able to tell you that you will make a full recovery but the truth is at the moment no-one knows if that will ever be possible... all i can say is that what i've experienced over a very long period (just over 3 years now) is that i have been recovering, i'd say i'm about 80% of who i was before i developed LC and to be honest i don't think i'll ever get much better than that.
Compared to the mess i was in 3 years ago i'm happy to take 80% recovered if that's the best i can get because back then, in Aug 2020, not even my doctors had heard of LC and no-one had any idea if i would live or die, or even worse, if the brain fog would be with me for ever.

Before i forget to mention it... i don't know why the Forum software wouldn't allow you to post into the thread, it should have but it can be a bit fussy if you use alternate methods when adding an emoticon (or Smilies as the board calls them). I use only the 'Smilies' that are available on the Forum to avoid such issues.
Also when replying to a thread i use the Enhanced Editor (a button found just below the Reply box) because it gives additional editing/formatting options.
As for your avatar, the board has fairly draconian limits on the size that avatars can be "Maximum dimensions; width: 150 pixels, height: 150 pixels, file size: 2441.41 KiB" so maybe you exceeded one those limits?
Fyi, because the picture i used is landscaped i resized my avatar picture using MSPaint in Windows 7 down to 150 pixels by 100 pixels before i uploaded it to the Forum.
The board also has a Test Forum where you can test your settings if you want to play about with your settings before actively posting etc:
Near the bottom of the Board Index here - index.php
If you are still having problems then PM one of the Administrators/Moderators; jaylach (aka Jay) or sboots (aka Steve) for help... they are/were both MSMVP's and extremely helpful so i have no doubt they will help you.

If you manage to work out the posting idiosyncrasies of old school Forum's again then feel free to post what you PM'd or emailed into the Forum so other people know who you are and why you are posting

That said, onto commenting on some of the things you've experienced... first and foremost you never need to apologise to me for anything you say that you might have misunderstand or overlooked.
I know only too well how on a bad day how frustrating it can be not to be understood or not being taken seriously that results in frustration levels sometimes clouding our already clouded and barely functioning brains.

I want to quote this paragraph you sent me because it really strikes a chord with me:



I was never tested nor was i vaccinated, they didn't exist in Feb 2020 when it is believed i caught the virus from Chinese workers from Wuhan who were working in my workplace, or when LC let rip on me in Aug 2020.
I was a sub-contractor on the site i worked on but i can't blame my employer or the site i worked on for contracting Covid because at that time it wasn't believed to be in the UK... it took months of telling my doctors and family that what i had was Covid/Long Covid (again, at that time no-one knew what LC was, or had even heard of it so they didn't take me seriously)... my employer simply didn't believe me because when i attempted a return to work in June 2021 (i think?) i was supposed to be on a phased return but what they did was try to increase my days at work which left me no option but to quit, what happened next was a spiral of mental health issues and therapy for PTSD etc, i simply couldn't believe why my employer would do that to me when i'd spent the best part of 8 months clinging onto the hope that if i can get back to work i would be ok.
My site manager later apologised to me for not believing me, admitting that the real reason she thought i'd gone off sick was because i didn't want to work there any more and wouldn't be back.
I'd been in that job for 20 years and had had a good working relationship with her for circa 10 years up to that point and when it finally hit her that i was back at work she broke down in tears because she hadn't believed me.
I'm so glad to hear that you have an understanding employer and i sincerely hope that continues, i wasn't so lucky in that (a.) Mine didn't believe me and (b.) I couldn't work remotely due to it being a Security Guard position.

One of the worst things about LC for me was the way it went round and round in cycles... every time i woke up i'd ask myself:
Ok, i'm still alive, that's good.
What symptoms do i have to deal with today and will i manage to do anything without having to go straight back to bed?

I'll skip over much of the rest, not because i don't care or want to talk about anything you have to say but this will turn into a novel if i don't and i'm not sure if that's what you want or need right now?

Don't get me wrong if you want me to go into more depth then i am absolutely happy to do that.

To close this for now, your summa summarum had something in it that was, for me, probably the beginning of my recovery so far.... "Talking about it."

