The Guillain-Barré Experience
Fairly Delirious Bedside notes. (January 2009 Transcripts.)
T’was the Sunday before Xmas, and I felt fine except for that mousy tickle in the throat that signals a cold. It turned out to be the elephantine 2008 Credit Crunch Flu.
After the usual revolting 10 days of hacking up bits of lung and draining vast amounts of snot from my head, the virus decided to get creative and started hurting. In my case, Influenza had never got the hang of using pain as a plaything, this time it did. So much so that just when I thought I was getting well and about to get my first decent sleep for over a week, my nights were destroyed by a massive pain in my back. Then the virus decided it would be fun to set my right shoulder on fire. Doses of various painkillers, including Ibuprofen and Co-codomol, didn’t work.
After several calls to NHS Direct, 2 sets of prescriptions, a home visit from my doctor, and 3 more nights without sleep, during which time the virus ravaged my back, arms, legs and neck, it was decided that I should try the delights of Morphine and 24 hour supervised pain-relief at King’s Hospital.
Stroke Ward. 09/01/2009
By 3am I could hardly tell the groaning from the coughing from the snoring, farting, shitting, pissing and puking. And there were only four of us in the ward, and I wasn’t making any noise at all. I was just here for rest and pain-relief.
Opposite me was the noisiest, Peter, a registered diabetic who kept demanding hot chocolate as his bedtime drink. He had the worst night of all of us, by far, if noise is any sign. Next to me was merely a pile under the blanket who coughed and groaned now and then. Opposite him had been a green, dank man with a mass of grey hair known as Mr Millet who vanished disconcertingly without my noticing and was replaced – with a lot of clanking and banging at about 4am just as things were settling down a bit and the rest of us were getting some sleep. And so the long day began.
Mr Mullett, like me and Peter, had been admitted for observation and aftercare following heavy doses of the Lehmann’s Vintage 2008 Influenza Virus, by the sound of us. A very good year for bad things. Only Mr X next to me seemed to qualify for his bed in the ‘Friends’ Stroke Unit’ at King’s College Hospital in Camberwell. But I was having doubts about my status. After 4 injections of Morphine to suppress my pains, my face had stopped working.
How I got here is a blur, but I was as delighted as anyone wracked with pain could be, and when the first dose of Laudanum took effect I was like a dog with two cocks. Bright as a newly-painted picket fence. Or, as I would have said if I’d tried: “A newly Gainted Gicket Vence.”
Because I had suddenly lost the power of pucker altogether. And as the night drew in, and my virus kept demanding its Morphine, my jaw grew slacker and my lips flabbier until I was forced to talk like a ventriloquist, and chew my breakfast toast with help from my fingers, and drink by slurping – Mafia espresso style.
So had I suffered a stroke or not?
[First dose of Temazepam]
Too stupified by virus to write any more. A combination of exhaustion, constipation, burning flourescent light on the clashing purple and green ward colour scheme. (No migraine sufferers welcome). Hard to imagine worse lighting for a place where sick people are trying to get some peace. But I had become ultra-sensitive to it overnight. No eye-masks or bedside headphones either.
My doctor visits and tells me I haven’t had a stroke, and that the facial collapse is just the virus running its gamut. Is there no end to this Bug’s fucking talent? It’s a regular Roy Castle Virus. After it’s finished tearing apart your lungs and sinuses, it starts jabbing your muscles and joints with red-hot needles. And even after the finest that Afghanistan can offer has quelled the pain, it realises that it can also torture you with numbness. So it makes it impossible for you to speak or eat, or whistle, see, wink or eat properly, taking away your basic Humanity.
The only joys of Morphine, in my experience, are anaesthesia and concrete constipation. To be free of pain is a blessing, but the frozen lead bowels soon rain on that parade. You can’t eat or enjoy anything much.
I decide to watch ‘Match of the Day’ in the dayroom. It seems I’m the only patient using this sanctuary from the medical equipment and radiation. I meet a Cypriot lady in a fur coat whose Mother and Daughter are both here at the same time.
Aston Villa 2 – West Brom 1. Not that I cared. I just wanted some relief from the ward, and to feel some different colours – the green of the football pitch mainly. I did expect Man Utd v Chelsea, which is on tomorrow. Maybe Wayne Rooney can cure me.
