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 Post subject: Re: My experience.
 Post Posted: Sun Mar 28, 2021 6:28 pm 
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I love that song. :-) And I do hope that your good days continue -- it would be marvelous if your battle with this virus is now coming to the end!

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 Post subject: Re: My experience.
 Post Posted: Sun Mar 28, 2021 8:15 pm 
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sboots wrote:
I love that song. :-) And I do hope that your good days continue -- it would be marvelous if your battle with this virus is now coming to the end!

It's early days but all the signs are promising, that i'm even seriously considering talking to my GP and employer about a return to work this week speaks volumes for how much my head space and health has changed.

My plan is to speak to my GP first (tomorrow) to get signed off work for another two weeks, there will be no gain for me to do that as my Statutory Sick Pay ends on 4th April, rather i want to make sure that i'm free of Covid before i speak to my employer about a phased return to work.

(FYI, amazingly my wife and i still have enough savings for us to get through another 5-6 months of no income on my part.)

Should i get close to 14 days symptom free then i will talk to a line manager about returning to work, even then, my plan is to ask my employer for two weeks of the annual leave i've accrued, this will give me four weeks to make sure i am free of Covid and allow me a much needed period to rebuild my strength, both physical and mental.

I really hope i'm not getting ahead of myself but this is the first time i've felt so positive in a very very long time.


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 Post subject: Re: My experience.
 Post Posted: Mon Mar 29, 2021 3:21 pm 
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I'm so pleased to read you seem to have turned the corner Doddie, here's hoping it carries on getting better and better as the days go by. :)

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 Post subject: Re: My experience.
 Post Posted: Mon Mar 29, 2021 4:25 pm 
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Thanks Joan, i spoke to my GP today and she was very encouraged to hear what i said, she has extended my sick note for another two weeks and we both hope this will be the final extension. :D


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 Post subject: Re: My experience.
 Post Posted: Mon Mar 29, 2021 9:21 pm 
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I'm not sure why i feel the need to express what i'm about to type, other than i do.

Since Aug 23rd 2020 this has been the hardest time in my life, the struggle to stay positive when at times even i didn't believe i'd wake up the next day has been immense.

My whole perception of what people can mean to one and other has been flipped on its head... i always believed that no matter what i experienced i would find a way to work through it myself.

I never really understood why people with mental health issues couldn't cope, for me my mental health was always within my control so i am ashamed to admit, i dismissed their anguish.

Everything changed on Aug 23rd 2020.

My wife and i have found a new understanding and love for each other that i don't think either of us knew existed.

I used to be close to my sister when we were young but somehow we drifted apart, we speak daily now and it's like we never drifted apart.

I'll likely never know how close i came to death from this virus, one thing keeps haunting me about that though, what if i hadn't stop smoking two years ago?

I feel that i came close to death, in fact at times i believe i stared it in the face, that i kept on waking up everyday felt like a gift that i shouldn't give up.... believe me there were days when i thought life wasn't worth living.

To be where i am today, nothing that life throws at me will ever be the same again.


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 Post subject: Re: My experience.
 Post Posted: Thu Apr 08, 2021 3:41 pm 
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Okay, i'm hoping this might be one of my last posts to this thread....

Since i had my first shot of AstraZenica vaccine 14 days ago i have still not had any of the symptoms of Long Covid that i was accustomed too, yes i still have ongoing sleep pattern issues but i'm hoping that that will fade as time passes and my body re-adjusts to life without Long Covid.

With almost certaintity i can say that the sleep pattern issue is not related to the insomnia i was suffering from when Long Covid ran rife in my body, it both feels different and does not follow the same pattern.

In short, i contacted my line manager today and explained that i neeed another short period of time to recover adding that my SSP (Statutory Sick Pick in the UK is a state benefit and only lasts for 26 weeks within any 12 month period) had expired so for me to have income this month i would like to use two weeks of annual leave so i could extend my recovery period and be in a position to return to work on (or around) 26 April.

My employer agreed and as things stand i WILL return to work the week beginning 26th April.

Given the journey i have been on, that i am even able to type this and realise that it is actually happening, it blows my mind every time i read it back to myself.

Shocked but so very very happy.


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 Post subject: Re: My experience.
 Post Posted: Thu Apr 08, 2021 9:20 pm 
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Hooray!