I can't express how, with hindsight, important it was for me to finally find an outlet to have someone to talk to who would just listen to me and be an outlet for all of the fears and emotions i'd experienced without disbelieving anything i said.
She was a cancer counsellor for a Scottish cancer charity (Rosemarie was her name) that my local health authority thought might be helpful for the PTSD i was suffering from... there is not and has never been a Long Covid Clinic in Scotland, the health service in Scotland has gone piecemeal as they see fit... imo totally the wrong approach because instead of clinicians who are dealing with LC patients every day it is pot luck whether you get referred to one who has any experience of LC patients.
I'd been referred for Occupational Help Therapy prior to that and to be honest i thought it was a waste of time... the usual exercise more and keep a sleep diary stuff etc... i knew she knew she was out of her depth when i told her a weeks sleep record on week 2 of the therapy... she didn't say she didn't believe me but she might as well have!

Rosemarie, i now think of her as one of my three guardian angels.... the other two are one of GP's at my local medical practice and my wife.
The GP at my local medical practice i now know is/was the lead medical practitioner at the practice but at the time i had no idea who she was, after she called me into see her during one of the lockdowns i was amazed that she spent almost an hour with me and my wife asking all sorts of questions, she appeared genuinely interested to find out as much as she could about my timeline of events etc, she was the one who referred me to Rosemarie.
Rosemarie had never dealt with a LC patient before and came across as genuinely caring and empathetic, i presumed that she's trained for all sorts of horror stories but even she was shocked at some of the things i told her i'd experienced... the flashbacks to the pain and discomfort etc i'd experienced really shocked her when she delved into what i had been through, and at that time was still going through.
One of the odd things about Rosemarie, odd is the wrong word, but she was able to get into parts of my mind and uncover things that i hadn't even realised i'd compartmented because i couldn't cope with them.

I'm not saying everyone with LC needs some form of therapy, but talking about it an open and frank manner definitely helped me.

Anyway Masha, probably best i leave it there before your head implodes lol

Hope you have a good day and if we don't talk before, have a great Christmas and New Year

Doddie

Hi Doddie, I would like to dive deeper in a few things you've mentioned.



What was the main difference between years 1, 2 and 3? Was there an improvement in the last year? Which symptoms do you still have?



I can't imagine how horrifying it must have been to have LC from the first wave when no one even knew it was going to happen. This virus is evil.
The brain fog stuff is scaring me the most! I somehow got used to the daily pain and tiredness but I'm afraid how the cognitive problems are going to progress. I have a feeling that it is only getting worse with time.
Some specific examples...
I'm afraid of driving on a bad day because I lost focus a couple of times and did some "stupid" things - nothing dangerous so far but you never know. I'm often super anxious before driving, imagining all sorts of scenarios (like I'm going to have an accident because of the fog and someone will die).
Very often I can't organise my thoughts on timelines - e.g., I had to ask my partner how long we have been together. It's also why I thought I had Covid for more years - it just feels so long! I had to check my medical records to figure it out. I also keep a daily log on how severe my LC is (I use Bearable app for that).
One day I couldn't remember the name of my aunt.
Once I wasn't able to play a simple card game - I couldn't focus on what I had to do and I couldn't add numbers.
However, I got into board gaming hobby in the last year for that specific reason - to give my brain some exercise. I takes me ages to learn rules and I prefer to play solo so I don't feel under pressure to make quick decisions. Some days I have better focus and can play relatively normally - it's pretty unpredictable.
I wish I had more free time (and energy) to devote to this hobby.
And then the usual memory problems which are probably normal as you get older but it's still annoying to be asking my partner the same questions again and again. Thankfully he is always patient with me and he likes The Notebook film so I guess he will still love me if I get dementia.
Speaking of dementia - I'm actually terrified of it. My grandpa had it and it was heartbreaking. We lived together but eventually we had to "put" him in a nursing home because we couldn't keep an eye on him 24/7. He thought we were coworkers.



This makes me really sad, especially considering that you worked there for so long. What is your work situation now? Did you get any help from the government / social services? I know I would get depressed if I wouldn't be able to work. We have good social services in Slovenia (although others wouldn't agree - they don't realise how much worse it is in most of the countries). But even if I did receive some sort of financial help, unemployment always took a toll on my mental health.
My mental health has, perhaps surprisingly, actually been better than before Covid. Probably because my situation in other areas has improved. I finally got full time employed, I moved in with my partner and I'm in a healthy relationship for the first time in my life. All this gives me a sense of security which I didn't have before. I'm so sorry that you aren't so lucky. I have bipolar disorder, so I know how it is when you are in the deepest of lows (or highest of highs). I was hospitalised a few times when I was considered dangerous (mostly to myself). My illness is in remission for several years now. I do have some bad days LC-related but nothing clinical. I also dealt with PTSD when I was in my early 20s, I cannot put it in words how horrible it was. So I understand (or at least as close to as possible). You recover with time, but some scars stay forever. I went to CBT then and I think it helped a lot.
How is your sleep now? I take a minimal dose of Quetiapine to help me fall asleep - I'm also prone to insomnia and not sleeping enough can be a trigger for mania which I want to avoid at all cost.



