[This article appeared on my Substack. There will be more to this story later...]
Last November I went to the doctor's for my second shingles vaccintaion. It comes in two halves. I was glad to get this as shingles is a horrible illness. I'm very pro-vaccine. Why would you not want to be vaccinated against disease? However, I don't always have the flu vaccine as I've had bad reactions to it and I rarely get flu except, it seems, in the years when I have the shot. My not getting flu is probably a result of not liking people very much and wishing they all stayed six feet away from me.
So… had the shingles vaccine, correctly in the deltoid muscle. That’s the small muscle surrounding the top of your shoulder. If you cup your hand around your shoulder, that’s it. It’s not hard to find. I chose my left arm since the first shingles shot had left me with an aching arm for a couple of weeks. The nurse asked about the flu shot and I said I might have it at the chemist’s a few weeks later. One of the places I don’t like being in winter is any doctor’s waiting room. She looked at me like something she’d stepped in and said, “You mean you haven’t had it yet?” in a very judgemental tone. Normal me would have told her off for speaking to me like that and I hate myself for being intimidated but I said OK but not in right arm in case shingles one gives me problems with my left.
She said she could do it lower down in the left arm. You assume medical professionals know what they’re talking about, right? How was I, a lowly retired accountant, expected to be au fait with precisely how my arm is constructed? Not my business. She put the needle in several inches down my arm and I gave a very audible-but-being-brave shriek at the pain. She looked horror-stricken and said, “Oh, it’s a big needle”. I think she knew it had hit the nerve and the correct protocol, as I found out later, was to remove the needle immediately NOT continue to inject the vaccine.
The Aftermath
I was in pain over the next few days but assumed it was a bad reaction to the shingles vaccine again. I went to my physio therapist – a trusted professional I’ve known for years – and he spotted straight away that the radial nerve had been hit. I’ll leave you to google that rather than steal someone’s diagram. It runs from the fingers up to your neck and wraps its way around the arm as it does so. Yep. That would do it!
The Complaint
I thought the best way to get the GP’s attention – very difficult to get an appointment in the UK – was to start a formal complaint so I did that with a long email. Complaint liaison person responded with “we always inject into the deltoid”. Their first response suggesting that I was lying did not start us off on the right foot and I said as much. “Oh no, I didn’t mean it like that.” Right.
I sent photos and – wonder of wonders – got a long after-hours appointment with my GP. I had never seen him before. I hadn’t even been in their building apart from an asthma check and the previous vaccination. I did know of him, though, as a neighbour had worked with him, so I was armed with some background info.
He was charming. He was sympathetic and kind. He sorted out some meds for another problem so that was a score. But it was clear that their “thorough investigation” comprised the staff sitting round a table deciding It Did Not Happen. I called him out on it. He backtracked a little and said the needle MIGHT have hit a small BRANCH of the nerve. Nerves being what they are that would cause just as much pain and in any case the needle had no business being in any part of the nerve.
I explained I felt a little bullied about having the flu shot when I wasn’t really interested in having it and that is not exactly informed consent. Every GP practice has a target for these things. One of the many drawbacks of the UK NHS is that it sometimes treats ‘the population’ rather than the patient.
I had made sure the language in my email made it clear that I had a legal background. Do not get me onto the subject of informed consent on a long plane journey. You will wish you had a parachute. I had a big falling out with carers at my mother-in-law’s care home when they bullied her into something then declared that she said ‘yes’. Grrr…
The Pain
Let me explain the pain. It’s mostly a permanent dull ache. This is a problem in my hand and in my shoulder at night. I can’t lie down without pain. I can’t sleep on one side, only on my back. That in itself would cause you to have poor sleep, even without the pain. As it is I have to wake up and walk around every couple of hours and some nights I only get four hours’ sleep.
Every now and then I’ll make a random movement or lightly knock into something and the sharp pain is indescribably bad. I will scream in pain. Awkward in public… Recently I took my coat off in our lift and caught my foot on it as the lift opened, pulling my arm. I then screamed and fell into the lift alarm which blared loudly. All the neighbours in our block know about my arm!
The pain can be unbearable but the real problem is the lack of movement. I can’t drive (can’t use my left arm on the gear stick), can’t swim, can’t play the piano, can’t sew, knit or crochet. Basically, all the things I do I can’t now do. I sometimes have trouble cutting my food or even holding a fork which makes having meals with friends awkward.
I can’t raise my arm above my shoulder so can’t wash my hair or even put it in a ponytail without excruciating pain. I can’t dress or undress myself. I can’t work light switches or the washing machine or dishwasher without having to think carefully about how I’m standing and which arm to use. There are small, normal movements that are impossible for me. I can’t put my hand in my pocket. I can’t tie an apron. Both jeans and pull-up trousers are complicated, to say the least.
I was just getting to love my life. I’d been through losing my Mum and serious illness. (Long Covid affecting the GI tract. You don’t want to know. I’ll just say at least the alleged constipation effect of Codeine is not a problem for me). We’d moved house. I’d been through a horrendous two years being manipulated by a malignant narcissist I thought was my best friend. My book ‘My Friend, The Narcissist’ is out soon. I keep saying that but it really is out soon. Fortunately typing is something my arm allows me to do, in fact it seems to help having my arm in the air and not constricted.
Our amazing life in retirement was just getting started. Now I’m disabled and can’t do any of it.
The killer blow is not being able to swim. I don’t run, play tennis (or anything involving a ball) or cycle. My exercise is swimming. We have a fabulous communal pool, which I often get to myself, and it made a huge different to my wellbeing last summer. I even swam a sponsored 21 miles for charity. “You’ll have to swim in circles” from the neighbours is going to get very annoying!
What Next?
The next step is to see a neurology consultant and probably get an MRI, if nothing else to establish exactly what the injury is. He might not be able to do anything but I’m worried that in two years’ time a doctor might say to me “If only we’d done ….It’s too late now” I’m not sure how I’m going to feel if the suggested treatment is a steroid injection in the same spot!
The other disadvantage of our NHS is that this could take months or even years so I have to pay for that through the private hospital. We’re already out financially. We’re having a bath replaced with a shower ten years before we planned to because I can’t safely get over the bath. We will need an automatic car if I can’t work the gear shift.
I’m all in favour of universal healthcare, in fact I’m disgusted at those countries that don’t have it, but I have to say that the few major health problems I’ve had in my life have all been down to negligence by NHS staff and there is very little accountability in the system.
No More Vaccines. Ever.
… unless they find some other way to administer them. I think I’m actually becoming needle-phobic. Or maybe it’s a phobia of people not knowing WTF they’re doing. I’ll consult my Greek friend on how to construct that word.
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