Getting the vaccine itself was nothing short of a battle when it really didn’t need to be. I have a rare genetic disorder, asthma, a heart condition, ME, and a history of being very unwell with normal colds and flus, but none of this mattered to my GP. None of this has mattered to my GP throughout this whole pandemic. Starting with the shielding list, which I couldn’t get on because I didn’t have a “serious pre-existing respiratory condition”, calling my rare genetic disorder “idiopathic scoliosis” and ignoring all of my history and notes, to three weeks ago where I was told I am not elligible for group 6.
Group 6 includes people with pre-existing conditions, people with neurological conditions, ME and would otherwise be unable to tolerate hospital treatment should they get sick enough to need hospital treatment. Considering my history of hospital treatment:- you know, like the time I almost died of blood loss because they miscalculated how much blood I, a very small person, was able to lose during an operation because they were going with a standard average measurement; or having to put up with a hodge podge neck collar cut down as best as possible, because I don’t have much of a neck; or the time a nurse told me I was panicking because I had an endoscope in my throat and that’s why it wouldn’t go down and not because they were using a scope too big. I had to wait three months to try again, where I refused the suggested sedative because the nurse blew my vein using an IV needle too big – you could not make this up – and they used a paediatric scope with no problem instead…
I mean for god sakes, it’s never any secret that I, a very small person, am about to be a patient everytime I am about to be, but everytime I am in hospital they are shocked, Shocked!! When I can’t use their “average sized” equipment. I’m 4’3, their small gowns are too big, their orthopaedic equipment is too big, and I’ve had nurses blame me for not trying hard enough to get on with it anyway. Yes, I don’t think it’s unreasonable for me to worry that should I get the virus and need hospital treatment, I will have the wrong sized equipment used on me and suffer as a result, or just have a team of so called medics standing around shrugging at me because i’m intolerant to the wrong sized equipment. (similar to when I told a doctor, no I could not hop up on to the examination bed that was on wooden legs about 4 foot tall, even on a good day and I was at the hospital because I was not having a good day – I often wonder if him and the nurse thought if they stared at me long enough, I’d just magically levitate on to the table.)
So, the last three weeks have basically included me going three rounds of phone tennis with my GP and the receptionist who would “have a word with the GP” and never get back to me. I did, at one point, get a text to book my vaccine but when I opened the link, both centres were fully booked and it told me to try again later. When I tried again later, the link opened to a page saying the invitation had been cancelled. Which, eventually, fuelled me into a rage where I gave a Judge-worthy breakdown of my condiitons and how they effect me, how ME/CFS alone is included under neurological condiiton of Group 6 and that if I was inelligible, why did I get that text in the first place? I demanded to speak to a doctor, the receptionist tried to say a doctor could call me back after the weekend, I put my foot down with a firm voice and said no, a doctor needs to call me back today.
A doctor called me back two hours later.
I gave the doctor my Judge-worthy breakdown of all my conditions and how they effect me, and asked how did that not make me elligible? He said it sounded like it did, on the asthma alone. I then asked about how, if I was inelligible, how did I get that text message in the first place? He said he’d need to talk to his colleague but he was confident I was elligible, and that someone would definitely call me back too book my vaccine. I pushed it a bit and asked if that would be written on my notes, the doctor just said he needed to talk to his colleage. Ten minutes later the receptionist rung me bck to book my vaccine, and after that also booked my Dad’s appointment as he is now in the role of my primary carer.
And yesterday morning, after my taxi driver turned up late!! I got to the centre in time to have my jab. The fellow who gave me mine was a former anaesthetist. A funny sense of humour, but not exactly compatible with mine. I needed some comfort, after telling him I was no good with needles. He told me I didn’t need to be good with needles, he was the one giving them!
