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.


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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.


Making a list, Checking it twice…

Tuesday 23 February, 2021

I have, after a difficult time, become completely PA-less. And it’s always been difficult to hire a new PA, I couldn’t even fill the empty hours my PA left when she downsized her hours and actually arranged interviews for that role about 2 weeks before the pandemic kicked off. I mean, I was there where I do the interviews on the Monday, and a week later the whole building was closed, and a week and a few days later, the whole country was in lockdown. That was nearly a year ago.

So now here I am, there’s still a deadly virus out there, my only way to keep myself safe has been to cut down my calls to the basics, and I’m torn between going back to another agency – and that’s not a good experience outside of a pandemic, but I had to cancel the agency who was fulfilling some calls after we lost Mum, because I had carers pulling down their masks to speak to me, refusing to wash their hands because they’d just put new gloves on, which they’d put on outside my flat, and put them on without washing their hands, and telling me alllll about the fun they were having at their friends and family’s households without any care on how that’s exactly how you spread the virus.

I look outside the world through the window and I’m not confident that it’s got much better the longer this pandemic has gone on.

But being a Direct Payments Employer is not easy. As we already know, it can take months to actually hire someone, and there’s no HR department to turn to when problems crop up. So it’s with these things in mind I created a pro and con list.

Pro of Agency Con of Agency
A pro of having an agency is that usually you see calls being fulfilled within 2 weeks.
That means you’re not waiting a year to have a shower.
A con of having an agency is that you get your call fulfilled when the carer gets to you, not necessarily at the time you need or want.
A pro of having an agency is that you have someone to complain to if something goes wrong.A con of having an agency is that management can fob you off and problems don’t actually get dealt with.
A pro of having an agency is if you don’t like someone they send, you, supposedly, can ask that they never return.A con of having an agency is the ineptness of a lot of the staff who don’t care about their job or the people in their care, and basic common sense stuff seems beyond them. (Do not turn off the shower whilst I’m mid-shower)
Another con is the high turnover of staff, meaning no consistency, awkward first meetings every couple of weeks, and going through the basics of what you need from them.
– What’s the 100th time for you is the 1st time for them-
Another con is when agencies become short staffed, that play disability Olympics and guilty you into accepting no calls.
I’m always the one with the unimportant calls.
If you’re sick and cancel a call, there’s a high chance the carer won’t get the message in time and turn up anyway.
Pro of Personal AssistantCon of Personal Assistant
The pro of having your own PA is you know who is coming to every call.The con of having your own PA is the hiring process can be extremely difficult and take months. Who wants to go months without a shower and their bedding changed?
The pro of having your own PA is you decide your own hours with your budget. If they can’t fulfill your hours and they’re reasonable hours, you don’t hire them.The con of having your own PA is when problems start to creep in after you hire them, you’re on your own.
The pro of having your own PA is you can set out from the beginning what is expected of them.The con of having your own PA is trying to figure out what they say to get the job Vs what they are capable of doing after being hired.
The pro of having your own PA is direct communication. If you’re sick and need to cancel the call, you just text your PA and let them know not to come that day.The con of having your own PA is when they fight against the hierarchy of power and start expecting to be informed on smaller details which shouldn’t affect the time of the call.
– The call is an hour long but they say things like “you should have told me you wanted your hair washing today” even though it’s an hour either way, or they turn up very early and you’re not in because you’re out at the cinema, and “You should have told me you would be at the cinema”. No, the PA should arrive at the time expected.
The pro of having your own PA is you interview your own people and have your own standards that they have to meet.A con is the legal liability of having people working in your home. If anything goes, the blame wrong lays with you. You have to be your own HR department, OT department and Admin Team, and communicate with an insurance company.
Another con is nobody respects direct payments PAs, many places expect proof of ID if you need a carer with you, but there is no ID a Direct Payments employer can provide.
The con of having your own PA is that it’s on you to ensure ppe and training is provided (if needed) and kept up to date.

I mean looking at that, neither option really shines through.

Are there any factors I’m missing, here?


How do you solve a problem like the smart phone industry?

Thursday 18 February, 2021

My phone is dying. Again.

