Category Archives: Medical

Medical update. Genetic testing, maybe “unexpected results” and Red Bull…

I was hospitalised for a week in May 2020 and – again for a week – in July 2021. On both occasions, my calcium level had suddenly sky-rocketed to a dangerous level which resulted in my kidney function plummeting to a very, very dangerously low level.

The only positive thing to come out of it was that the second hospitalisation resulted in a seven-day series of fairly dramatic blogs. I await offers for the TV sitcom or Netflix movie rights.

Both times when I was hospitalised, after a week of (I think) basically just saline drips, my calcium/kidney function levels returned to non-dangerous though still abnormal levels.

But the doctors had absolutely no idea why the levels had, without warning, suddenly gone mad in the first place. 

Subsequently, it was impossible to treat the problem because the cause was completely unknown.

Multiple scans, X-rays, blood tests and bunging radioactive material into my blood stream has failed to find any cause. But it happened twice. Without warning. I am taking no medication to stop it happening again nor to normalise my levels because, with an unknown cause to treat, there can be no treatment.

To add to the confusion, in February 2022, according to a blood test, without warning, my calcium level suddenly returned to pretty-much normal and my kidney function – although not 100% right – became reasonable, not dangerous and it seems to be stable. My kidney consultant said, at first, he thought he had been given the wrong patient’s results. He and my calcium consultant told me the cause of the suddenly-improved results were a total mystery to them.

The latest idea to try and find out what is going on is that I am going to be given a genetic blood test. Apparently this costs the NHS “a few thousand pounds”.

I seem to have a main kidney consultant and a second, associated, kidney consultant. In a video call yesterday, the latter told me:

“There are some genetic tests we want to do. You’ve been through every test in the book and no-one’s figured it out. It would be a useful thing to do. We’re just looking at a certain panel of genes.

“The thing about genetic tests,” he added, “is  they can sometimes throw up unexpected results or sometimes unwanted results. It’s unlikely in this case, because we’re not looking at everything; we’re only looking at things to do with calcium – the panel of genes that control calcium.

“But, even then, we have to warn you that there’s a possibility it could throw up unexpected results, OK? Theoretically that could have implications for family members.”

I am uncertain whether or not this means I could discover I am related to Adolf Hitler or that I am a member of a previously-unknown alien race.

“The results,” the doctor told me, “could take ages: it could take six months, something like that. It’s not going to be fast; and then we’ll take it from there. It’s going to be very exciting to try and find the results. You’re only the third patient I’m doing this on.”

I’m not sure whether I should be gratified or worried by that.

One thing no-one seems interested in is that I felt ‘light-headed’ – a sort of woozy, floating, uncertainly-balanced feeling inside my head – in the lead-up to my first hospitalisation in May 2020 and this continued until roughly New Year this year, 2022. 

In March 2021 – in fact, for a few months – I had occasional, very serious vertigo – having to hold on to the walls or anything static to avoid falling over while the world whizzed around me. This went away after a few months but the slightly unbalanced and unbalancing feeling inside my head continued until…

In around October 2022, on a whim, I started drinking a can of Red Bull in the morning. 

As soon as I started doing this, the wooziness in my head decreased then stopped and, since then, I drink a can of Red Bull every morning with breakfast. My balance is better; in fact, my balance is now fine.

I never drank any Red Bull between the lead-up to May 2020 and October 2022 (remember I was hospitalised again in July 2021). So the Red Bull could not have contributed to my problems but, bizarrely, it seems to have helped alleviate some (I guess side) effects. 

I think I have read that Red Bull – basically it’s caffeine and sugar – can be dangerous because it speeds up the heart. But, as my heart beats quite slowly – in the low 50bpm when resting – this might not be a bad thing.

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The surreal UK Covid-19 self-isolation advice: Franz Kafka meets Catch-22..

(Image by TheDigitalArtist via Pixabay)

On the morning of Christmas Day, I tested positive twice for Covid on a lateral flow test, although I had no symptoms. That same day, I was able to walk in to a PCR test area and get that more definite test. Two days later, that test, too, came back positive. 

I had taken two lateral flow tests (morning and evening) on Christmas Eve which had been negative.

Current UK government guidelines for England said I should isolate for up to ten days from my first positive test. ie until Tuesday 4th January. But, if I took a lateral flow test which was negative on Day 6 and, 24 hours later, on Day 7, the rules said I could stop self-isolating.