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 Post subject: Re: My experience.
 Post Posted: Fri Apr 09, 2021 5:40 pm 
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Yup, i feel like:
:phant1:


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 Post subject: Re: My experience.
 Post Posted: Fri Apr 16, 2021 7:54 pm 
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Everything is still going in the right direction.

I spoke to my line manager earlier in the week about my return to work, as things stand it is now confirmed i will return to work on April 26th on a much reduced work schedule and we will take things day by day before a decision is made to decide when i can return to my normal contracted hours.

I also forgot that my local health authority would call me today to see how my progress was going... after talking to the Occupational Help Therapist it was agreed that i should be discharged from their care, neither she nor myself felt there would be any need for us to stay in contact any longer given that my progress seems to be stable.

(A cavet was added by the OHT that should i crash again then i simply need to contact my GP and my case would be re-opened).

The OHT will write to myself and my GP to confirm my discharge, that letter i will frame and display! :D


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 Post subject: Re: My experience.
 Post Posted: Fri Apr 16, 2021 9:28 pm 
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Excellent update, Doddie. May your recovery continue to progress!

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 Post subject: Re: My experience.
 Post Posted: Mon Apr 19, 2021 9:54 pm 
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Over 3 weeks since my first vaccine shot and everything is still looking good.

Less than a week now until i return to work... i'm still struggling to realise that's a reality and i likely won't accept it's true until i get there.

As each day passes i am more and more mobile and regaining my strength, the transformation since my first vaccine shot is nothing short of a miracle, i am blown away at my progress, it is far better than i had ever dared hope.

If there was one song that could explain what this feel like for me, it would be this:

Enigma - Return To Innocence (Official Video)
https://youtu.be/Rk_sAHh9s08

For eight months my health spiralled to depths that at times i never thought i would recover, had i not stopped smoking three years ago i feel certain i would not be here today.

The vaccine for me is akin to rolling back the last eight months, being Scottish the significance of the unicorn within the video is profound... it's as if my national animal is telling me, yeah you got close, but you are free to move on now.

Fwiw, i'd heard the song before but had never seen the video until now, the world works in mysterious ways.

The lyrics:
------------------------------
Love
Devotion
Feeling
Emotion
Don't be afraid to be weak
Don't be too proud to be strong
Just look into your heart my friend
That will be the return to yourself
The return to innocence
The return to innocence
And if you want, then start to laugh
If you must, then start to cry
Be yourself don't hide
Just believe in destiny
Don't care what people say
Just follow your own way
Don't give up and use the chance
To return to innocence
That's not the beginning of the end
That's the return to yourself
The return to innocence
That's return to innocence
---------------------------


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 Post subject: Re: My experience.
 Post Posted: Wed Jan 19, 2022 12:31 am 
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It's been a while and hopefully everyone is doing well.

Given that it looks like the pandemic is moving to an endemic phase (some countries are getting there sooner than others but it's not a competition!) i thought i'd give an update on where i am.

Still unemployed with no indication that i'll be ready to return to employment anytime soon... biggest hurdle right now is i can't get my sleep pattern under control so can't commit to an employer that i'll be able to turn up for shifts.

The biggest plus right now is my therapist (referred to her by my GP for post Covid PTSD) will be happy for me to end therapy next week if i haven't had a relapse.

First time i've ever had therapy, my advice fwiw, go in as an open book or dont go there at all... for me the sessions were all about Long Covid & PTSD but omg did they take me back into dark memories i didn't want to get into... but i asked for them so there was no point in glossing over the facts and truth.

I still can't get my head around the fact it was Feb 2020, neary two years ago, that i caught this evil virus and i'm still fighting to get my life back... but i am hopefully getting there.

Onwards and upwards.


