I got a phone call from my medical practice tonight at 7pm, a time that i wouldn't have expected them to call me... the only reason i picked up the call was the caller ID said it was a local number... even then i was still expecting it to be a scam call but i chose to answer it anyway.

It turned out to be from the GP, the one who concurred that back in 2020 that i was infected with Covid-19 back in Feb 2020.. the same one who originally recognised my symptoms as Long Covid.

She wanted to talk to me about an option that i might be interested in that had only landed on her desk today... rather than CBT she said said an opportunity to forward me onto a place for something called 'a whole life medical study' had opened up for me if i wanted to try it.... i'm pretty sure that's not what she called it but it was something like that, i'll know more next week when the doctor who'll be handling me explains in greater detail next week.

Basically it'll be an 8 week course of treatment conducted via Zoom, evening sessions that'll last for 2 hours at a time for 8 weeks.

At this point i don't know exactly what any of that will involve other than my GP did say it will look at every part of my life so far, whether that means a deeper psychological insight greater than the therapy i had for PTSD i don't yet know, all i know is i need help because whatever is continuing to happen to me is outwith my control and it needs to end.

I also mentioned to my GP how much i felt meltonin helped me (banned in the UK for GP's to prescribe) and she was delighted but not surprised it helped, we had a discussion about how i had to import it from California, she also found it very interesting that i was able to wean myself of it when my sleep reversal appeared to end due to taking melatonin. Wean is probably the wrong way of putting it because i wasn't addicted, more that she was surprised i was able to reduce my usage in the way i did to get where i thought i needed to be.

This whole journey has been a complete mess for me from day one that i've had no control over... the oddest part is that even though when i think i'm regaining control, those are the moments that i realise i've been least in control.

Fingers and toes crossed that the sessions help you on the road to recovery.

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

I'm at the end of my tether with this, i'm so close to the point that i feel i might as well just give up and quietly slip away because what i'm putting my wife through isn't fair on her, i have life insurance that would set her up for a number of years but i'm not sure i'll be able to maintain those payments much longer because our savings are almost exhausted.

I've been at the point that my only reason for fighting has been my wife and what it might do to her if i passed away for well over a year now, i genuinely see my post above as my last best hope.

It breaks my heart every time i learn of someone who has Long Covid, it angers me beyond words when i hear of someone claiming they have Long Covid simply because they have a headache for a few weeks... that's NOT Long Covid, it's simply a lingering infection in the same way the common cold can linger.

Quietly slip away? That's crazy talk, Doddie. Go to the sessions your GP recommended. Hopefully they will be good for you and your wife.

Best of luck..........

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BB
http://barrypatch.net

It will get better -- hopefully with the help of these sessions. You've fought hard and you have come a long way. I'm quite sure that your wife would much rather have you than the insurance. "For better or for worse, in sickness and in health..." My wife suffers with depression and anxiety. She has worked hard to manage it and I support her in those efforts.

May this next course of action bring you much relief -- I'm rooting for you, too.

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

What Steve and BB said.

Sounds to me that you are going through a bout of depression which, considering what you have gone through, is quite understandable.

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Thanks guys, i was having a bad night when i wrote that... i shouldn't have posted it and i was mosty just lashing out at myself and life in general, after some sleep i felt in a much better place, rest assured i don't plan on going anywhere anytime soon.

On a more positive note, i got a phone call today from the Doctor who will be hosting the zoom sessions to have a quick chat about what the therapy will include and to ask if i had any questions. She confirmed the sessions will begin this week on Thursday at 7pm.

A couple of things surprised me that aren't important but nonetheless they did surprise me...
1. She's said she was a Doctor working out of Ireland, her accent sounded more Northern Ireland than Republic of Ireland not that it matters where she's from, i just expected her to be working from somewhere in Scotland given the devolved nature of the NHS in the UK.
2. The zoom calls will not be 1-on-1 they will be group sessions and i'll be the only male in the sessions, when asked if that would be an issue for me i immediately replied no, i need help and if the ladies in the call have no issues with that then neither do i.
3. The speed between my GP offering me a place on the therapy sessions and them beginning, 6 days! Given the length of waiting lists for anything medical in the UK just now i'm amazed at how quickly this has progressed.

So as a quick update on where i am now please don't pay any attention to my previous post, sometimes i do feel alone and that this nightmare will never end but i'm not going to stop fighting, indeed days like today just prove to me that i can't stop fighting because help is out there.
The hardest part for me is recognising when i need to ask for help, i've never been through anything like this before and there have been so many different stages i've been through that it can often take me months before i realise that where i am 'now' still isn't normal and i need to reach out for more help.

Onwards and upwards, for as long as it takes.