Yes. Except for the "I'm still alive" part. But I do go in circles. I'm slowly coming to terms with that.
My problem is comparing myself to others too often and having high expectations of how much I can do. I struggle with feelings of guilt, inadequacy and embarrassment if I can't keep the house clean and neat for instance. I should accept that if posting on a forum, taking a 5' walk and watching Netflix is all that I can do in one day (like yesterday), that's OK.



Maybe not, I don't want my head to implode. Actually, going through you thread felt a bit like reading a suspenseful novel: yay, he's getting better! ... oh no, it's worse ... he is finally nearing the end of the tunnel, overcoming so many obstacles ... or not ... what happened during the months he was absent from forum? I want to find out! ...
I can relate to the roller coaster, at least in the 1st year. The 2nd year has been bearable but at least more or less steady.



Yeah, I think that taking time to talk about it here helped me, even if LC didn't affect my mental health that much. I usually keep silent about it (if not directly asked). I do see a psychiatrist twice a year (for like 5'), just so that he checks that I don't have an episode or something - it's not really a therapy.

I wish you happy holidays! May your body be pain-free, your brain clear and sunny, and your mind peaceful, even if sometimes comfortably numb. I love Pink Floyd!

Hi Masha, i'll do my best to answer your questions however some of the timings might be a few months out... i could look back and be more exact but it'll take me a long time to do that so please take them as approximate.



Year 1 was odd and hell, it started off with a Covid infection (that at the time i thought was just a mild cold) in Feb 2020 and took a long time for LC to fully develop, starting with mild joint pain in my knees that got steadily worse, then hives (for only 2 weeks but it was all over my body except for my hands and face), then progressively worsening shortness of breath... until one night in Aug 2020 at 5am when i was at work things rapidly went downhill... within an hour i went from feeling relatively ok to what i can only describe as a complete mess... i was vomitting, i could only walk about 50 yard before needing to stop to catch my breath, i was sweating and my whole body was trembling, the nausea was unbearable and i was hit with a wave of fatigue that felt like i'd been hit by a bus, i had a headache from hell.
I somehow managed to drive home, fortunately only a 10 minute drive, when i got home i couldn't even get to bed or take my jacket or boots off... i collapsed on the couch and passed out light a light, when my wife got home from work about 10 hours later she woke me up and helped get into bed... and that was pretty much where i spent the next 8 months, in bed asleep except to get up to go the bathroom - which would send me back to bed for another 16 to 18 hours.
I literally couldn't do anything in or around the house except sleep and try and force myself to eat something... i had no appetite at all and often when i did eat it came back up but my wife would make me soup or toast just so i was eating something.
In a nutshell it was hell because by this time the brain fog had fully kicked in and to be brutally honest about it, now i can look back, i was like a living zombie, unable to communicate or when i could it would be in short bursts before my brain would just shut down again.

Year 2 for me was a turning point and the beginning of a new chapter, namely when i got my first vaccine jab in spring 2021... i'd read reports online from the US and Israel that doctors there were anecdotally reporting that a small number of their LC patients were seeing a marked improvement in their symptoms after having a vaccine jab so needless to say i was desperate to get my first jab in the hope i got lucky and fell into that bracket.
I believe that it is now accepted that between 3 & 5% of LC patients did indeed see an improvment after a vaccine shot.
I got lucky, the day after my first jab i had pain in every part of my body where i'd previously had symptoms; joints, lungs, headaches, stomach etc but the pain 'felt' different, 2 days later and all those ailments had markedly improved BUT i was still left with some issues... the brain fog, shaking hands, insomnia and a few more which i forget at the moment persisted. The brain fog over the remainder of that year did continue to improve... i can't quite remember a defining moment when i woke up one day and i thought... omg the brain fog has lifted and cleared... a few days after the vaccine shot it definitely improved but i was still struggling with maintaining train of thought and finding words but as the months rolled by it improved to the point i now consider myself not to have brain at all.
I don't know if watching quiz shows had anything to with helping clear the brain fog but it was certainly a good way to gauge where i was with it... i'm sure you'll know this feeling "i know the answer to that question but why can't i find it?"... one day springs to mind that i don't think i'll ever forget, i was sitting on the couch watching a quiz show on TV with my wife when right out of the blue i was firing off all the answers to nearly every question, she turned and looked at me with a look of amazement... i just turned to her and said "Hi honey, i'm back LOL".