On the evening of Christmas Day – the day I first tested positive – I had some internal flu-like shivers overnight; and the next night some lesser internal shivers. And, for the first four or five days of self-isolation, I had a new and persistent hard-edged hacking cough. 

But, by Day 6, I was back to having no real symptoms. 

However, on Days 6 and 7, I still tested positive for Covid.

Positive, too, on Days 8 and 9.

On Day 9 – that’s today – I phoned the government’s 119 Covid advice line because my attention had been drawn to the government’s own online advice, updated on 30th December.

The online advice said (and says):

“You should not take any more LFD tests (ie lateral flow tests) after the 10th day of your isolation period and you may stop self-isolating after this day.”

But presumably only if you test negative?… No. It doesn’t say that.

It continues:

“This is because you are unlikely to be infectious after the 10th day of your self-isolation period and should not take any more LFD tests after this date.

The italics are mine. And there is no time period mentioned.

What is said – and still clearly says – is that you should stop self-isolating after 10 days come what may and, in theory at least, you should never again under any circumstances at any point take any other lateral flow test.

Obviously that cannot be the intended advice – that you should never again take a lateral flow test. 

But the advice is clearly that, whether you test negative or positive on Days 9 and 10, you should stop self-isolating and re-join society.

This sounds mad and, I thought, cannot be the actual advice so, like I said, I phoned the 119 Covid advice line set up by the government.

Their on-the-phone advice was that, as a person triple-jabbed with vaccine, if I test positive on Day 10, I should self-isolate for 10 days although I could un-isolate if I test negative on Days 6 and 7.

“But,” I said, “the government website says I should not take a lateral flow test after Day 10, so I won’t be able to know if I test positive or negative on Day 6 and 7 of the new self-isolation period without taking a lateral flow test which, the advice says, I should not do.”

“That’s right,” I was told. “You should not take a lateral flow test after Day 10.”

“But, if I have to self-isolate after testing positive on Day 10, tomorrow, how can I know on Day 6 or 7 of isolating if I am positive or negative?”

“If you are negative you can stop isolating, otherwise you have to keep isolating until Day 10, at which point you can stop taking the lateral flow tests.”

“But I would not know if I were positive or negative without taking a lateral flow test and the government says, after Day 10, I should not take a lateral flow test.”

“If you do test positive, you have to isolate for another 6 days or until you have done 10 days in isolation and then you can stop isolating and do not have to do the lateral flow tests.”

They say Frank Kafka died on 3rd June 1924. I am not sure. 

I have always been attracted to surreality but there are limits.

I am going to return to daily life after Day 10 while keeping a healthy, well-masked distance from people and will wantonly keep taking daily lateral flow tests even though I have no symptoms. If I have two consecutive days where the tests have negative results, I will feel less wary… though not of bureaucracy.

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Having Covid now in the US – Day 19

(Photograph by Gerd Altmann via Pixabay)

A couple of days ago, on New Year’s  Eve, Mick Deacon appeared in this blog – He is an Englishman temporarily living in the US.

I am currently self-isolating in the UK because I tested positive for Covid on the morning of Christmas Day. Currently in England the rules are that, if that happens, you have to isolate for up to 10 days, though you can re-emerge if you test negative- 24 hours apart – on two consecutive days from Day 6 onwards.

I am currently on Day 8, still testing positive, though I have no apparent symptoms.

In the US, Mick is currently on Day 19 of being infected.

He has symptoms.

I thought it would be interesting to extract his progression from the various emails he has sent me.

He is over in the US temporarily to see his girlfriend. 

His first e-mail references him returning to the UK at some point… He had his first two vaccine jabs in the UK but his third jab – the booster – in the US.


DECEMBER 13th 2021

I hope I won’t have problems on the way back as I’ve had the booster here. I told my UK GP’s surgery the day after and they said just bring the card in and we will add the details. 

DECEMBER 16th

I got Covid a couple of days ago. I’m going with the notion of I might as well get it over with now and hopefully get more immunity.

It is like being hit by a truck while someone sticks needles into you whilst barely having the energy to stand up. Not an attractive cocktail. 

I have now had the two AstraZeneca jabs and the Pfizer booster but it was just over a week after having the booster when I got Covid. So maybe it had no time to kick in.

I’ve got health insurance but am trying to not see a doctor. Being ill in a foreign country, even with insurance, makes you feel very vulnerable. 