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 Post subject: Re: My experience.
 Post Posted: Wed Jan 19, 2022 11:59 am 
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I am certainly hoping that we are indeed heading towards endemic phase. In my area the latest wave is subsiding, but other parts of the US are still seeing a rise in cases. My wife and I have managed to avoid infection, mostly due to the fact that we never go out and when I do the grocery shopping or other errands, I'm masked and avoiding people as much as I can. Of course, we are also vaccinated and have the booster. My wife's family in VA isn't as fortunate. Our 6 year old granddaughter got a mild case 2 weeks ago, despite being vaccinated, and that led to the other 3 in the household to develop mild symptoms, too. They are isolating and doing well. My brother in law, however, who is not vaccinated and runs an auto repair shop, also caught it after one of the employees (vaccinated) had mild symptoms, thought it was a cold, and came to work. My 80 year old vaccinated mother in law started symptoms a day later because she was at the shop when the sick employee was there. Thankfully, she seems to be doing okay.
It's good to read that you are well, though not being able to get your sleep patterns under control is certainly unfortunate.
Take care and thanks for the update as I have been wondering how you have been doing.

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 Post subject: Re: My experience.
 Post Posted: Wed Jan 19, 2022 1:10 pm 
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Nice to see you back Doddie, not so nice to hear you are still having problems. At least now Long Covid is actually acknowledged as a symptom.

I'm pleased to hear that you are going in the right direction so hopefully, you won't have to wait too long before you are fully recovered and start to get your life back.

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 Post subject: Re: My experience.
 Post Posted: Wed Jan 19, 2022 1:30 pm 
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Not an ideal solution to the sleep issue but have you talked to your doctor about sleep aids?

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 Post subject: Re: My experience.
 Post Posted: Wed Jan 19, 2022 7:35 pm 
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@Steve
Sorry to hear that so many of your family caught covid recently but relieved to hear they are recovering.
If it was the Omicron variant that infected them then they probably had a lucky escape, especially your unvaccinated brother-in-law because the Delta variant can be far more serious, particularly in the elderly.
An added plus (for want of a better way to say that) is that early studies are showing that antibodies generated (naturally) by Omicron infection also fight off previous variants, for example Omicron antibodies protect against the Delta variant.... this was something that didn't happen with previous variants, for example Delta antibodies would not protect against the Beta variant etc.

FYI: If you're new to this thread then don't read the above as an excuse not to get vaccinated, Omicron can and still is hospitalising and killing people, look at the figures for your local hospital and you'll see the vast majority being admitted and dying right now are people who are unvaccinated.

@Joan
Thanks again, yes Long Covid is at long last officially recognised but there is still precious little known about what causes it, and even less help on how to treat it. I still feel like i'm educating health professionals... i don't mind that so much now i feel confident i have a 'network' of health professionals who are willing to listen and try to help in any way they can, as you know in the UK we no longer get assigned a 'family GP' but you can request a particular GP within the medical practice if you wish.
I was so desperate for help back in October for insomnia/sleep pattern/(unknown to me at the time)post covid ptsd etc. I couldn't get to speak to the GP who'd dealt with me previously so i chose to go with another GP... and omg she was amazing, my appointment was scheduled for 4PM and i asked my wife to go with me (she is in this as much as i am), i didn't know it until i arrived but she had read my case notes and cleared her appointments for the rest of the day so we could have as much time as needed for me to explain everything. The appointment lasted for around an hour, Joan you know how rare that happens in the NHS... 1 hour+ GP appointments never happen in the UK so i was blown away, to be listened to and not feeling pressured to get out the door was amazing... it was so late when we left the consultation room the cleaners were working and all the other staff had left!
I was assigned a 'Link Worker' who works within the medical practice who i just need to contact for anything, and she will either refer me or point me in the direction for self-referrals.

@Jay,
Yes i have, she wasn't keen on prescribing 'sleeping tablets' because they can be addictive so she prescribed some antihistamine tablets (promethazine hydrochloride) that causes mild drowsiness.
I was more than happy to go along with that approach and they do work for me, the problem is when i do manange to get back into a normal sleep pattern it doesn't last long, the longest i've managed so far is two weeks.
It doesn't matter how i try to avoid slipping backwards again, it happens... do you remember Groundhog Day with Tom Hanks, well my sleep pattern is akin to my Groundhog Day.
I need to get back in touch with my GP about that, not for the first time i'm questioning myself... is there something i'm doing wrong or something i could do different?
As an aside just to show how sublime some of the advice i've had over the past two years can be, when i was referredd to the OHT nurse about a year ago, she suggested i should buy a night light to help me sleep... now i can be quite sarcastic at times but even i wasn't so cruel to throw back at her... how is a night light going to help me sleep when i go to sleep during daylight? lol

I also want to raise "encephalitis lethargica" with my GP, i'm not for a minute thinking that is what i'm suffering from, but it is a little known condition (often referred to as the forgotten pandemic) that effected millions at the same time as the Flu pandemic during 1916-17 (through the 1930's and beyond), many of the symptoms are eerily similar to Long Covid symptoms.