The Cypriot lady tells me that her 77 year-old mother has had a massive heart attack, and now has pneumonia. I try to ‘exmlain‘ that I’m so ‘stumified‘ by the Virus that I can hardly relate to anyone. She understands, and tells me that the doorkeeper won’t let her back in if she goes out for a cigarette. Which is a weird policy.
Angels and Devils
Nurses seem to come in extremes, and it’s partly true. Caring and Efficient Vs Callous and Bungling.
Piss bottles sitting on the same table as a patient eating his breakfast. Repeatedly.
Diabetics repeatedly given tea with two sugars on demand.
Lights left on day and night.
No sign that bedridden patients have their teeth brushed.
Pluses. This is not a mixed ward. Perfectly obvious after Night 1 that a mixed ward would be hell for both sexes, especially in a multi-cultural city like London. For a genteel Indian lady to be subjected to the noises of three uninhibited men would be an extra torture for her, and her presence would be a torment in return.
Temazepam and Morphine Dream.
Jak and I come back from a short trip somewhere to ‘our’ flat. I’m in the same howling state I was a week ago, and this annoys my cousin Meirion, who is staying in the spare room, and who has lost one arm somehow. He comes in and makes his feelings known before storming off to a bar to play pool.
Jak is asking “Is this Me?” Very depressing.
Temazepam does help you sleep, but not through pain. That takes Morphine.
Night Sounds. 5th Floor. (Sunday night Monday morning)
Every night is broken by many sounds. Mostly the metallic clanking of trolleys, blinds and chairs, but also the electronic beeps of patients requesting attention.
But about 7am, the giant cicadas start chirruping like the soundtrack to a Tennessee Williams adaptation, and a man in the dark screams ‘Help! Help! Help!’. Which sounds exactly like ‘Hell! Hell! Hell!’.
When I ask, it appears that the chirruping is the ward fridge on the blink. The same nurse tells me that the man is screaming because he likes to scream…
My eyelids have stopped working properly, along with my mouth. So now I seem to be crying a lot. Maybe I ‘like‘ to. I have to administer eye-drops every hour to stop myself going blind.
I’m all excited about seeing Manchester United beat Chelsea 3-0 when the call comes to pack up and move wards. It seems a genuine Stroke victim needs my bed. I am there on false pretences, like Phil and Pat and Pete, but the principle seems to be ‘last in – first out’. I am redundant 1970’s style.
I’m wheeled in comfort to my new ward on the promise of a dayroom with a TV to watch the match. For a dodgy few seconds it looks like a mixed ward, as I have to go past 8 rows of sick women to get to my new home. After unloading my stuff I look for the TV, which doesn’t exist. So I negotiate someone to walk me the furlong or so back to RB121.63, where there’s still time to catch an episode of The Royle Family – Anthony’s 18th Birthday episode, where Jim bursts into a full version of ‘When You Were Sweet Sixteen’
As the final whistle blows on the match, I order my porter to wheel me back, as agreed. Sorry. There’s been a ‘misunderstanding’. I’ll have to walk all the way back as well. So instead of making one journey in comfort, as I suggested, I waste a porter, and make two needless, cold, exhausting treks.
The bureaucracy is beginning to get to me.
The new ward is a traditional 16-bed 1950’s ‘Doctor in the House’ style affair in vivid green and purple, divided now between Men and Women. It reminds me of the wards I was in as a boy, having my tonsils out. Which is comforting.
Next to me is James, a frail black teenager who wants to know who scored in the match. Opposite is a 100 year old man with unreadable tattoos all over his skinny arms, and tubes and catheters everywhere. He looks like I feel. I can’t identify with how he feels.
At least the walls aren’t green.
As with last night, the Temazepam wears off as the pain kicks in. I order a Morphine shot and the dreams start.
This time I’m in Camberwell. I escape somehow from the hospital and someone procures a Corona cigar for me. The guys in the ‘Friends Stroke Ward’ had been reminiscing about cigars. I smuggle it back into the hospital, where it somehow gets slightly damp. I hide it in the bedside cabinet.
