Last week I left the flat for the first time in a year and a week

Tuesday 30 March, 2021

I honestly felt like I was never going to leave the flat ever again, and actually after last Thursday, it’s still a worry…

Nothing to do with Thursday, but last week was a bit of a bad week. Not sure what caused the flare up but my hips swelled up, then possibly the way I had to walk and sit to lessen the pain and discomfort from that caused pain in my back and neck, which forced me into lying down flat for a while until it all sorted itself out. Then I got a migraine. So Sunday and Monday were pretty bad. I was taking my full doses of cocodamol, which then kicked off my chronic acid reflux and even on esomeprazole and top up gaviscone, I was still choking on acid reflux asit continued to splash up my throat.

Such a glamorous life of a chronically sick and disabled person I lead.

But, Thursday was the day of 3 weeks since my jab. Which, it goes without saying, I did clearly survive. So, I’d already made a plan to go out and enjoy the nearby country side.

Thanks to waking up choking on acid reflux twice, I got less than 3 hours sleep. I actaully thought, you know what? I’m going to go the whole hog. First time outside of the house, properly, in a year and a day? I’m gonna dress nice! I’m gonna even put on make up! And if you know me, then you know that’s a very big deal because I only wear make up for weddings and really nice days out at the theatre with my friend, or I look very very sick and actually care enough to Not want people to think I’m diseased. And, given it was meant to be a sunny day, I thought “and the Sun Protection Factor on the foundation will come in handy.”

I woke up on Thursday feeling like crap and could not be arsed with the make up, so I didn’t. I did wear one of my nice Tshirts though, underneath my hoodie. And it was one of those awkward weather days where it was a bit too cold not to wear a coat, but absolutely boiling with a coat, so I thought, I haven’t actually felt a nice cool breeze on me in a very long time, so I’ll just wear a hoodie.

And then we went outside to the local nature park. We wore masks from before we even left the house, as per the SCIENCE. We passed 33 people during the whole hour we were out, only 2 of them were wearing masks, and they were carers inside of a car. It might be “safer” outside, but the air droplets of this virus do still linger in the air. Just because the government say you must wear a mask inside shops and enclosed spaces doesn’t mean you shouldn’t also be wearing masks when just outside.

Seconds after we got to the park, we got passed by 5 fellas on bicycles, none of whom we wearing masks.

I wanted to come home immediately. I just had to keep reminding myself that they were in each other’s company far longer than they were in mine, so more likely to get each other sick than me. Which is terrible, but no less true. But also, on the other side of the same coin, they must trust each other implicitly to take that risk with each other’s health, so if they could trust each other not to infect each other with the virus, then I could, potentially, also trust them not to infect me.

It just keeps coming back to not knowing whether I can trust everyone else is taking the pandemic seriously, taking the risk to their own health seriously, the risk to other people’s seriously, and that they understand what asymptomatic transmission means. Given what I’ve seen on the news and on social media, and even some friends, it’s a resounding no.

But I persevered. I was somewhat amazed and also somewhat dissappointed by the park looking the same as it usually does. The grass was still all there, there were no dystopian towers suddenly built in any of the fields, the pavements were all the sme, but I got wonderful fresh air (through a mask), and I was surrounded by greenery and some flowers. You can’t ask for more from a walk in the park!

Oh, we saw police horses! That was nice.

We also saw a whole group of people taking up over half the path and they could have gone single file like we were doing, but they didn’t. Which is just rude in normal circumstances, but violates the neccessary social distancing required during a pandemic. I mean, come ON people!

End of the line for the park, we turned around and came back. Which was good timing really because it was starting to go from “refreshingly cool breeze” to actually shivveringly cold.

Despite the bad morning and not feeling very well when we left the flat, I did actually feel better in a different way when we got back. My hips and knees didn’t feel like they were sitting in their sockets the right way, but I felt like I’d earned the tiredness I felt. The thing about chronic fatigue syndrome is that you can feel drained and tired but not feel sleepy, and you can go from being lively awake to feeling sickeningly overwhelmed very quickly. And, it’s always a risk when doing something new, or for the first time in a while, to feel sickeningly overwhelmed, almost as if you’re about to suffer a massive migraine that doesn’t quite come. It just happened that this time, I felt refreshinly tired which led to sleepy. So, after dinner, I fortified myself with some gaviscone and went for a kip.

I woke up a few hours later with my forehead all red. What could have possibly caused that!?

Oh yeah. The sun. Because when I sacked off putting make up on, I then didn’t bother with sun cream in it’s stead. I’ve been putting After Sun on my face twice a day ever since, hoping the red and dry skin will clear up to a slightly brown tan at some point. It usually happens. It’s not happening this time, though.

Maybe my skin’s forgotten what it needs to do after all this time of being indoors.

I don’t plan on going out again until after the second dose, now. The good thing about going out on Thursday, waiting 3 weeks until the first dose had reached it’s peak, was that it was likely to be other people braving the outdoors and elderly people already vaccinated (because, I don’t know if you remember, but shielders were actually advised to not even risk going out for exercise like other poeple were allowed to do). Now Johnson’s opening the country back up, I can anticipate the pavement situation being worse.

I sometimes have a good view of buses going by the window. I saw one a couple of hours ago with a lot of people on, despite bus companies saying they’ve lowered capacity, and the government saying still to only use public transport if your journey is necessary. (Which conflicts their over all message of return to your offices, filthy scroungers who don’t want to pay for commuter coffee or lunch break sandwiches from the expensive coffee shop near your work! I can understand why peopel are confused…)

Ultimately, I just don’t think it’ll be as safe it was, for me, to go out again until I am fully vaccinated. So that’ll be in two months.

I wonder what the outside will look like then! Dystopian tower, barren land, or depressingly the same as it did last Thursday?

One Year And A Day

Saturday 20 March, 2021

It’s been a year and a day since I went in to self isolation. That was the phrase being thrown around before the sheilding list went live, I don’t know if many people remember that. And many of us were then left off the sheidling list.

I’ve seen a total of 6 people in the last 12 months, most of them were just socially distanced door meetings. One person was a repair man who came in at some point between the two lockdowns.

I miss Libraries

I miss my friends

God I need a hug

I haven’t been able to visit my mum’s resting place.

And in fact, the reason it’s been a year and a day is because yesterday was the anniversary of scattering my Mum’s ashes. I’ve been a mess most of this week, and only, oddly enough, started to feel better about things, generally, yesterday. I think it was the 12th, last year, when things started to look bad when the government was telling people to only leave home for work and emergencies. So it was from then that I made the decision that, after scattering my Mum’s ashes, I wouldn’t be leaving the house until it was all over.

And since then I’ve left the flat 3 times.

Mum’s birthday, to visit her resting place

December, to get the flu jab.

And two weeks ago to get the covid jab.

People are talking about winding down lockdown, there are anti lockdown protests going on today – as well as the anti-protest laws marches – and people raring to go back to normal. There are still thousands of new infections a day, even though the death rate is slowly coming down, and the NHS is still overwhelmed.

Between the lack of 0 covid strategy and the general public really not caring about the health and well being of other people, I don’t feel like we’ll ever get back to normal. There’s certainly a lot of people I no longer have respect for, consdering they think their right to go to the pub trumps my right not to be killed by a deadly highly infectuous disease.

Protected: This is a bizarre one – PadGate

Sunday 14 March, 2021

This content is password protected. To view it please enter your password below:

My experience getting the vaccine: 1 day, 13 hours, 32 minutes and 0 seconds post jab

Saturday 6 March, 2021

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.