Oh No!

The good: Blizzcon started today, I had a nice care worker this evening, and I finally have my World of Warcraft posters up.

The bad: I slept most of the day, yet needed cyclizine so I need to sleep again now, meaning I’ll miss the rest of today’s Blizzcon stream. At least I saw the opening ceremony and all excited for the rest 😀

Take care. I have my Murlocs and Brightwing watching over me tonight with the penguins.

Remember Remember?

Today is Guy Fawkes’s Day, where the entire country sets off fireworks and sets effigies of the Prime Minister with a pig on fire (okay, the last one might just be Brighton). I managed to go out on the ramp and see the higher fireworks from the official display at Saltwell Park, as Johan was raiding and we weren’t sure how we’d get down there if I went in my chair.

Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.
Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.

My Blizzcon goody bag arrived this morning and I am happy with it. Johan had already told me he was stealing the bag, but I get to keep the rest of the items including the Psi Blade. I have whacked Johan over the head with it as that’s what penguins do 😛 (He is okay with this as it didn’t hurt). I’ll probably attach the Diablo keyring and Illidan badge to my Trabasack. I’m really excited for Blizzcon!

Johan decided he needed a laptop for going to the day service he goes to (as nearly everything he does is computer based and there aren’t enough computers) so he bought a Chromebook today. I agreed to pay for half if I’m allowed to use it for blog posts and stuff when I’m in my chair, and he agreed so I’m typing this on the new Chromebook 🙂 Johan put the Overwatch decal I got in the Blizzcon bag on the laptop which looks awesome 😀

I found it funny that I got into my chair at 6.30pm and managed fine, including watching fireworks outside (with music and ear defenders), watching telly and being hoisted back into bed after 10pm, but taking my hoodie off while lying down made me feel really dizzy and ill. My body makes no sense to me. I hope to figure it out at some point 😛

Tomorrow is the start of Blizzcon so my plan is to change my sleeping pattern to fit it. Whether that works or not I don’t know 😛 Until then, I guess I’ll hang out and bed as normal 🙂

I Like Co-op

Title has very little to do with this blog post, but I just played the Tavern Brawl with Johan in Hearthstone where we worked together to beat the boss, and it was fun.

I have been awake since 10pm last night. I’ve now been awake over 18 hours so hopefully will be able to sleep soon. This isn’t uncommon after activity so I’m not worried but not sure I’ll be awake for the care call tomorrow morning. We’ll see.

I’m annoyed at Tesco. It’s Guy Fawkes night tomorrow, and as it’s the first in a few years where I can actually go out to see some fireworks I wanted some traditional goodies for the occasion, so sent Johan out to get toffee apples, treacle toffee and parkin. He couldn’t find any of them in Tesco at all, not even a sign that they’d sold out. I know that parkin is a regional cake (common in Yorkshire and Lancashire, so both Johan and I both grew up with it) so I am not too surprised he couldn’t find it, but toffee apples and treacle toffee are both national traditional treats associated with the day, so I can’t understand a massive supermarket not having them. He’s going to hunt in Newcastle tomorrow to see if he can find some there.

I managed to get my computer working again overnight. First issue was the bootloader deciding it didn’t want to exist properly for some reason, and it was so broken it couldn’t even be repaired, so I gave in and reformatted Windows 10. That fixed that issue, but then it wasn’t detecting the second SSD I have where I store all my games and stuff I want to keep (all the important stuff is also backed up online but it would have been annoying having to download it all again). It was showing up in BIOS but not in disk management or My Computer. No idea what caused that or why it persisted through several reboots, but one person online suggested running a memory check and even though it came back with no errors after doing so it was showing up in disk management to be assigned a letter. Makes no logical sense but I’m not complaining now it works.

Next problem was trying to get sound working. I have a Bluetooth adapter my headphones plug into and I just couldn’t figure out why it wasn’t working. I spent a couple of hours trying to figure it out, before realising I needed to pair it to the computer for it to work. I’d been wanting to talk to Sammie but I didn’t manage to sort it until an hour after she’d left for school. Hopefully I’ll catch her soon as talking to her is one of my favourite things in the world. Just need to be on my computer at a reasonable time 😛

The rest of the day I’ve been dopey. I’ve been wanting to sleep since this morning but it just hasn’t happened yet. Had an anxiety attack around midday today and I couldn’t figure out what was causing it, which wasn’t fun. Johan gave me cuddles though and I eventually calmed down. On top that I had the anxiety and panic caused by not knowing what is going on with the care calls so I’m feeling really mentally bleh and not coping with other stuff as well as I was. I did manage to get my bedding changed at the evening care call though, and being hoisted into my chair while it’s being done is much less exhausting and painful for me than changing it in the bed would have been. I’m grateful that’s an option now.