Another dream takes over. This time there’s a crummy festival of some kind on Camberwell Green. A slick but lousy band is playing. The singer wears a cowboy hat. The crowd are identical shadowy batches of Yoof. They are a pain in the arse.
I wake up and I have several pains in the arse and elsewhere. I ask the passing nurse for some Paracetamol – or something to make me sleep. – Too soon. But I can have some Junk if I want. It’s 5a.m. Medication is at 6. Why don’t I wait?
There is a station in this ward. The night-nurse’s computer mouse skitters and clickety-clacks through the dark shift. The toothless creature is talking in his sleep. A sort of ‘flibberty..flibberty..2..5..6. flibberty ..8..10..flibberty’ sequence that sounds like wartime submarine coordinates.
The hours drag by, as they do in hospital time, where a day is a week.
The massed bands of flourescents in the ceiling blaze on, announcing the 6a.m. medication, and my eyes cringe with pain. It’s a deja-vu of the Measles I came down with as a teenager.
Every bed has its own anglepoise, which is a nice, calm, diffuse light. But as this is a factory, full flickering migraine tubes are essential. It’s like being a sunbed victim or hydroponic dope plant. The medicine trolleys in the ward make it feel like Heathrow flight-path in a thunderstorm.
I try to sleep through the glare and noise with the help of my eye-patches and earplugs. Just as I’m dropping off, I’m woken up to have my blood-pressure and temperature taken – or my bedclothes changed – or my bed chassis cleansed. Then for breakfast. By then it’s about 9, and I’ve never felt louiser in my life.
I manage to conk out for a while, then eventually try to convince the staff nurses that the lights are not good for me, or anyone else, and are simply not necessary as there are large windows along the walls plus the anglepoise over every bed. She looks afraid and haunted. Apparently my pain takes second place to procedure. It will be ‘too dark.‘
The bureaucracy is really getting to me. Nevertheless, the lights are dimmed during the day. A major triumph.
I see my consultant. I tell him how lousy I feel and why. After the usual tests, he tries to spin the old ‘Man-Flu’ crap on me, and wants to send me home where I will be ‘more comfortable’ – conveniently forgetting that only Morphine kills the night pains. I try to convince him I’m worried about my face.
In spite of having to use my hand to pronounce every ‘P’, ‘B’ ‘M’ and anything involving my lips, and my having reported the problem repeatedly for 2 days, he asks:
“What seems to be the trouble?” The lack of communication and responsiveness are getting to me.
I spell it out again for him. His oppo takes it down on his laptop, while the intern I reported it to on Saturday caddies a clipboard and a rubber mallet.
Something seems to click with the Virologist. He tests my reflexes and finds them wanting and begins to believe me. He can now pass me over to a Neurologist, who should have been involved from the beginning. He may turn up today, or may not.
The jerk intern complains about the natural light, and a few minutes later, the migraine tubes blaze on again. I think they’re trying to get rid of me.
‘Guillaine-Barre Syndrome‘ pronounces Mr Siddiqi, the stroppy Neurologist, who demands answers like a Paxman. He objects to my eyeshades. “Not done!“. But at least he gives this pox a name, and explains that it’s a form of allergic reaction to the antibodies I have created to fight the Flu Virus. Which, to me, is a low trick.
Now for the tests. Lung capacity every 4 hours, which means another ward-change. CT Scan tonight. Lumbar Puncture tomorrow. Fun all round.
The battle of the Flourescent Fish-Fryers is lost, but Jak brings in my polarised shades, so I’m making a statement and getting by. The Captain has gone from the bed opposite, back to his care-home, with his tattoos and submarine noises. Next to me, James has both an Auto-Immune Syndrome and Sickle-Cell Anaemia. It seems I can feel sympathy again.
Nice consultant says the treatment could be 5 days of intra-veinous immuno-globulin. I’m looking at another week in this hellhole. How can I get a decent shite? Why do men put up with wearing nighties back to front when there are stylish green cotton Asbos available?
All I know about GBS is that it feels like it is determined to kill me any way it can, using any weapons available. What did I ever do to It?
In the meantime the struggle stays interesting. I’m to be woken every 4 hours to prove I’m still alive, which means I won’t be ‘woken’ at all because I will never get to sleep. Apparently the nurses are so impressed by my first Lung Capacity test (“Better than me!”) that they are selling tickets. They’re not as surprised as I am after 30 years of smoking.