I am isolating and better than I was yesterday thankfully. 

My girlfriend hasn’t got it but it’s weird isn’t it? My handyman in the UK got it the eve he had been working at my place and everyone else apart from me got it, I felt kinda smug and healthy at that point. 

Over here, people on the whole aren’t careful at all. Bloody Americans.

DECEMBER 19th

It’s quite strange… Mornings are the worst – very weak and dizzy but, with the help of painkillers, the day begins to get better. 

The fatigue is horrendous but I’m improving and I can string a sentence together now in the morning which at first I couldn’t. 

I don’t like being ill and abroad, but there’s nothing I can do about that now. 

It is bloody awful.

DECEMBER 23rd

Still testing positive for Covid. Just waiting for the results of today’s test. 

DECEMBER 25th

Merry Xmas 

I kinda looked at it like, by the law of averages, I was going to get it, so thought it was better to get it over with – to look on the bright side! 

DECEMBER 27th

Just got a cough now that doesn’t want to go.

I get tired quite quickly, but improving. 

DECEMBER 29th

I had one good day when I thought it was all done with. Then I started coughing again and I feel shattered again. Not as bad as before though. 

DECEMBER 30th

Weirdly, the last 4 days, I keep getting bouts of nausea and coughing fits and fatigue. 

I don’t think my booster had time to kick in before I got this. I was only on day 7. 

Numbers are raging here, but they are just carrying on with everything. 

JANUARY 1st, 2022

I was really ill yesterday. I keep having attacks of nausea, headache and stomach ache. Feel very weak again today. I was already worn out when I first got this, so it’s slightly my own fault. 

I just fell asleep for 2 hours. Not like me at all. 

JANUARY 2nd

I keep waking up with a bad but peculiar-feeling headache and I keep getting bouts of really bad stomach ache and nausea…

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An Englishman in the US with Covid reflects on some cultural differences…

(Photograph: Alexandra Koch via Pixabay)

Back in November 2018, I wrote a blog about a man I know called Mick Deacon, an Englishman visiting the US; he has a girlfriend there – possibly an ex-girlfriend. 

Back in 2018, he was talking to me about the US mid-term elections. At the time, he was living in the working class heartland of Donald Trump’s America. 

Recently, he went back to the US to re-visit his girlfriend – possibly ex-girlfriend – in the same city.

Donald Trump is no longer President and, replacing him, the Covid-19 pandemic has been getting all the headlines worldwide.

Mick currently has the relatively new Omicron variant of Covid.

We chatted via FaceTime.


TUESDAY 21st DECEMBER

JOHN: You look very healthy.

MICK: I certainly don’t feel it. I feel absolutely awful. It came on really fast. The first day I just thought Oh! I’ve got a cold! That’s weird! because I had not encountered anyone with a cold, I had been wearing my mask and I just thought: Oh, that’s a bit odd! That first day, I just went to bed.

Then it came on at a rate of knots.

The following day I thought: I REALLY don’t feel well! It was like total exhaustion. My legs could barely lift me up. It was like flu times three. My head was pounding; like someone sticking little needles into your head. So I took a lateral flow test – I had brought a box with me from the UK – and it was positive. I had never had a positive test before.

JOHN: Had you had the ‘booster’ jab?

MICK: Yes, but I don’t think my booster had had time to kick in before I got this. It was on day 7 after the booster. 

I got the booster vaccination here in the US which was relatively easy, possibly because my girlfriend had had a chat with a bloke at the clinic and had explained the situation. 

Even so, they started off with the attitude: Ugh! This is gonna be really complicated because you’re English! 

They asked me: “What’s your Insurance Number?’

“I haven’t got an Insurance Number, because I’m English.”

“Oh… uh…”

I thought they weren’t going to give me the injection, but then the guy who my girlfriend had spoken to went: “Right. It’s fine. We’ll just do it.” And there was no charge. I mean, they sometimes pay people to have it here; sometimes they pay you $100 to have the jab. Unfortunately, that doesn’t apply to us Brits in the US.

Anything you think you have to do like a PCR test, if you go to the testing place as a British person, it’s like: “Can I see your, erm, your card, your ID… Well, that doesn’t look like a…”

“Well, no, I’m English…”

“I’ve never seen one of these before…”

“That’s because I’m English. I’m a tourist. A visitor. You allow visitors now. From across the sea.”

You just don’t want to have that administrative headache unless you have to.