When he was giving my Dad his vaccine, he suddenly went “whoops”. I didn’t know why he’d said whoops, so I looked around and went “whoops? I don’t like the sound of whoops!”. I thought he’d explain, but he didn’t, he said “Not to worry! All done!”. Turned out he thought he’d missed the sharps bin but hadn’t, so it was fine.
But back to actually getting the vaccine. I am no good with needles. I once had a nurse give me some booster when I was 15 and she used the type of needle they use for babies so i’d feel it less and I even felt that. The worst injection I’ve had, by far, was the BCG – I think we can all agree on that one. I literally hardly felt this one. I did feel it, much to the disbelief of the doctor, but it didn’t really hurt. I can’t explain to people enough that needles could literally be painless and I’d still be afraid of them, it’s not about the pain though that makes it worse, it’s about breaking my skin barrier. My skin is my number one line of defence, I hate the idea it’s so easily penetrable! I may have some ~issues~ after a childhood of being made to have needles. Even when I was told it was my decision, it wasn’t really because there was only ever one right answer.
Anyway, so the doctor mentioned side effects. He said unfortunately, it was people my age who get the worst of it and the older people get through it better. I could have some cold or flu like symptoms, or could be absolutely miserable for the next 2 to 3 days. He said just keep thinking, by Saturday, it should be over. If I felt unwell, go to bed and take paracetamol, if I felt really unwell, go to bed, take paracemtamol and don’t even try to do anything until I felt better.
Well. We got home and I didn’t feel too bad. I mean, I was panicking a bit over every ache and pain I had thinking it was a side effect but I literally have chronic pain, so, that was just a case of me being silly and disabled. And then 7 o’clock hit. I got a migraine. I went to bed for a couple of hours. I couldn’t sleep, but the dark room helped. And then I started feeling *rough*.
And it was all downhill from there. My throat got really sore, I got a high temprature, allodynia, and body aches. I don’t know if this was a side effect but I kept needing to pee every hour, though I’m sure I hadn’t drunk that much to generate that much urine. And then I started uncontrollably crying. Is that a side effect or was it a sudden onset of a depressive episode? That was my whole night in a nutshell. I barely slept. I spent the night being too hot, too cold, couldn’t tolerate the duvet, was too cold without, in agony, getting up to pee and doing an old lady shuffle (think Julie Walters in the two soups skit) back and forth to the bathroom, my arm could barely weight bear me on my crutchers, and then just randomly start sobbing, lather rinse repeat. And then I managed to fall asleep, got about 2 hours, woke up desperate to pee and then got nausaes and dizzy.
My Dad told me I was best just going back to bed. The logistics of that endeavour was more complicated than he could fathom. Crutchers, needing to vomit, barely being able to walk, not enough support from my arms… These are problems I wouldn’t have if I actually lived in a full on wheelchair accessible flat. Or had a toilet in my room.
I started *vibrating*, it felt like I was having a panic attack. The only thing I could do was lie down flat on my back, arms away from my body lest I overboil from skin contact off my own body and wait for it to be over. All day I’ve been thinking “Better by Saturday. Better by Saturday. Better by Saturday. Sunday at the latest, but Better by Saturday.”
I threw up at 11 o’clock, but slowly made my way through a bowl of soup for dinner at 1pm, went back to bed, chocked on acid reflux, took some gaviscone and went to sleep for abour 3 hours. I honestly woke up feeling the best I’d felt in 24 hours.
It has slowly improved from there. I still have body aches, I’m still doing the old lady shuffle to the bathroom, but I had rice and steamed vegetables for tea. I also managed a biscuit so I could take more paracetamol. I’ve also haven’t randoly sobbed since half 2 this afternoon.
I’ll be going back to bed once I publish this.
And just for comparison, I asked my Dad how he’s been. “Yeah, I had a bit a headache, bit of a rough night, you know, but not too bad.”
I’m not sure which part of his night was “rough” consideirng the snoring I heard every time I went the loo, but sure.
Better by Saturday? Let’s see what tomorrow brings.