I’ve got an iPhone 7 and I bought it second hand in 2019, very good quality guaranteed, with a 6 month warranty on it. Almost 6 months later, around about this time last year, just after losing mum, just as the epidemic was becoming a pandemic but before lockdown, the screen went blank and would not come back on.

After a bit of a faff, I sent it off for repair under warranty and a week later got it back repaired. Then seven months later, November last year, the battery died and I had to send it off to repair again, and pay for the privilege. To be fair, my phone was back with me within the 7 day time frame.

But here we are again, just months after the last repair, facing battery health failure, with apps randomly closing on me and, weirdly, sometimes missing calls because it lowers it’s own volume to really, really low. Dr Internet tells me this is a memory problem, conspiracy tech wizards tell me it’s Apple deliberately making the phone act dysfunctional and also Apple updating the apps to run beyond the capacity of the battery. And a quick browser search about Batteries shows that once a battery starts dropping quality, you get n into a vicious cycle. You need to charge your phone more, but charging it more frequently means it’s power cycling more frequently, and doing more damage to the capacity of the battery. Neat!

I’ve tried the usual fixes, or if not fixes then tricks to stave off battery death as long as possible, and this is still the outcome.

So clearly my options are either send it for another repair or buy a whole new phone. And I’ve got to say, I’m leaning towards the latter. But… It’s not that easy.

I’ve got small hands, I can’t just buy any new good model on the market within my price range, I need to be able to hold it comfortably! I had the galaxy S4 mini and that was just a bit too wide in my hand for me to hold, and when I got the slimmer Iphone 5s it was perfect and I felt like I should have just got that in the first place, but unfortunately when the big update was coming through that finish off a bunch of apps, i didn’t want to risk having a smart phone that wasn’t so smart, so I upgraded to the 7. It is just on the brink of comfort. Noticeably bigger than the 5s but not as big and awkward to hold as the galaxy S4 mini.

I don’t think I want to continue on with the iPhone family. I know there’s the iPhone 12 mini and that the size is perfect, but I’m not too fond of the company. I mean I never was, I bought the phone out of necessity, and same with the 7; But just how long will I be able to use the next phone before Apple decide it’s too old to support, too old for their brand and do something to make it unusable?

One of my friends has a Pixel. It sounds like a nice, reliable phone, but all Pixels are too wide for me to hold.

I am not too sure about them, but I did consider maybe a second hand Huawei. Because despite what my parents thought, the tech being second hand isn’t automatically the problem here. But even if I could see past it’s questionable reputation, and dodgy description of awe-inspiring zooms when you take into account actual zoom Vs digital zoom (aka cropping), I’m still stuck on the size aspect. I looked at videos which compared the p8 lite, p9, p10, p20, p30 and one of the Ys, all to the iPhone 7, and they were all just too wide.

I wouldn’t consider a Windows Phone unless I was being paid considerably, and that would have to be on a wage, not just a one off lump sum.

And I don’t think it really leaves any other smart phones, does it?

So I considered a Nokia. Did you know that a couple of years ago, Nokia released an updated version of their old inside classic 3310? I never had one but not for lack of interest. Well these new sleek, updated versions are lovely little things and come in a few different colours for a reasonable price of £49.99. And in all honestly, I recently bought a tablet (which makes the phone situation even worse because my phone use has gone down with using the tablet, and it’s sitting there needing to be charged twice a day!) so that means most of the smart phone stuff has been done on that instead. So really, how much do I need a smart phone anyway?

I’ll probably be given this answer when the pandemic is over, when I’ll leave the house and remember exactly what I used my smart phone for, because for the last year, it hasn’t been used for more than music and Instagram “forever scrolling”.

Camera? I have a camera, it’s been a bit neglected over the last couple of years, but I do have one. Music? Well… Yeah actually, I have my mum’s iPod and I wouldn’t mind going back to that, I suppose, as long as Apple don’t kill it off through having to hook it up to iTunes to put music on it. But also…

I remember my Walkman Phone very fondly… I havent needed an additional source of music alongsides my phone since I bought that little thing, apart from the few months between phones, when I went back to a little basic 9pad phone that didn’t take music, (Or have internet, or even have a camera) and had a few hospital appointments, so I borrowed my mum’s iPod until I got the iPhone 5s. And by coincidence, someone had reviewed the updated 3310, and after watching the review for that, the next one was their review of the 5310 aka the Nokia phone that had dedicated media player buttons.