I want to quote this paragraph published by Oxford University in 2017 here because the end of the last sentence really caught my eye, if i'm not suffering from 'day-night sleep reversal' then i don't know what it is:
Quote:
The hyperkinetic form presented with an initial manic phase during which the patient experienced chorea, vocalizations, myoclonic twitches, and myorhythmia of the ocular and masticatory muscles. (Oculomasticatory myorhythmia is also indicative of Whipple’s disease, but it is not known whether the movement disorder seen in the hyperkinetic form of encephalitis lethargica is the same or different from that seen in Whipple’s disease). The manic phase was followed by generalized restlessness, weakness, and fatigue that persisted for days. During this hypomanic phase, patients experienced neuralgic pain in the face and limbs, visual and tactile hallucinations, and day-night sleep cycle reversal.
Edited for emphasis, source: https://academic.oup.com/brain/article/140/8/2246/3970828

I'm hoping that by raising encephalitis lethargica with my GP i just might inspire her to look for treatments for 'day-night sleep reversal' that have long been forgotten. I have nothing to lose by trying.

A final word to the wise, there are lots of images and videos depicting sufferers of encephalitis lethargica from that time period, if you're sqeemish don't go looking for them because they are not an easy watch and can be very distressing.


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 Post subject: Re: My experience.
 Post Posted: Thu Jan 20, 2022 6:59 pm 
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Sleep aids do not need to be addictive... at least not physically. Take a look at the following link but I wouldn't bother going beyond the first three or four. Of course I don't know if any of these herbal aids are available where you are.

https://i.cantsleephelp.com/?msclkid=e85264d0b8681e2158c205395f54d960

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 Post subject: Re: My experience.
 Post Posted: Sat Jan 29, 2022 1:50 am 
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jaylach wrote:
Sleep aids do not need to be addictive... at least not physically. Take a look at the following link but I wouldn't bother going beyond the first three or four. Of course I don't know if any of these herbal aids are available where you are.

https://i.cantsleephelp.com/?msclkid=e85264d0b8681e2158c205395f54d960

Thanks Jay and apologies for the late reply, i'd tried over the counter sleeping tablets and while i did have some success it was clear i needed to go back to my GP to discuss other options.

On the plus side, my therapist was happy for me to end our sessions when i last spoke to her on Monday 24th Jan, with the proviso that i call her asap if my mental health begins to slide backwards again (i'm very optomistic it won't, but given my history of this disease it wouldn't surprise me if it did.)

So, really, all that's stopping me from looking for work now is my sleep pattern... for sure i'll need to work on my physical fitness after that but i should be able to push through that especially given that my plan when i feel ready to work again is to work part-time until i feel ready for full-time employment... as things stand there is no way i could work full-time but i'm not far from attempting to work part-time.
Personally, i feel that if i can maintain a regulated normal sleep pattern then i'll be on the job market about a month later.

What a journey and experience i've been through, 2 years later and i'm still fighting but at least that distant light i saw on 25/03/21 after my first vaccine shot is getting brighter and brighter, to the point that i'm finally within touching distance of the tunnel exit.


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 Post subject: Re: My experience.
 Post Posted: Fri Mar 18, 2022 12:09 am 
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I can barely believe it's been two months since my last post in this thread, suffice that my sleep pattern is still all over the place, the prescribed meds do work for a short period of time (4-5 days max) but my sleep pattern no matter what i do always reverts back to night/day sleep reversal.
As soon as i think my sleep pattern is under control again my wake up time shifts one hour a day pushing back my sleep pattern (no amount of alarm clocks help, i sleep through them all), and so the cycle continues...

I can't express in words how frustrating this is, i feel stupid for not being able to sleep and wake when i want... e.g. It's now 4am and yet here i am, still wide awake.