Another thing i turned to was Lego, that might sound odd but the trembling hands persisted and i could barely hold a cup of coffee or glass of water... i don't remember where the idea of Lego came from, it's not something i've ever had before but omg it worked wonders... all i can describe it as would be like retraining my hands how to operate.

It was shortly after that that i contacted my employer about a return to work and... i've never suffered from mental health issues before so what happened next really shook me when they put me into an impossible position.
I quickly spiralled into what i now understand to be depression that triggered all sorts of other horrendous mental health issues such as PTSD.
I lost interest in everything and while i was never suicidal i did, for quite a while, give up the will to live and just lie on the floor curled up in a ball in the middle of the night crying trying to understand why life was doing this to me.
That went on for maybe 3-4 months before i realised i needed help, that for the first time in my life this isn't a battle i can win on my own so i reached out to my GP practice... and as you know, i got lucky with a GP who took the time to understand and believe me, who referred me to the most amazing therapist.

Year 3 - Dec 2022 to date.
The therapy (remote) which ended this time last year was really hard for me, not because it wasn't something i wanted or needed, more that it left me physically and mentally exhausted after each session but the good news is i feel it was exactly what i needed. I no longer feel the way i did about life and the flashbacks etc have stopped.

The only symtom i've struggled with this year is insomnia... for a very long time my sleep pattern was completely flipped (i.e. I'd be awake all night and asleep all day so never seeing daylight) and i couldn't control it no matter what i tried.
I spoke to my GP about that about 12-18 months ago and brought up Melatonin with her, i'd read online that it can be useful for insomnia but i wanted to talk to a GP about it before i tried it.
She explained that she would have no issues with me trying Melatonin but she can't prescribe it, GP's in the UK are not allowed to prescribe it, only a hosptial can do that but because the hospitals aren't accepting referrals at that time she couldn't refer me to a hospital for assessment either.
Talk about kicking a man when he's down LOL
She did however go on to give me the name of a manufacturer of Melatonin, but didn't say any more.
Long story about researching the law in the UK re Melatonin cut short... it turns out it is legal to import it into the UK, it is only illegal to sell or resell it.
I had mixed results with Melatonin, yes it would send me to sleep within an hour or two of taking some but slowly my sleep patter would revert back to being reversed, add that when i took some i'd be out for about 12-14 hours.
Fast forward to about 5-6 weeks ago, right out of the blue i was sitting at my PC at about 8pm and i was suddenly hit with a wave of fatigue... not LC fatigue, a 'normal wave of go to bed' that i hadn't experienced for years.
So far my sleep pattern has been stable again and this has been the one symptom that's kept me out of looking for work... when i worked nights a reversed sleep pattern didn't matter but now i need to find another job it's crucial that i can get up in the morning and go to an interview/job.



Of all my symptoms brain fog was probably the scariest for all the reason you say above, but also because it's the one function we need to have in order to be able to function as a human.
I lost the ability to speak for a day and that really freaked me out... it was early Sept 2020 (if i recall correctly) and my wife and i were sitting on the couch, i'd just got out of bed at about 6pm after 18 hours asleep and (in fairness to her neither of us had any idea what was happening to me at that time) she started to lecture me about being so lazy and i needed to do more about the house... i could hear her talking to me and i understood every word she said but i simply couldn't speak, my brain didn't/couldn't send the signals to my voice box, i wanted to explain to her how i felt and why i was the way i was but i could not speak. Naturally my apparent ignorance for ignoring her angered her and she started to lose her temper, i couldn't understand what was happening to me and the sight of her losing her temper with me and i couldn't respond... all i could do was hold up my hand and look at her to signal please stop and go back to bed.
I have no idea what my facial expression must have looked like but i did my best to explain to her what happened over the next couple of days, that was the only time she ever lost her temper with me for over 2 years.

I'm not a doctor so i can't say what may lie ahead for you but all the reports and evidence i've see so far is that LC sufferers do eventually make a slow recovery from brain fog... that said, i don't think anyone knows if people like us will make a full recovery from brain fog.
Personally i am night and day away from i was back in 2020, but i have no idea if the brain fog has lifted forever.