And I have to say, the temptation to replace my smart phone with some retro inspired non-smart tech is very very high. I mean I’m 90% here, that when I can’t keep going on with the iPhone 7, I will buy this Nokia 5310. The only thing stopping me is the bloody 9pad.

I can’t stand 9pad and I changed over to a BlackBerry as soon as I could afford to, so that I didn’t have to deal with one ever again. And I loved the BlackBerry phones I had! The first one, 8900, was a full expensive one, the second one, an 8310, was a refurbished one. It was amazing! There might have have been a character limit in the texts but if there was, I never reached it! My only limit was my Tarrif. I think it came with 300 texts, and 5 texts would pay for a photo message. They were a bit chunky in the hand but I think it was the shape and maybe the weight of it that made it easy to hold.

The few times I’ve had to go back to my little basic phone with the 9pad, I’ve quickly remembered how that’s the one drawback of a basic phone, and returned to the smart phone ASAP so that I didn’t have to deal with it anymore.

I looked into what we’ve got in the market these days for full Qwerty keyboard phones, which aren’t part of touchscreen, and unfortubately there’s not much. There’s the latest blackberry’s, and that’s it. Back in the 00s, integrated qwerty keyboards you could slide out or pull out were all the rage, but the touchscreen market was too big a competition for them, and they became outdated and unwanted.

Except I’m writing this in 2021 wishing for them to make a comeback, because they are not unwanted. I want one! It would be perfect. The slim build of a 00s clamshell phone with a full on qwerty keyboard that slides out!

I think my only hope is waiting to see if Nokia bring out an updated version of one of their’s, in their quest to bring us back the old favourites, but whether my iPhone can last that long is anyone’s guess.


RIP Mum

Saturday 30 January, 2021

One year ago today.


Thwarted by Technology… sort of

Sunday 24 January, 2021

It’s not that it doesn’t exist, it’s not that it’s not possible, it’s that someone in some management office somewhere has decided it’s not worth the time and effort it would take to implement the universal access of it.

What am I talking about? I’m talking about things not being available for devices which otherwise work and brand new apps which could, in theory, work on said devices if the companies can be bothered making a compatible app.

I got Britbox a few months ago. I got the free trial of it and I paid for it for two months after that, as I wanted to watch shows that were now unavalible elsewhere. I am still sort of mentally not with it for binge watching, so I knew it would be a bit more money than it was really worth just on that fact alone, but just having it there for when I wanted it was nice… at the start. And then I realised how much a pain in the arse it was.

I’m physically disabled and if there’s one thing I need, it’s comfort. Sitting in front of my computer for an hour and a half to watch something is okay on occasion, but I’m long passed it being my first port of call to watch something with my current set up (IE, lack of a desk). I also don’t mind binge watching trash telly on my phone, because it’s trash telly and not something I want to absorb properly, and it’s no big deal if i’m in too much pain to carry on holding my phone up to my face. I, as much as I can, watch films on the telly.

Britbox has a phone app, a tablet app, apparently a telly app for a smart telly (but loads of people say it doens’t work), it can sort of work with a Roku stick (if it’s blessed by the high priestess of Fairyland on the second equinox, but ONLY if it lands of a Tuesday). For all of my other streaming needs, I use my xbox 360.

Yes, you read that right. Xbox 360. I’ve had my baby for nearly 10 years! It’s become a family relic and I don’t plan on getting rid of him anytime soon, he still works. He can play DVDs and everything. Well, not everything because there’s no Britbox app for the 360. And in fact, there’s no BritBox app for any games console! Yes, I know, very priviledged problems to have. I can also complain about my real problems if you’d like…

And the thing is… Britbox is backed by some pretty big pockets. Maybe Netflix, Amazon and NowTV are backed by bigger pockets but it doesn’t make any sense to me that they don’t have an app for games consoles. Games Consoles must account for a lot of streaming of television. It must do! And to not get into that corner of the market, it makes no sense to me.

If you look at the twitter search results for people complaining about this, for people requesting there be an app for games consoles, they are met with the same reply. There’s no plans for the future but they’ll keep it in mind. Thanks for your feedback, folks!