I’m really hoping I’m well enough to watch fireworks tomorrow (I’ll be wearing ear defenders and maybe ear plugs to deal with the noise). I’ve also got Blizzcon to watch this weekend so hopefully the anxiety won’t spoil things too much 🙂

Computer Issues

I can’t remember what exactly I wanted to blog about today, but when I started up my computer to write a blog post and do a food shop, I got a lovely blue screen of death saying my bootloader is broken. Johan is currently sorting me out a repair drive so I can fix it, but it means I’m not able to do a shop in time for delivery tomorrow as it takes forever on my tablet (which I’m using to write this).

Today I get the payback from the outing. Luckily it’s purely just some extra tiredness, so I had a 5 hour nap earlier which will hopefully help (I’m still rather zombified). My arm is still a bit sore from the flu jab but otherwise I’m just at Danni normal levels of pain, nausea and blehness, which I’m used to. Luckily painkillers (or pain reducers as I call them, as they don’t kill pain just make it more bearable) are working so I’m a bit less grumpy than when I first woke up. The cleaner came today and sorted my room out a little bit, which was good.

On Thursday I hope to go outside on the ramp to watch the fireworks, as we should be able to see the official display from there without the crowds or ticket prices. Advantage of being up the hill from the park 🙂 I’m wanting to have toffee apples and some treacle toffee. Maybe also hot chocolate 🙂

I’ve spent a lot of money this month, more than I originally planned. It’s all been on good stuff though, like a hot water dispenser kettle as Johan is scared of normal kettles so I can have hot drinks (he actually made himself a cup of tea earlier!) and a Brita filter jug to see if we can make the water taste better here (I like the local water except from our tap, so we think it’s our piping or tap that’s the issue). It seems to make a tiny difference? The new kettle Johan wasn’t sure about until we got it, but he already really likes it.

I’ve also bought some winter waterproof stuff for my wheelchair- some leg covers that don’t stop me opening the door with my feet (my current leg cosy makes it impossible) and a cape that should be easier to put on than a coat (we’ve also lost my coat which is a bit annoying but this will replace it I hope). Not cheap but disability stuff never is, and I couldn’t find another option in purple that was cheaper so I’m hoping they’ll help.

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I’ve also recently got into making loom band bracelets. It’s a lot of fun, and patterns that use a mini loom don’t hurt my hands too much (I can make two of them during a session, and only one that uses the full loom). I spent some of today organising my bags of bands into a container by colour to make it easier to plan what colours I’m using in the future. Johan has set me a challenge to make a loom band belt so I just need to find a decent design and then I’ll be working on that. I’m really happy to have found something I can do as my hands are too silly for crocheting or knitting, which I want to learn. Being able to put it down pretty much when I need to helps as well. As I’m late to the trend all the sets are really cheap which is awesome 🙂

Apologies if there are any extra spaces in the blog post. My tablet puts them in automatically after punctuation but I also add them automatically when typing. I’ve gone through trying to remove them but I may have missed a few. Hopefully tomorrow my computer will be fixed and I’ll be back to blogging on something a bit easier 🙂

Home Care Issues

At the end of September, the care agency providing my home care changed, as the previous agency lost the contract for not sticking to it. I’d had various issues with it, mostly due to lack of communication (I need to know what’s happening and when or I panic). I hoped this new agency would be better, but unfortunately it’s not been.

The new agency has only just started in this area, and they took on a lot very quickly. Unfortunately that meant they were incredibly disorganised. My care plan is a mess (the care workers struggle to find what they’re meant to do in it), it was missing the communication book for the care workers to write what they’ve done, and they promised to provide me with an email address but haven’t.

That was just the start. They’ve changed the times of some of my calls without informing me, and don’t send rotas so I have no idea who is coming or when. One morning call (written in my care plan as 10am) didn’t turn up until 12.30pm. Then a lot of times the carers just don’t turn up. There was one week where I only actually got 6 out of 14 calls because no-one actually turned up for the call. That is improving a little bit now (it’s been just over a week since the last missed call) but it’s made me very anxious and panicky. There have also been care workers showing up smelling so strongly of perfume or cigarette smoke it immediately makes me feel incredibly ill (the agency are aware that I can’t cope with strong smells and said all care workers are to read the sign on my door, which mentions it but often gets ignored). That’s on top of the problems of not being able to explain what I need every time and getting several different care workers each week, most of whom are new.

Johan hasn’t been able to contact them about any of this as he’s been too anxious, but he did tell his social worker when he had his review. The agency claimed he had been sending the carers away, but that happened twice on one day, due to that care worker smelling so strongly it took over an hour for the smell to dissipate (and Johan found it too strong, so it wasn’t just me). Most of the rest of that week no-one showed up with no explanation.

Physically I’m doing much better, but I’ve been doing a lot worse cognitively, at least partially because not knowing what’s going on with the care workers means I get incredibly anxious twice a day, and often end up having a panic attack, which was rare until this started. I’m now terrified to be left alone if a care worker is going to turn up, as I have no idea if they’ll know what to do and I’m not always able to remember things myself (mentioned in the care plan). I know me being autistic makes things a little more complicated, but just telling me when things change would be a massive improvement. If it weren’t for Johan needing the help I’d just cancel them all until I was able to cope again, but Johan doesn’t feel able to do some things and he shouldn’t have to.