Again, thank you for all the support you've all given me.

Sounds good.

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I am pleased to read this update. Of course I will pay attention to posts such as your prior one -- you were down and I hope that our responses reminded you that you are not alone and that you have indeed come very far in your recovery!

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

@Steve, Thank you yet again for your input, you and everyone here have helped to keep me going in ways that none of you will ever know... the previous 11 pages that i know you've read have it all down in black and white so i don't need to rehash that again

There are a few things i'd like to share with the Forum that i forgot to mention in my previous post, and a couple of links that i just found today that might be worthwhile sharing that i don't feel need a new thread:

1. My medical support in the initial stages of infection between Feb 2020 and Aug 2020 was abysmal in that an established GP was pigeon holing me to fit with known infections, when my health fell off a cliff in Aug 2020 i was assigned to a locum who as far as i could tell (during lockdown so i never met her) was nearly straight out of medical college, she was fantastic in that she never tried to guess a diagnosis, she would listen and be sympathetic, even apologetic that she didn't understand what was happening to me but explained that the medical practice was seeing more and more of what i was reporting.

2. Eventually the locum left the practice and i was assigned (not the right word because i had a choice of GP's to chose from), i.e. my current GP. She's from Northern Ireland and after she called me into the practice for what turned out to be a very long consult (with my wife present) she has got me to where i am today. I did some research on her back then and found out from her online presence that she had an interest in Long Covid so i was very keen to focus on her for whatever, if any, treatment she could offer me in the months and years to come.
Whether or not the Irish connection has anything to do with my next phase of treatment remains to be seen but i wouldn't be surprised to find out they know each other?

3. What i found very interesting is that the Doctor who is hosting the sessions starting later this week, when she asked me if i thought it would be something i was interested in, i asked her the same question without answering her... did she think i might benefit from the sessions?
She told me that she was also recovering from Long Covid and she absolutely thought the sessions might help.

With an aswer like that to my question, it was a no-brainer to say yes.

As for the new links...

Over 2,000 Guardian readers told us about their long Covid fight. Here are their stories:
Obviously not 2,000 stories but what is printed paints the picture.
https://www.theguardian.com/society/2022/oct/25/long-covid-fight-guardian-readers

Four ways to support a friend or loved one with long COVID:
https://theconversation.com/four-ways-to-support-a-friend-or-loved-one-with-long-covid-190824
There is an audio link near the top of the article that shouldn't be ignored if you're more into audio than text.

As an aside and forgive me if i've already posted this list (i don't think i have?) before but below are just some, when i say some it's most, but because i was so ill i wasn't able to document every symptom i experienced, the ones listed below were the most extreme that i could recall when i filled in a UK University study into Long Covid back in Jan 2021.
Not included in the list is all the mental health problems i've suffered since as a consequence, it also doesn't explain why some of the symptoms appear to overlap but trust me there are valid reasons for that (e.g. taste)

Violent shaking
Trembling
Brain Fog
Confusion
Forgetfulness
Loss of smell
Loss of appetite
Loss of taste (change of, would be a better description)
Hearing Strange sounds at night
Shadows in corner of eyes
Tinnitus
Muscle pain
Lower Back pain
Swollen glands
Breathlessness
Anxiety
Frustration
Isolation
Demoralisation (due to not being believed)
Feelings of sadness
Diarrhoea
Belching
Gas production increases/decreases
Insomnia
Fatigued sleep
Stomach cramping/intestinal cramps
Floaters in vision
Night sweats
Hallucinations
Vomiting
Sensitivity to light, sound, movement
Hives
Excessive bleeding gums
Metallic taste in mouth
Dizziness
Feeling feverish without a temperature
Nausea
Low oxygen levels
Trouble trying to form words
Trouble focusing attention
Balance issues
Tachycardia
Extreme fatigue
Vertigo

I've said this before and i'll say it again, i would never wish what i've been through on my worst enemy, it was truly horrendous what i lived through and it feels like it's only now that 'people' are beginning to understand.

I've not been out into the wider world for over two years now and as much i wish i was, in a sense i'm glad i've not been because the mentality that persists that Long Covid is nothing to worry about scares the life out of me, the sad but good news is that more and more people are becoming infected and experiencing some of what i went through is really opening eyes... my wife's business owner is currently suffering from Covid induced fatigue and he can't believe what's happening to him, other business managers i know have recently suffered from Covid induced brain fog and they are equally like WTF??

While i don't like to hear of people getting a glimpse into what i went through for such a long time, it does raise a rye smile that says welcome to my world!
Next time try over 50+ symptoms all running cyclical and never ending!!