And now. Now, I come to watch some films I do have on DVD but which are not currently accessible to me, and I find that due to the… I don’t even know what to call it. Because it’s the oppoisite of monopolisation. The split. The war of the streaming devices, the films i want to watch are not on the streaming services i already have. They are on Disney+. I do not have Disney+. The first reason for this is when Disney+ was first released, I wasn’t watching films, and that’s pretty much been it for the whole year until about December. The second reason for this is, really??? Paying for another service?? I have Netflix and CinemaParadiso and that pretty much had me covered, and then I got Prime cos there’s more interesting shows on there (Besides Kobra Kai). And now, if I want to access “Disney” films, which include many, many other movies because of how many other companies Disney has now swallowed up, I have to get Disney+. I mean the simple answer now would be to just get all of my DVDs out of the boxes I put them in for the move that never happened, except that would require physical labour I can’t do myself and nobody wants to help me with and it would take up space I never really had in the first place and still don’t have… And you think, when streaming became the main mode of in home entertainment, people got rid of their physical stuff. Their books went cos they could read on Kindle, their DVDs went because they had Netflix and Prime, their CDs have long been gone because of Spotify and Itunes Music… and they might as well have kept them all because now they don’t have that kind of access to the films they want to watch anymore. Is it really worth the cost?

Which is veering off track a bit there, but still a valid point, I think. In my humble opinion.

I thought, well, I’ll just sign up for the free trial of Disney+. It won’t take me longer than the duration of the free trial to watch these movies, mental health and CFS permitting. And if it did, well, paying for one month isn’t too bad, I suppose… Sort of like a Disability Tax, i’m used to it.

And then I went to get it on my Xbox 360 and, well, there is no Disney+ app for the xbox 360.

Why!? Again, this can’t be a money issue! They surely have the capabilities, the resources, to make an app for the xbox! And I refuse to believe that my phone is so advanced it is capable of doing things more than my xbox! I’ve played games on my phone, trust me I know where the quality lies. I downloaded that Harry Potter game on my phone for all of a day and uninstalled it because it was no better than playing the playstation game back in 2002! And it must go two ways, surely, that if my phone is capable of streaming Netflix and so is my Xbox, then surely my Xbox is capable of streaming Disney+ if my phone is capable of streaming Disney+!

So really this feels like nothing more than enforced obselences. It’s not so much these devcies don’t work anymore, but that less and less is compatible with it, meaning your ability to use it lessens, forcing you to upgrade.

My poor little xbox is being outmoded!


One frustrating thing about carers…

Saturday 5 December, 2020

At the end of last year and then the beginning of this year, I went back to the social services to get more hours/more elements for my care package because my mum’s health was clearly getting worse, then she was in hospital and it was clear her role as my carer was over, as, well, at the start of her hospital admission it looked like she would be coming home in need of a full care package herself.

It took over 3 weeks for their “emergency” assessment to take place, which was an absolute farce and I can’t even be bothered to get into it, but it ruined everything I already had in place with my PA, and then it took until after we lost my mum for the new “emergency care package” with a care agency to start.

Now as well as it being frustrating because it displaced everything I had set up with my PA, which meant I had to change the set up with my PA, these tea calls, a half an hour call, was meant to be the carer comes, makes my tea, washes the dishes… and somehow helps me get changed. At half 5 in the evening. (Also, my PA was meant to come all 7 days a week and leave lunch out for 3 hours because apparently social services don’t provide dinner calls anymore. Cold beans on toast, anyone?)

With only half an hour, I was stuck only to microwave meals that could be made within 10 minutes, and had to scarf it down quickly so they could do the washing up before they left. I didn’t have time to get changed even if I wanted to. That wasn’t their fault but you could see some of them were ready to go as soon as they put the food out.