I've not had a single penny in state aid, due to a quirk of the UK 'furlough scheme' i never qualified for it because between March 2020 and Aug 2020 i was considered a 'key worker' so continued to work while the majority of the UK sat at home and were paid 80% of their salary by the Government.
When i fell ill in Aug 2020 the Govenrment had already closed the 'furlough scheme' so i couldn't claim for that benefit, those who were already registered for the 'furlough scheme' could continue to claim for 80% of their salary while they were sick not matter what they were sick with or indeed if they were back at work.
The only aid i got was 6 months of Statutory Sick Pay which all employees are entitled to claim but the amount is paltry compared to 80% of a salary.
I did try to claim for ESA (Employment Support Allowance) at one point but the governmant rejected my claim despite having a charity making the claim on my behalf, they sent me a letter detailing why they rejected my claim... apparently i needed to score a certain number out of 20 i think it was... i was scored 0.
To this day i still can't read the reasoning why i was scored 0, maybe one day i will be able to read the letter in full but i feel so let down by the welfare state that right now i have no interest in anything they say to me.
From what i understand i should have appealed that decision but i was in no mental or physical state to do that, plus the charity i was dealing with had been recommended by my GP Link Worker and the charity would never respond to my requests for further help... my GP practice no longer use that charity.
In a nutshell i was caught in a perfect storm and left to fight by myself... not for the first time in this disease.



It's so good to hear that mentally you feel better than you did pre-covid, the only advice i can give you (fwiw) is try not to over-think it and take it day by day in the hope that one day you can put this nightmare behind you.



One of the things that my PTSD therapist picked up on that i didn't even realise i was doing, was placing myself under huge amounts of pressure to do normal things and because i wasn't able to do them i was piling guilt and feelings of inadequcy on myself.
It seems so simple now but when she said to me "George, it's okay to have days when you don't want to do something, or don't feel able to do something, that for a healthy person is normal so don't put that pressure on yourself" it was like a light bulb moment that gave me a green light to pace myself instead of pushing myself into a corner.



I can't claim that my journey has been unique because it most certainly hasn't, what i can say though is that i began this thread more as a diary of events that i was living with because no-on knew anything about LC at that time other than the people who were living with it and i hoped that someone somewhere might one day be able to read and learn something from it... that you are here now and relating to some parts of it makes it all worthwhile

As for the missing months, nearly all of them are because i was too sick to post into the thread or had nothing new to add... by that i mean it was more of the same old cyclical symptoms, or in the case of my later mental health issues not realising what i was suffering from so it took me time to understand what was happening to me before i could share it here.

If i'm reading the last sentence in the quote above correctly, your first year was a roller coaster and your second year has been bearable, take some comfort from that, that maybe, just maybe, you are starting the long road back from this living hell.



Right back at you, Masha

This has been an interesting week... just when i think i've seen the last of the stings in the tail that Long Covid can throw at me another pops up.
It's not a new symptom or anything like that, it's more a continuation of something i can't seem to throw off, namely my ongoing sleep issues.

When i get back into employment i won't at all be worried or surprised if i get fired because of poor attendance if i sleep through (or arrive late for) a shift because if that happens i'll expect it and the worst that happens will be i'll back in the situation i am now.
Fwiw, in the 19 years i was employed in my previous position; prior to Covid i'd only taken sick leave on 5 occassions and was only late for a shift twice (due to weather conditions) so i don't take tardy timekeeping lightly.

What alarmed me this week was that i got a letter from the High Court citing me for Jury Duty... if i failed to attend that then the judge could potentially issue a warrant for my arrest for contempt of court, with the possibilty i end up with a criminal record.

With that in mind i contacted my medical practice and spoke to a GP who agreed with me that i'm not fit for Jury Duty adding she would write a medical exemption and it would be forwarded to the court on my behalf.

The GP didn't stop there though, she was concerned that my sleep issues were still ongoing and recommended that i see the mental health nurse at the surgery to (in her words) "drill down into what's causing my sleep issues".
I'm not convinced my sleep issues are psychological, i believe they are physiological (specifically, damage to my pineal gland during the acute phase of Long Covid) but i'd be an idiot to refuse whatever help is recommended if there's an outside chance it could help, or lead to further investigation/treatment.

The next day i emailed the court and explained all of the above to them, next morning i got a reply from the court saying i was excused from Jury Duty on medical grounds which was a huge relief.

I gave up a long time ago of my life ever returning to 'normal', i just wish it would settle down into whatever the 'new normal' is.... maybe this is my new normal, chasing the new normal, i hope not.