If i could get over this hurdle i am confident i could look for employment, 25 months since i believe i was first infected and i'm still fighting to get my life back... if someone had said i'd be in this position when i started this thread i'd have looked at you with a blank stare believing you were crazy, and yet here i am.


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 Post subject: Re: My experience.
 Post Posted: Fri Mar 18, 2022 10:25 am 
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I really feel for you Doddie, I can imagine how frustrating it must be for you, especially after all this time.

After watching the programs about Kate Garraway and her husband Derek and what they are going through because of the virus it's heartbreaking. We are not over it yet and to be honest I have no idea if we ever will be.

I know I'm glad I'm coming to the end of my time here, the thought of what our children and grandchildren have to face is frightening.

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 Post subject: Re: My experience.
 Post Posted: Mon Mar 28, 2022 11:30 pm 
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Thanks Joan your words of support mean a lot but you'd better not be going anywhere any time soon, i still have no idea what a cross stitch looks like so i hope when i finally get over this i'll be able to drive down to Wales and buy you a cup of tea in a cafe so you can show me in person what the hell they are! :rofl2:

As for where i am right now, i'm still in the same place with my sleep pattern, i had tried Nytol again and that made no difference at all so i stopped all drugs for a week and tried antihistomines again, they worked for two days but after that every day my sleep would slip back by an hour a day until my sleep had reversed again... it didn't matter what i did to try and stop that happening, either i'd have insomnia or i'd sleep right through alarms that would push the pattern back.

I was talking with my sister a couple of nights ago, she's a veterinary nurse so has some form of medical knowledge, out of the blue she suggested i should look into Melatonin because its a hormone that helps regulate sleep... when i looked it up on the UK NHS website i was stunned to see that all but one (blood in urine, but as my sister pointed out it's not always possible to see blood in urine) of the 'common' & 'serious' side effects of taking Melatonin were all symptoms of my Long Covid experience.
I don't understand what that means (did Covid cause an increase or lower production of melatonin?) so i've reached out to my GP surgery to have my GP call me back for further discussion about both melatonin and any potential next step now i know the antihistomines don't work.


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 Post subject: Re: My experience.
 Post Posted: Tue Mar 29, 2022 8:30 am 
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Good luck with that research and I hope it does give you some answers.

I'll try not to go anywhere for a while, according to my granddaughter I'm going to live till I'm 108, to be honest I don't think I want to.

At the moment I'm busy sorting out my blood pressure, got to phone the doctor back at the end of this week with a record of what it's been for this week, I just hope he doesn't want to increase the strength as starting the stuff I'm on caused me problems with my legs and I don't want them getting worse.

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 Post subject: Re: My experience.
 Post Posted: Wed Mar 30, 2022 7:14 pm 
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JoanA wrote:
Good luck with that research and I hope it does give you some answers.

I'm drawing a blank with that, i can find some research papers where melatonin was tried in the past to see if it helped patients who were admitted to ICU with Covid-19 (it didn't) but i can't find anything that's looked at melatonin levels as a possible cause of [some] 'Long Covid' symptoms, or as a possible treatment for [some] Long Covid symptoms.
cf. The NHS website with the side effects i'm talking about can be found here: https://www.nhs.uk/medicines/melatonin/

I found it striking that when i looked at the side effects of taking melatonin (as listed on the NHS website) i suffered from every single one of them up until i had my first vaccine shot when a couple of days later all of those side effect symptoms (and more) miraculously stopped, but now i'm left with severe sleep pattern issues, which somewhat ironically the melatonin hormone is supposed to help regulate.

Whether or not melatonin has a correlation with Long Covid or not, i feel i'd be letting myself and others in the same position down if i didn't flag this with my GP.
In all likelihood i'm barking up the wrong tree, but what if i'm not? If it turned out i was on to something and the GP simply didn't know and other people suffered because i chose not to speak out, that would haunt me for the rest of my life.
If i'm wrong then the worst that'll happen is i blush and feel stupid, i'm well used to that by now lol

As you know, i have no medical background whatsoever and had it not been for being struck down with Long Covid in Aug 2020 i would still be blissfully unaware of anything medical. However because pretty much everything we know about Long Covid (and Covid-19) has been patient led, a lot of it still is and will likely continue to be for a number of years yet...
...I reached out to the 'link worker' who was assigned to me in autumn of last year by my medical practice to not only explain to her where i am now but also for her to hopefully pre-warn my GP that i'd be raising this (melatonin) with my GP in the hope that if my GP was unaware of any potential link between melatonin and Long Covid it would give the GP time to do some research for herself. The GP is the expert and has access to sources that i do not.