My girlfriend said to me this morning: “I’m going to take you to hospital.”

I told her: “I don’t want to go to the hospital. I am managing it.”

If I suddenly got worse, I would have to. But, as an English person with insurance, you know that, even though you’ve got insurance, it isn’t going to be easy because… I had an accident before where I burnt myself on a kettle in the US… The insurance company took two years to pay out.

You really really really don’t want to have to go to the insurance company because it’s never simple. You have to jump through so many hoops.

People moan about the NHS back in the UK, but it’s always there. It’s horrible being ill abroad because that safety blanket of the NHS is not there. 

JOHN: The medical side of the NHS is wonderful, but the bureaucracy is horrendously incompetent. Like all bureaucracies.

MIKE: I really don’t want to end up in hospital in America.

JOHN: You told me Lateral Flow Tests, which are free in the UK, were $20 for two in the US.

MIKE: Yes. Thank God President Biden is now saying we can have the Lateral Flow home tests for free from today. But, as a British person, I probably can’t get them. 

JOHN: When did you first test positive?

MIKE: It started on Tuesday last week, so it’s a week today.

JOHN: You’re still testing positive…

MIKE: Yeah. As of this morning. I don’t have a very good immune system, which is why I’ve been so careful in the past.

JOHN: I know you reacted badly to the second jab…

MIKE: First and second. I’ve had pneumonia in the past and other stuff and it takes me a while to get better.

JOHN: I’ve always been pretty healthy. Just this calcium/kidney problem for the last two years. At least your mind seems clear.

MIKE: Ha!

JOHN: Someone else I know in the UK has it: Jane Hicks. You know her?

MICK: No.

JOHN: She got it last week. She says she has no energy; she feels like a rag. She also had it early last year – around March 2020 – and her sense of taste and smell hasn’t really recovered from that even now. She’s got it again despite the fact she was triple-jabbed.

MICK: She’s got Omicron this time?

JOHN: Apparently when they do the PCR test, they just say you have the Coronavirus; they don’t tell you which variation.

Also a friend’s 10-year-old daughter had it about a couple of weeks ago. She got over it but, as of about an hour ago, her stepmother has it. But her mother hasn’t got it – and the kid slept with her mother for all of her 10 days of isolation. 

MICK: Her mother was triple-jabbed with the vaccine?

JOHN: Yes but so was Jane Hicks and the 10-year-old’s stepmother.

MICK: My girlfriend refuses to take a lateral flow test. She says: “I’m OK because I’ve had three jabs.” But, then, so have I. And I got it. 

I took two tests this morning. My girlfriend says she has no symptoms so doesn’t need to take the test.

JOHN: But there are asymptomatic people roaming about possibly infecting people.

MICK: Absolutely. I’ve told her she could be carrying it. But she says: “No, I’ve got loads to do. I’ll just get on with it.”

She doesn’t take any tests. She thinks she’s invincible because she’s jabbed.

She’s just going round doing what she wants to do as normal. She’s going to the Capitol today because she’s buying a plot of land to build a house on. She wanted me to go with her. 

I said: “It’s not fair is it, if I go and somebody catches it off me, because I definitely have it.”

There are hardly any precautions here. A blissful sense of Oh! It’s not happening here!… and then it is and then it isn’t… It depends who you listen to. You listen to the News and it’s Omicron is coming! Omicron is coming! It’s like…

JOHN: …a Coca-Cola commercial.

MICK: Everything that happens in Britain happens here but a bit later… when you realise it. But they don’t seem to realise it until way after the horse has bolted.

JOHN: The British News yesterday was saying that, in America, the sudden announcement had been made that Omicron was all over America, as if from nowhere.

MICK: Yeah, that’s what it was like. They said: “Oh, we’ve found one Omicron case” and then…

JOHN: So what’s your downmarket neighbourhood like? Are they anti-vaxxers?

MICK: Errr… It’s kinda like… It’s kinda kept like a bit of a secret, I think, as to whether you are or you aren’t.

I am 100% certain I caught this from the bar that me and my girlfriend go to every Sunday. She insisted I go. I said to her: “It’s terrifying in here, because there’s at least 70 people here and only six of us with masks on and people are sweating all over me, dancing behind me. The sweat was flying past me. People came up and just grabbed and hugged her – and me.” 

JOHN: Very un-British.