Monday Night. New 6-bed ward.
Whatever uninsurable fate I have to share with everyone, I won’t face it with anything like heroism. That’s a fact after last night. The only describable thing about pain is its animal humiliation. Having to beg for relief from nurses with limited authority. Suffering the degradation of being refused. wanting to smash their faces in. And all caused by a microscopic few threads of DNA with no more purpose or sanctity than a grain of sand.
I know why Heroin got its name, even though I only know its little sister Morphine. All the charlatans don’t work. They didn’t tonight other than for about half an hour. So after being told there was no relief for me for four hours at least, I tried to look for it myself. If necessary, by by escaping to Camberwell and procuring some street Junk somehow. But in reality, by trying to walk off the pain or find a doctor who could take a decision. As I’m putting on my shoes, I notice a plain black hardback on the top of my bedside cupboard. It’s an industrial strength A5 copy of the New Testament. I tear it to shreds and dump it in the waste and feel a little better. I walk past the nurse station. They call me back – I explain what I’m doing.
They direct me “That way”. I talk to the ward Sister (I assume). By this time I’m almost screaming. The Sister gets on the phone. I hang from the desk-rail trying to shake myself Human. Eventually I hear footsteps – someone in the distance is talking about a ‘Mr Roberts’, which infuriates me. Beyond belief, I scream my name.
A nice little head-scarfed lady says she will help me, and to go back to bed. She leads me and lays me down. The exercise has done me some good. Immobility exacerbates the pain at night. I decide to try and invent Yoga, but someone already has and it’s crap.
I remember music, my MP3 player, Bird, ‘Loverman‘. It does work. Music by Junkies does encode the junk for the listener. I start writing. The pain begins to shift and fade.
The nice little Muslim doctor returns. She’s only young, with slightly buck teeth. She explains there is a new regime they can try (Gabapentin) and would I like to start now, as it takes 18 hours to work – in combination with other painkillers.
All this time my lung capacity is holding up fine, as is my capacity to keep my wardmates awake. They are so understanding it makes me cry. Slowly, as I stop being a passive pain-object, and write and listen to music, the pain declines.
The new drugs have arrived. I’m clawing back some Humanity. Having the screens around seems to help too. I’m in a space I can begin to control rather than the random wasteland of beds, bodies, pipes, doors and darkened corridors leading nowhere.
All I can see is David, who has had a stroke and can hardly speak. Thank god I’m not him. Whatever I’m going through I’m sure it’s nothing compared to childbirth or the most notorious torture diseases, which is humiliating in itself.
My problem now is how to get my MP3 player charged ready for tomorrow night.
[Enough for now. – Dr Seddon. Gabapentin]
Dai the Devil. A perpetually naughty look. Like Keith Allen in green pyjamas. Compulsively licking his fingers then wiping the table then wiping armpit then licking fingers and wiping the table then smearing the result on his chest and body. All with an intense look of fascination, as if cleaning traces of something delicious from a plate, and washing with it.
Opposite to me is Jim, the jovial Captain of the ward, who dwells knowingly on the seriousness of my disease and at length on the length of the Lumbar Puncture needles. A real cheerleader, Davy’s minder, model railway enthusiast, and enormously obese.
Only the patients in the ward can properly observe Davy’s behaviour, which might be relevant to his condition, and then report them to staff on their rounds – which we do. That kind of round the clock monitoring would not happen in BUPA’s private wards.
Plastered with electrodes and strapped to a steel slab in a turret in a castle in a thunderstorm. A kite is flown into the tempest and: ‘It Lives!’
At least it wasn’t the Lumbar Puncture. I’m beginning to become a bit of a medical novelty, attracting lots of attention, and pummellings with rubber mallets.
Cheery Del and his mate arrive, the barbers from Millwall.
The dreaded Lumbar Puncture needs a new name. One less ominous. In reality it is a pusscat with no claws. In term of actual pain, a blood sample hurts as much. The suffering is largely psychological. The vision of where that needle is going. I listen to ‘Embraceable You’ throughout.
The final decision is Guillaine Barre Syndrome (Light), to be treated with daily infusions of immunoglobulins for 5 days.