My link worker emailed me back on Monday morning to say that she would speak to my GP and along with setting up an appointment for a callback by my GP explain to her why i thought melatonin might be something for the GP to look at for me specifically.

Somewhat frustratingly my GP has signed off sick this week, the link worker had hoped to be able to setup a consultation with my GP for today (Wed 30th) but that now probably won't happen until next week at the earliest.

It is now 25 months since it's believed i was infected with Covid-19, and 19 months since i had to down tools and stop work due to Long Covid.
At every stage things have happened at a snails pace with seemingly endless setbacks.
The good news is i AM recovering but oh my word is it a slow road, i'm not surprised or shocked to find i've not changed lanes into the fast lane just yet.

Onwards and upwards.


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 Post subject: Re: My experience.
 Post Posted: Thu Mar 31, 2022 12:34 am 
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Location: Dunedin, Alba.
Where this came from within i have no idea, i was just writing an email to a friend in England (who i've known for over 20 years via an online motorcycle Forum but never met) and i just started typing it out.

I want to share it here because it exemplifies everything i've done and tried to do for myself over the past two years, in the hope that someone somewhere reads it and it makes a difference to them.

Quote:
This cycle was and continues to be my daily routine:

Day by day.
Baby steps.
Measure changes not in days or weeks, measure progress made over months or years.
Wake up and treat each day as a new day.
Wake up as if every day is from the film Groundhog Day.
Repeat repetitively.
Review this new day against previous months.
Keep believing.
Hope.
Sleep.
Talk to people who have empathy, reject those who do not.
There will be dark moments and days but don't let those win.
Learn what you can about the virus.
Learn to speak how medics speak to each other so they take you seriously.
Fight for yourself.
Fight so you are understood.
Fight for answers.
Fight back against this virus and never ever give up hope.


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 Post subject: Re: My experience.
 Post Posted: Thu Apr 07, 2022 9:43 pm 
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welcoming committee
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Joined: Sun Jan 13, 2013 4:13 pm
Posts: 1376
Location: Dunedin, Alba.
What follows is after i spoke with my medical practitioner, it is NOT and should NOT be considered advice, it is my personal experience and a choice i alone have made after speaking to a medical practitioner.

Always speak to a medical practitioner before taking any drugs.

Quick update: I had a phone consultation with my GP today, turns out that Melatonin is on the banned list for GP's to prescribe (at least in Scotland, i'm not sure about the rest of the UK?) and that for it to be prescribed i'd have to see a hospital specialist... which is of course not possible at this time due to non-urgent referrals being paused at this time :roll:

The GP went on to say that she would be "right behind me if i wanted to try Melatonin" and if i asked her she could give me a nudge in the right direction so i could buy some online, it took a moment for me understand what she just said because i've never had a GP ever say anything like that to me before... i'm sure you can all guess what the next words to leave my lips were... ;)

The usual caveats of only buy from a reputable pharmacy etc were explained and she could give me no other advice about dosage or advice about how long to take it other than if it works i might need to take it for a very long time. I did ask if i should start with a low dosage and increase if that doesn't work, all she would say was that would be sensible.

It all seemed a bit shady but after further research it appears it's not illegal to import Melatonin into the UK for personal use from countries where it's widely available, it's only illegal to sell and distribute it in the UK.

So, suffice i'm starting with the lowest dosage i could find on the website (3mg melatonin tablets) and will increase if that doesn't initially work.
I'll try each dosage for a week and if nothing changes after 3-4 weeks then i'll stop taking it and get back to my GP about her suggested alternative, strong sleeping tablets... a route i really do not want to go down.

The nudge my GP gave me was nothing more than a brand name, Biovea.

I have nothing to lose by at least trying it, if it works i'll be singing from the rooftops like an Italian during the 1st lockdown, and if it doesn't then i can continue development on moonglasses... that damn moon is so bright when you never see the sun!

Whether or not Melatonin helps, i will update this thread.


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