MICK: I remember thinking last Sunday: Right! Which one of these is going to give me Covid? When I came down with it on the Tuesday, my girlfriend said to me: “It’s when you’re out on your bike, cycling to the park. That’s when you’ve caught it. The virus is airborne.”

I said: “I didn’t catch it outdoors when there’s just me cycling along alone.”

JOHN: She thinks out in the fresh air you’re going to catch it but in a crowded bar you’re not?

MICK: Yes. In a crowded bar with sweat flying through the air. She thinks that’s fine. You won’t catch it if you’re vaccinated. People of all ages… no masks on. In Britain, at least we step back a bit from other people. I always just air-hug friends in Britain. I mean, they’re still gonna have Mardi Gras in New Orleans!

JOHN: When’s that?

MICK: This coming March. They were talking about it on the TV this morning and I thought: Is everyone here mad? Because Omicron is well-and-truly on its way. Last year there were really high numbers after Mardi Gras. People come from all over and from different countries. It spread like wildfire last year. New Orleans was one of the worst places.

JOHN: Scotland has just cancelled Hogmanay in Edinburgh. The Scottish government didn’t like the thought of 20,000 people hugging each other.

MICK: Well, all that hugging – it’s very un-Scottish.


That conversation took place on 21st December.

It is now New Year’s Eve, 31st December.

I got in touch with Mick again last night to see how he currently is. It is now 17 days since he first tested positive. 

He told me: “The last four days, I keep getting bouts of nausea and coughing fits and lots of fatigue.”

In the ten days since we had the blog conversation above, the 10-year-old’s father has tested positive for Covid; the 10-year-old’s mother has tested positive; and, on the morning of Christmas Day, I tested positive for Covid. All three of us had been triple-jabbed. I am currently in self-isolation, as required under the current rules.

… CONTUNUED HERE

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Now the UK National Health Service wants me to attend a nuclear facility…

My last blog was about the reliability of the NHS – You can always rely on their organisational arrangements to be in total chaos.

Basically, I was told that a Renal hospital appointment I never had was being moved to a date which doesn’t exist. I was told that the new appointment was on Tuesday 20th November – but 20th November is actually a Saturday. 

The same message also said I should attend the “Kidney & Urology Dept on Wednesday”… with no time nor date mentioned.

Neither the previous non-existent appointment nor the previous non-existent new date were on a Wednesday.

None of the above has been sorted out yet.

So imagine my lack of surprise when I got home around 8.00pm last night to find I had received a letter about a totally different new hospital appointment unrelated to the other two (or it might be three) previously confused appointments.

I have ongoing calcium level and kidney function problems which put me in hospital last May and this July. 

The previous confused communication had been about the hospital Renal (ie Kidney) Dept and the Kidney & Urology Dept.

This new missive was about a forthcoming appointment with the Nuclear Medicine Dept at the same hospital with which, on Monday 29th November, I now have an appointment to have a Spine and Hip Bone Density scan or, as the letter says, “Bone densitometry DXA”.

This scan has never been mentioned before at any of my chats with my Kidney Man and my Calcium Man – and neither have my spine nor hip been a source of interest – but I’m prepared to believe it’s a legitimate part of the search for what’s wrong with me. I had a PETscan at the same Nuclear Medicine Dept in August this year. A PETscan is the one where they inject radioactive material into you and then (as I understand it) look at it circulating in the body.

I have been told by two separate consultants that I am a “man of mystery” because no-one has any idea what on earth the cause or causes of my calcium/kidney problem is/are.

This means, among other things, of course, that I cannot be treated because they have no idea what they should be treating. They know the result of my problem but they have no idea of its cause.

The actual doctors seem efficient and thorough.

But the NHS bureaucracy – like all large bureaucracies – is a catastrophe of incompetence.

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More UK National Health Service chaos: my life is in their incompetent hands…

In hospital in, erm… who knows when?

As long-suffering readers of this blog will know, I was in hospital for seven days in May last year and again for seven days in July this year with a very high calcium level and (as a result) dangerously low kidney function.

No-one has been able to find out the cause. So I keep seeing consultants, mostly kidney and calcium men.

My kidney/calcium levels are pretty-much but not-quite back to normal now. But, still, no-one has any idea why they twice went dangerously haywire.

I wrote a blog in August this year when I simultaneously got three completely self-contradictory and chaotic letters about NHS hospital appointments.