I’m swarmed over by medics of various grades and rank, including a resentful Virologist who obviously had the hump that I’d been stolen from him by Neurology. The Speech Therapist looks in and makes some notes.
A big night tonight. Will the Gabapentin replace the Morphine successfully? If not there’s only the Tramadol to fall back on until 8 o’clock medication, which after last night is a terrifying prospect.
No sleep today, I’m far too busy being ill and treated ad tested and marched up and down – on top of the usual routines. So I should sleep tonight, in theory. But in fact, it’s as likely as sleeping through an air-raid.
David is chattering. Once started, his brain is impossible to stop. A spontaneous stream of ideas and words, mostly mumbled, but rhythmically sound and sincere with broad gestures and expressions.
He’s asked: “David, where are you from?”
“And then it takes along the every and all the way up and across they go.
The way it works all the time when I’m in Catford but sometimes the end
with takes and runs round until you get first…”
He turns and laughs. A lovely, confused man.
It’s the same story with Lawrence, who fell off a wall in Brighton and damaged his head and is fasting prior to a major operation on Thursday. He’s very mobile and will do anything to help around the ward.
You feel that because of your brief acquaintance during a stressful time that it is a duty of some kind to make a difference. Because of the brevity – not ‘in spite of’.
Jim, for instance is probably a terrible old Tory. An ex-Yorkshire, Telegraph-reading, gluttonous businessman with interests in Hong Kong and in poor health. But here it doesn’t matter. Not much.
14th January. 9.15pm.
Another bad night with not enough painkillers to keep me asleep beyond 2am. Called the station and was given more Tramadol. Then woke up at 5am and was given Gabapentin. Then was woken up at 6 by stupid blood-pressure, temperature and pulse tests, with everyone else.
I’d warned everyone, including four sets of consultants and doctors that lack of sleep could trigger my Grand Mal seizures, and it did. I came to about 8pm after disturbing the ward all day. My I.V. drip is installed but not connected until about 9.15pm. Finished about 11, then I sleep again.
Another lousy night. Pain-wracked and meandering. I manage to blag some ovamorphine from a nurse and get 3 hours sleep before the usual reveille. Was advised to ‘Have a nice cup of tea.’
It seems like months since last Friday. GBS means I am constantly surrounded by Neurology students of every shape and colour.
There is talk of me getting out next Monday or Tuesday.
Making steady progress. The pox is in retreat.
Things I forgot?
1) Whether I mentioned the jazz anaesthetic test.
One night last week when the pain was bad in the night, and because of bureaucratic bullshit (i.e. medical advice) I wasn’t allowed more morphine, so I tapped into some Charlie Parker on my mp3 player, and it helped a lot. If that isn’t the experience of the musician being encoded and transmitted in the music, what is it?
And the days before, which I was told about yesterday. Damned if I can remember anything except night after night of being curled up in pain on my bed, then trying to sleep on the sofa, on office chairs, even on the floor. Then the GP visiting, and the Pain Killer scripts that didn’t work. I don’t recall how I got from home to hospital. Then the first shot of morphine and waking up without a face.
This is the tail-off, and not fascinating. Three hours of immunoglobulin / day until it’s better – which is happening. I can talk again~:
“Baby Hippopotamus. Baby Hippopotamus. Baby Hippopotamus.”
Of course, what I need is a camera and the freedom to use it. But more, I need to count my blessings when I compare myself to the other derelicts in this ward and the rest. The parade of gaunt, grey, yellow, skeletal, obese fellow-creatures lying about in different states of distress and confusion make me feel like the Queen of the May, even when I’m not at my best. At least I am able to complain.
Night shoulder pains too powerful for the combination of Tomazepam, Tramadol and Oramorphine.
Monday 19th January.
Nurses from Sierra Leone, Nigeria, Trinidad, Florida.. everywhere.
Whatever its shortcomings, the NHS provides a level of care which would seem like luxury to previous generations. However much it costs or will cost, or however slippery the slope to socialism it represents, it is, in Human terms, undeniable. And Bevan’s achievement in setting it up in 18 months, in the teeth of massed opposition from the media, the medical profession and the “vermin” tories, is on a par with landing a man on the moon. And more useful.