To this day people are still developing Long Covid in the way i did, albeit less in numbers and severity... for most it'll be a couple of symptoms that will clear in a few days or weeks but for some it won't.

Ponder that thought.

This is exactly why my wife and I take the pandemic very seriously, even though so many pretend that it is no big deal. Masks, sanitizer, and no indoor crowd activities other than grocery shopping once per week.

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

Until there is an understanding about what causes Long Covid i think you are being very wise, personally i'm at the stage now where i have to get my life back and if that means i have to re-live what i've been through then i'll have to re-live it... i've lived like a hermit for so long now that what will be, will be.

If i were in your position i wouldn't even dream of thinking the way i do but i have another 9 years to pay my way before i can even begin to think about retirement so i have to get back into the workplace, as things stand i have no option other than the sooner the better.

I mentioned this yet to be peer-reviewed paper in another thread but if nothing else it shows that science might be moving in the right direction... even if comes to nothing it just might help other studies open their eyes in the right direction... for me it makes absolute sense, even if it does come to nothing.

Impact of cross-coronavirus immunity in post-acute sequelae of COVID-19
https://www.medrxiv.org/content/10.1101/2022.09.25.22280335v1

The irony that a non Sars-Cov-2 coronavirus infection might have led to my years of suffering is not lost on me, indeed it would be welcome because it would give me closure.

For those that can't/don't want to read the paper above, the thinking is that the immune system reacted to a previous coronavirus infection that had nothing to with Covid-19, in effect antibodies were produced that had no effect against Covid-19 that then allowed Covid-19 to run riot within the host.

It's an intriguing theory.

I thought i'd posted about updating how my therapy session went after Thursday evening that when i'd digested it i'd give an update, but for some reason i can't find that post so i can't refer to it.

That's not important, the Dr leading/hosting(?) the group sent me three video links to watch, two were by Dr. Gabor Maté who is (from what i understand so far) the basis for her therapy and it's an intriguing concept... one that i'm still not sure will work for me but because the concept is so different (to me at least) but i'll persist with it in the hope it helps simply because i have nothing to lose and i need help.

At the start of the Zoom session the Dr overseeing the therapy sessions explained that this was a new type of therapy and the six of us who were in the session were part a pilot study.
For reasons that should be obvious i can't talk about the other participants, that said it does appear i'm the only one who's dealing with the after effects of Long Covid within the group... it's basically a broad mix of people dealing with all sorts of conditions that this 'new' therapy might help.

The first two video links i was sent are hosted on Youtube and freely available so there should be no issues with me sharing them if you want to watch them, the first is a bit spiritual (imo) but stick with it/them.

You decide how to feel, Dr Gabor Maté (8:26 mins)
https://youtu.be/yRd5hcdCo6k

Dr Gabor Maté on how to reframe a challenging moment & feel empowered (7:26 mins)
https://youtu.be/__JLFw2FtEQ

The third link i don't feel comfortable sharing because it was a personalised message to the group from the Doctor leading the group about what would be happening in the next module, the link if i shared it would probably work but i don't have permission to share it so for that reason i won't.

As for how did i feel the zoom session went... for a start i'm clearly a dinosaur because this was my first video conference call ever and there was a bit of a panic to learn that the Zoom app on Amazon Fire and Microsoft Surface really sucked!!
My wife who has used Zoom many times for work purposes said, the app sucks, use the web based interface... problem solved but because i phaffed around with the app for so long i didn't have time to test the functions (audio/video) but fortunately i managed to blag my way through the session LOL

Even without knowing where the sessions were going to go i was buzzing when the two hour session ended, at first i was talking myself into how could i get out of the next one... but i felt that way with the PTSD therapy so i kept telling myself that the PTSD therapy helped so don't you dare back out of this one without a damn good reason.

Clearly it's early days but i'm hopeful.

Very interesting. Yes, therapy is an interesting thing, but it generally does help -- a whole lot. I hope that this will be the case for you, too.

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

Impacts of long Covid detailed in new report must be 'wake up call'
The report found that only one person out of 222 who replied had fully recovered.
https://news.stv.tv/scotland/impacts-of-long-covid-in-scotland-detailed-in-new-report-must-be-wake-up-call-for-scottish-government

I read this on the day it was posted on the STV website (Scottish Television for those that don't know) and i've been having an internal debate about whether to write about it here but i'm so disgusted about the lack of focused support in Scotland that i've decided i will.

Disclosure: I did not take part in the survey, had i been asked i would have in a heartbeat.

To put that into some sort of perspective the population of Scotland is circa 5.5 million yet there are 200,000 people living with Long Covid with no centralised support centres (aka Covid clinics).