Doctors, of course, like to use posh names, so ‘kidney’ staff are usually called Nephrology or Renal staff… and ‘calcium’ staff are usually called Endocrinology staff. In what follows, I have anonymised the hospital names as Hospital A and Hospital B.

In September, I was told my next appointment with the Nephrology team (my Kidney Man) would be on Monday 13th December at Hospital A.

Then, this afternoon, I got a text from Hospital B, which is part of the same group as Hospital A: 

Renal means Kidney.

The message concluded:

“Please attend Hospital B, Kidney & Urology Dept on Wednesday. TO RESPOND please follow this link…”

I did and responded:


I’m confused. Can you clarify?

I have an appointment to see Nephrology at Hospital A on 13th December at 10.30. (See attached letter.)

I had no appointment to see the Renal Dept at Hospital B on 16th November. 

And the ‘new’ date you give – Tuesday 20th November – does not exist (20th November is a Saturday).

You also seem to ‘confirm’ I should attend a Kidney & Urology appointment at Hospital B “on Wednesday” (no time given but presumably either Wednesday 10th November this week or an unknown Wednesday in December).

Could you tell me if the ‘new’ Renal appointment on Tuesday 20th November (a date which doesn’t exist) is the same as the Kidney & Urology appointment I have never previously heard about at an unknown time this Wednesday 10th November?

If I do have to attend Hospital B this Wednesday, could you give me a time for the appointment?

John Fleming


I await a reply with open-mouthed interest but little hope of efficiency or factual accuracy… It is always a tad worrying when your life and death is in the hands of large impersonal bureaucracies… All large bureaucracies are inherently incompetent…

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My difficulty in self-isolating before a minor hospital operation during Covid

(Photograph: National Cancer Institute via Unsplash)

I am probably going to have a minor operation at a local hospital next Friday.

I say ‘probably’ because, when I was phoned-up at around 8.30pm last Thursday night (three days ago), I was told the operation could not be 100% confirmed until Tuesday (two days from now).

I say the ‘probable’ operation is at a ‘local’ hospital though, to get there, I have to travel on two trains.

Anyway, because I am probably having this minor operation on Friday, on Tuesday afternoon I have to go to the same hospital and have a Covid test – just for safety. The result will be known two days later.

After having the Covid test on Tuesday afternoon, I will need to self-isolate for the rest of that day and for the whole of Wednesday/Thursday before turning up for the operation on Friday morning.

This is, of course, to avoid my being infected by anyone between having the presumably negative Covid test and the operation.

Which is fine…

Except, of course, that, after the Covid test on Tuesday afternoon, I will be taking two trains to get back home.

And, on Friday morning, I have to turn up at the hospital by 08.00, which will involve me travelling on two fairly-crowded early-rush-hour trains to get there.

So I will be potentially exposing myself to infection.

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My eternally-un-named friend had an idea to get me to keep my mouth shut…

Those who have read my appropriate blogs will know I was hospitalised for seven days last May and seven days this July because my body suddenly developed very high calcium levels and a dangerously low kidney function. 

As a result, I have not had a full night’s sleep since June 2020. I wake up every hour throughout the night, dehydrated – my tongue and the inside of my mouth as dry as the Sahara Desert.

The doctors still do not know the cause of my calcium and kidney problems.

Inevitably, my eternally-un-named friend has recently been looking on the internet for explanations about dry mouths and has decided, with little evidence, that the problem is that I sleep with an open mouth.

The passages inside my nose were severely buggered in my teens by an overindulgence in Vicks Sinex Nasal Spray.

“In your bathroom cupboard,” my eternally-un-named friend told me yesterday, “there is one of my black hairbands. Put it round your head when you go to bed at night. It will keep your mouth shut.”

I tried to persuade her that a hairband is impractical for me because I have no hair on my head, but she would not be swayed.

She got an old photo she took of me and sent me a visual representation of how I should wear the hairband as a medical aid…

She helpfully added: “My hairband does not have a bow.”

I found the hairband in my bathroom cupboard. I tried her suggestion. It is not a good look. Life is a trial.

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Medical stuff, a fairground ride in my head and my normal abnormal…

After my recent jolly week in hospital, I seem to be back to my normal abnormal.

I try to go to sleep at night but it takes a bit of time. Then I wake up after two hours, go back to sleep and then wake up again every hour all the way through the night.

My normal abnormal.

Fortunately, I have not had serious vertigo (which I first had in January) since 1st June…

…until a couple of days ago.