Apart from the occasional bit of painful bureaucracy, the general feeling now is of being pampered incessantly. Even if that means being woken at all hours in the process. The best approach is to just surrender, which controls the time, or at least seems to alongside the drugs.
There is a popular belief that more NHS money is spent on Heroin to relieve the pain of the last few months of life than on everything else. I’m not sure I believe it, but after my experience of Morphine, it definitely works when its imitations fail.
Being in a teaching hospital helps. It makes you feel as if you are paying something back. Of being involved more as a specimen than a customer. And the students are so cute and innocent, and have so much time, that the old impersonal tradition has been blown away with James Robertson Justice & Hattie Jacques.
After Jim left yesterday, I’m stuck with three patients who can hardly talk.
Phillip, the new boy with Parkinson’s, has had brain surgery to insert stimulators. His head is a mass of bandages. His gait a six-inch shuffle.
Tuesday Jan 20th. Obama Inauguration. (Day 12 – Last day)
On a Neurological ward, the range of suffering seems more apparent than on a ward of patients whose problems can be whipped out with a quick operation.
The variety of lingering, intricate bedevillments, with people lumped around drearily in corners or on beds or apathetically in front of the Antiques Roadshow, unable to communicate, or walk properly, or feed themselves, is very Neurological.
My condition was a reaction to my own defence-mechanism, and ate the insulation of my nerve fibres. So my symptoms were partly a mass of short-circuits. The effect at its worst was to dump me in a pit of pain which only Morphine and Music could ease.
Watching the Obama inauguration in the ‘David Marsden Dayroom‘ at King’s.
There are millions on The Mall. The dayroom is full of Neurology patients, with bandaged heads, walking sticks and green pyjamas.
For the past week I’d seen how much the NHS is not a Private service. How it often relies on partnership between patients and staff almost as much as the public service ethos of the staff itself. Both reinforce the commonality of human decency, and demolish the slanders against multiculturalism, which the NHS staff embodies at every level.
And here on TV was a Kenyan-Hawaiian with a Muslim name telling his country that “America is bigger than the sum of individual ambitions”. That American businessmen, politicians and the People should work together in precisely the way the NHS works – for the benefit of all.
Hopefully, if he means what he says, when he visits in April he will make a point of visiting one of our larger teaching hospitals to see how people are still able to put aside personal ambition for the general good.
Guillaine-Barre Syndrome does not give up easily.
I was warned that I would need lengthy physiotherapy to recover my balance and general strength, which made sense. I could touch my nose with my eyes closed, and walk a straight line, but I thought my days of running for a bus were over. I had to will my legs to take me in the right direction. Every step was an effort.
I was not warned that I my stomach would bloat with every mouthful of food, and need enormous forced belches to return to normal. Or that I would become averse to coffee, which made the problem ten times more painful.
I was especially not warned that the skin all over my body would itch horribly and fall off in flakes, or that my head would swell up like a pumpkin, and that I would need an emergency Steroid treatment to stop me being killed by anaphylactic shock.
I was given pages of exercises to do at home, and regular appointments to ensure I was do my homework, but I was never advised to audition for the part of the Porter in a local production of Macbeth in 2013, after which I was fine. I’m still trying to understand why.
11 years later, I’m still fine, with no lasting side-effects, in spite of not doing my exercises.
Most GBS victims don’t get off half so easy.
The jury still seems out on any link between Covid and GBS.
Guillain-Barré syndrome and COVID-19: an observational multicentre study from two Italian hotspot regions
Conclusions This study shows an increased incidence of GBS during the COVID-19 outbreak in northern Italy, supporting a pathogenic link. COVID-19-associated GBS is predominantly demyelinating and seems to be more severe than non-COVID-19 GBS, although it is likely that in some patients the systemic impairment due to COVID-19 might have contributed to the severity of the whole clinical picture.
No association between COVID-19 and Guillain-Barré syndrome.
Tuesday, December 15, 2020.
Neuroscientists at UCL and UCLH have found no significant association between Covid-19 and the potentially paralysing and sometimes fatal neurological condition Guillain-Barré syndrome.
But if anyone needed another reason not to become infected with Covid, GBS is it.