“That all, then?” they’d ask, picking up their bag and about to step out the door.
“Er, no, you have to also wash the dishes when I’m done…”

But that wasn’t the most frustrating part. (Even my acid reflux/food reflux issue being the worst it has ever been wasn’t the most frustrating part)

The most frustrating part was how much they made me feel like my… everything, was wierd and bizarre and different. I know the door situation is odd, and maybe the layout where the bathroom is, is odd… I mean, no! You know what, I don’t understand what could possibly be so difficult to understand about the instructions “Yeah it’s through that door there in the middle of the wall, and it’s the first the door on the left.” It’s the first door down a little corridor, the door to it is less than a foot away from the hallway door. Yet the amount of times people have come in, and just… gone down the hallway to the bedrooms, ignoring the big door in the middle of the wall, and ignored me correcting them, whilst heading into my parent’s bedroom. And I point!

But also, they’d come in, search around for the light switch for the kitchen- it’s right there by the kitchen door, they’d press all sorts of buttons on the microwave, changing the power percentage, and then not knowing how to turn the nob to get the times. They get too flustered to actually listen to me and i have to tell them to turn the microwave off and on again because god knows what new combination of settings they’d put the microwave to. And then they go “ahahaha oh your microwave! I’ll get the hang of it one day!” Well, maybe if you just… stopped and listened to my instructions? Maybe read the words above the buttons before just jabbing at them frantically? It’s a microwave. I’m pretty sure everyone else they go to don’t all have one specific brand and type of microwave and I’m the outlier with a strange one. Everyone must have a different microwave, and the microwaves can’t possibly be that much different from each other! But they never said they were the same with everyone else’s microwave, just mine, as if mine was some sort of strange object they’d never come across before.

I had one carer who wanted to rush through everything. I cook frozen veg in the microwave, the instructions are on the bag. I read out the instructions and I told her to stir at the time specified on the instructions. She stood right in front of the microwave, took out the veg when it pinged the first time… stood there with her back to me, and I couldn’t see what she was doing, and then she put the veg back in to the microwave and then served it up.

The middle was still frozen. “Well you read out the instructions, love” this carer said to me. “I followed what you said. I thought it should have been longer.” Other carers had been given the same instructions (Measurements and time), other carers followed the same instructions, and I had no problems. The food was cooked through just fine. Other carers also turned and talked to me whilst they stirred, and some even showed me to check I was happy.

Maybe the problem was actually she didn’t stir the veg? That’s the only thing I can think of was the problem. She just stood there with her back to me and didn’t turn around, and she rushes through everything, and more importantly, didn’t even check when she put it on the plate.

They say the attitude “If I want something doing right, i’ll do it myself” is a trauma response, because you’re continually shown that you can’t trust anyone to do things as right as you. And sadly, that’s been my experience. Things going so wrong because my parents dropped the ball. Friends letting me down. Teachers, doctors, you name it. The amount of things I have had to take control of or been left in control of so things would be done right, or the times I’ve depended on people only to be let down. I could make a really long list, really. And I really feel it with these carers.

I also feel it with my Dad, who has taken over the feeding and watering of me during the pandemic because I had to ask the carers to stop coming (one refused to wash their hands). He is the type of man who will say “No, it’s not in there” when looking for something, and then sit back down again without looking properly. And that’s that. Doesn’t matter if it’s something needed, he can’t see it so that’s that.

So I have to get up and get it myself. Which would sound like i’m just lazy if it wasn’t for the fact that I’m physically disabled and living in a flat that isn’t fully wheelchair accessible. It’s not easy for me to “Just get up and look for something myself”, if it was, I wouldn’t depend on carers in the first place.

And one time, going back to actual agency carers, I had a carer swear down she absolutely couldn’t find something I knew was in the cupboard, and I had my Dad going on that I mustn’t have bought it, I must have gotten confused, if they can’t find it then it isn’t there and I shouldn’t go on about it. Because apparently sauce with my meal isn’t a big deal. This is despite the fact that I saw my Dad put it in the cupboard the week before, when I bought it. But he couldn’t remember, and she couldn’t find it, so clearly I was wrong and mistaken.

The next day I went in to the kitchen – Again, not something easy for me – and I looked in the cupboard that I saw my Dad put the sauce in, and what do i find to the right of the door? The jar of sauce I definitely did not buy and absolutely was not there. Right there. Where I said it was. I’m a few feet lower than the cupboard. If I can see it from my height, I have no clue why the carer, at a more average height and actually able to look into the cupboard, couldn’t see it.