In the afternoon I was feeling a bit unsteady. It was as if my brain were padded with suffocating cotton wool but I was also lightly swirly inside my head. So I went upstairs to my bedroom to lie down. 

When I did lie down on the bed, it was as if the soft brain tissue inside my head started whizzing round-and-round in a circle, faster and faster, parallel with the pillows… like a bicycle wheel or a fairground ride whizzing round and round, faster and faster, parallel with the ground but with centrifugal force trying to spin it off out of control and out of my head. 

I was able to stop this by lying on my left side not my right side, with my left ear on the pillow instead of my right ear; and by sitting up.

Around teatime, I was standing vertically again, so OK and went out thinking fresh air might help, but was a little wobbly inside my head, as if my brain were telling me it was not altogether in total control of how my feet worked nor safe controlling my overall balance.

I went to bed around 8.30pm and got to sleep around 12.50am, then woke up around 2.50am with my tongue, the roof of my mouth, the insides of my cheeks and my throat all parched totally dry – no lubrication, no liquid of any type anywhere. And I woke up once every hour through the night with the same thing, having to drink water to stop the parched mouth.

So, as I say, back to my normal abnormal.

Going to the toilet, I was a little unsteady on my feet. Going from my bedroom door to the toilet door, I pass the top of the stairs and, for safety, made sure the ends of my fingers touched both the edge of my bedroom’s door frame and my toilet’s doorframe, just in case I toppled into the gap between and fell down the stairs.

Swings and roundabouts, though.

There are the dreams.

For most of my life I went to sleep very fast at night and slept soundly, waking very slowly in the morning. What this seemed to mean in practice was that I was never aware of having dreams. Perhaps once every six or nine months if I was awoken in mid-dream by something like a noise or whatever.

So I think back then, because I went into deep sleep quickly at the start of the night and took a long non-deep-sleep time to wake in the morning, I never remembered dreams.

I always wished I could remember my dreams, because I like surreality.

Now, waking up virtually every hour throughout the night, I sometimes do remember the dreams. But they are not surreal. They are realistic, narrative and linear.

Swings and roundabouts.

Perhaps now, when I’m awake, it feels surreal. And, when I’m dreaming, it seems real.

The kidney doctor is phoning me tomorrow.

Their latest guess is it might be renal sarcoidosis but, as this has been going on for around fourteen months – since at least June last year – that’s just another guesstimate to explore.

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Filed under Medical, Psychology

A slow UK handclap for the continuing bureaucratic incompetence of the NHS

A standardised NHS container designed for taking the piss

As regular readers of this blog – particularly some recent blogs – will know, I have a very high opinion of the medical staff working in Britain’s NHS.

Equally, I have a very low opinion of all large bureaucratic organisations, of which the NHS is one.

This year I have written several blogs about the NHS’ wild incompetence.

I currently have high calcium level and low kidney function problems which have been going on for over a year – since at least May last year. And the doctors have still got no idea what the cause of the problems is.

That is fine. They are trying.

But it means I have to have dealings with the bureaucratic side of the NHS.

Yesterday I received three letters in two envelopes from the NHS, all dated four days before.

I have had a longstanding appointment to see a kidney specialist in my local hospital at 1030 on Monday 20th September.

The first of the three letters was from my local hospital and cancelled that appointment.

The second letter (contained in the same envelope as the first) was from the NHS Trust/Group to which my local hospital belongs. It said I should ignore that first letter cancelling the appointment. The appointment, it said, was not actually cancelled. I had been put on a waiting list and the appointment would be rescheduled.

The third letter, also from my local hospital and dated on the same day as the previous two, said I now had a confirmed appointment at 1030 on Monday 20th September.

The eagle-eyed may have noticed that is the same time and day as the original appointment which had been cancelled. Sorry! Not cancelled but to  be rescheduled.

I am not 100% certain if the first and second letters are referring to the third letter and the appointment no longer exists.

Or if the third letter refers to the first and second letters and it is rescheduling the appointment, which is now confirmed to be once again on Monday 20th September 2021 at 10.30.

I live on the outskirts of London. All three of the above letters from my local NHS hospitals were posted to me from the NHS in Bristol. 

I have no idea why and, I suspect, neither does the NHS.

The many-headed Hydra of mythology (The Farman Collection, 1987, via Wikipedia Commons)

 

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Filed under Bureaucracy, Medical