When asked about this the Scottish Government always mentions a magical figure of £10 million pound like it'll last for ever, it was given to the devolved parliament in Scotland by Westminster years ago (early 2021 i think?).

As for the source that STV refer too, i can't find it, i'm sure it'll be on one of the many Scottish Parliament or Scottish NHS websites somewhere but for a Government report it really shouldn't be that hard to find.

I have no idea where this is going to go, all i know is i'm living it.

Some of the literature is blowing me away but where it i'll end up is equally mingblowing.

How childhood trauma affects health across a lifetime | Nadine Burke Harris
https://www.youtube.com/watch?v=95ovIJ3dsNk

There were two other links but suffice my ACE score was 4 and that really surprised me because i thought it would be 1 or 2... 4 really shocked me.

The result of 4 makes sense, but it was still a shock.

How much it makes sene to you i guess will depend on your wilinglessness to watch:
https://youtu.be/95ovIJ3dsNk

I am shocked to the point i feel someone has got to be having a laugh, i'd put it in much stronger langauge than that if i thought i could get away with it lol.

Melatonin could be a potential therapy for long-COVID symptoms
https://www.news-medical.net/news/20221109/Melatonin-could-be-a-potential-therapy-for-long-COVID-symptoms.aspx

Possible Application of Melatonin in Long COVID
https://www.mdpi.com/1930538

I'm shocked because Melatonin really helped me with my sleep pattern but recently i've been reversing again and whenever i mentioned to my medics that maybe it might help me i was met with a blank wall, except for one GP who directed me to Biovea so i could import it legally into the UK for personal use.

To find out now that my suspicions might have some grounding in truth is nothing new to me but it's still mind blowing, not least because i was talking to my therapy group that i was thinking about resuming taking melatonin again tonight even thought i really didn't want to go down that road again.

If this pans out the way i think it will it'll just be me being another step ahead of science and that really freaks me out... i always seem to one step ahead of the scientists in ways i never expected.

I'm not at all surprised about Melatonin. I recommended it ages ago.

_________________

I am also a big fan of Melatonin. I've been taking a 5 mg tablet at bedtime for years....it helps me go to sleep and stay asleep.

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BB
http://barrypatch.net

Heh, on days that GG and I do not go hiking, I exercise for two hours ... I never need any help getting to sleep.

Acadia

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The blazing evidence of immortality is our dissatisfaction with any other solution. -- Emerson

Jay, i know you did but i had very little understanding about Melatonin at that time and with the best of respect you're not a doctor... couple that with all the disinformation that was flying about at that time regarding anything Covid i was highly sceptical about anything anyone outside of medical circles said. It didn't help that, as i subsequently found out, Melatonin within the UK is banned from being prescribed unless a hospital consultant is writing the prescription.

I can't be prescribed it by a GP, i can't walk into a chemist and buy it over the counter YET i can import it into the UK legally for personal use so long as i don't sell it.

The logic behind this legislation makes no sense.

That is strange! Here it is an over the counter drug with no restrictions.

BTW, I was just teasing with my previous post.

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I find nothing about Covid-19 strange anymore, i've learned to always expect the unexpected.... Melatonin just being one of the many oddities.

i.e. I did quite a thorough, as thorough as i could find with a search engine, about importing Melatonin into the UK and i was very surprised to find the legislation does indeed allow for the importation of Melatonin into the UK from abroad if it's not then sold on for third party use.
It beggars belief that i can go to my GP who might think Melatonin could help me, only for the GP to turn around and say they are not permitted to prescribe it without referral to a hospital.

Yet i can legally order it from the USA or the EU for importation into the UK without any safeguards at all from a GP.

With respect i don't find this topic worthy of teasing, it took me months to find out that Melatonin might help me, months more to find out it did, and even more months to realise i might have come off it too soon.

This is likely off-topic for this thread but it's relevant in that it's my experience... as some of you will know i bought tickets for an Andrea Bocelli concert in Glasgow a long time ago.

The tickets were not cheap, £300 for two people.

The cost was irrelevant for me because he was a lifeline for me when my life was falling apart due to Covid.

Fast forward to 2022, Queen Elizabeth passed and her funeral was the day before the Bocelli concert, i knew physically and psychologically i couldn't do both so i had to choose which was more important... whatever i chose i was going to be let down, either not witnessing the passing of a monarch, or not witnessing arguably one of the finest voices of my lifetime.

Right or wrong i chose to focus on the Royal funeral.

It's so strange looking back now, i really wish i could have done both.

Andrea Bocelli: Music For Hope - Live From Duomo di Milano
https://youtu.be/huTUOek4LgU

A difficult choice indeed, but I believe you made the right one for your own well-being.

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