(The reason is she didn’t look properly, and it wasn’t important to her to find it, and so she clung on to my Dad’s explanation of me being an absent minded fool with a poor memory over my own word of telling her I definitely bought it and it was definitely in there.)

It is so frustrating that this is what I have to put up with. And I’m not looking forward to restarting the care package when the pandemic is over and I’m not at risk of carers bringing it in.

So i’ll have daily calls of people coming in, trying to put the light on from the wrong side of the wall, trying to start the microwave with the percentage button, trying to start the microwave with the deftost button, and giving me half frozen food because they don’t want to listen and don’t bother checking food on dishing it out.

And if i could do it myself, I’d do a damned better job, but I can’t, and that’s why I depend on other people in the first place.


Is it me, or am I just unlucky with the media I watch?

Sunday 22 November, 2020

After hardly watching any films almost all year, and I mean I watched three films between the months of February to November 2020, and two of them were more “On in the background whilst I was in the room and I kept turning around to look at the telly”, I finally felt curious about one film enough to get Netflix back, sit in front of the telly, and watch The Old Guard.

Because, since it’s release during the summer, it’s like everyone has seen this film, and i’ve spent the last however many months dodging meta, gifs, memes and reaction posts about it. And finally I thought, i’ve absorbed the whole story of this film through cyberetic osmosis, I really have to watch it for myself and see if it’s worth the hype.

And I did, and… I’m not sure about the latter. I really liked the film, don’t get me wrong. I like it how it is, I just don’t think it was as Amazing with a Capital A as everyone made it out to be. I do think it’s one of those films you notice more things in the more you watch it, meaning there’s more to it than meets the eye… I just think, the little moments we got that we could hyperanalyse if we wanted, should have been made a bit more of. There’s clearly a lot of story there to be written, and it would have been nice for it to be expanded. Maybe, if they get the sequel, we’ll get more of that in there. But there’s always a risk with a sequel that it’ll go forwards from there, or that it’ll not actually come to light at all. And with the virus…

But here’s the thing. I knew it was about Immortal people, and so I guessed death would be a topic too, but I suppose I didn’t realise what the driving emotions would be behind the film. We also have a character, Nile, who talks about missing her mum. That hit hard.

There was also a scene where one of the characters gets one of the henchmen in the eye whilst fighting him.

Yesterday I thought, well, if I’m watching films again, and series 3 has finally started airing in the UK (some weeks ago now), I’ll watch that. I forgot that series 2 ended with a death, leaving the viewer unsure if it’s Nic’s sister who has died or her Dad. Series 3 started with Nic attending a funeral, maybe a grave… I had to turn it off straight away.

And then I watched The Witcher. It’s something that I had plans to watch as soon as I heard about it, but then obviously life happened, and so I didn’t. And everyone was talking about The Witcher! For the first half of this year, for all through the first Lockdown, I saw poeple bingewatch The Witcher. So, I got Netflix back and it made sense to watch The Witcher.

First episode: Death. First we’ve got one guy getting an arrow to the eye, then everyone’s dying, and then a motherly figure is wounded and the girl is crying, and then it gets worse…

Second episode: People are bullying a girl with Scoliosis. I get it, I understand on multiple levels. It’s just not that great when you have scoliosis and a hump and know it could have been so much worse if circumstances had been different (but not so different i’d have died…) and watching a bodily deformity be yet another emotional plot point to make a point. I don’t know which way it will go. I’m glad she’s not evil, because that’s a tired trope. But I don’t know if she’s going to be another Rezo The Red Priest type (though he was blind, but my point still stands).

Oddly enough, the reason I had to turn it off partway through the episode was not because of any emotional turmoil caused by the plot or character interaction, but because a british-accented character said the phrase “On accident” instead of the more correct phrase of By Accident and it pissed me off to the point I had to turn it off.

Well, I suppose in a way you could say that is emotional turmoil over character interaction…

Does anyone have any recommendations of films or shows for me to watch where no mother figure dies (or nobody gets shot in the eye with an arrow) nor gets bullied because their bodies are “outside the norms of perpetuated beauty standards”? Cos if you do, answers on a post card, people!

Or comment below, that would be more efficient. Especially because you don’t have my address, but there is a handy dandy comment box you could use.