Nov 142015

I’ve currently got a problem where I can’t sleep at night. Since that’s when other people sleep and most things happen during the day, that’s an issue. I’m hoping that I’ll soon get over the anxiety and paranoia that’s stopping me sleeping then.

Carer arrived this morning 50 minutes late, as the carer who was meant to be coming phoned in sick, and I was about to get stuff done when her perfume hit me. Since she was still standing in my doorway it must have been extremely strong as I was struggling to breathe without her coming close. I asked her to leave (no strong perfumes is on my care plan and door) and it took over half an hour for the smell to dissipate. Not what I was wanting. I was hoping to wake up for the evening carer, but they came in so quietly that Johan didn’t even realise they’d been until he heard her putting the keys back into the keysafe. I had set an alarm but it didn’t go off for some reason, so I’ll try again tomorrow. The one time I wanted to be woken up it didn’t happen πŸ˜› (I don’t blame the carer for that.)

Spoke to Sammie this evening and she beat me in the Tavern Brawl in Hearthstone. She’s definitely getting better at the game- making better decisions and understanding what to do more. I took a break to watch Doctor Who then we talked after while she was playing Minecraft and I was working on a loom band bracelet. Speaking to her cheers me up loads πŸ˜€

My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn't know if I'd need any more).

My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn’t know if I’d need any more).


I’ve managed to make two loom band bracelets in the last couple of days, both reversible and based off fishtail patterns. The first is called a reversible slipfish, and I made it with glitter jelly bands from my massive box of loom bands (it has 15,000 bands in that should keep me going for a bit). I first tried it a couple of days ago but made a mistake that was really noticeable and too far down to really repair, and I wasn’t happy with the way the colours had gone so while I couldn’t sleep last night I decided to start again. The design makes my hands sore and crampy quite quickly so I have to take a break every couple of minutes, but I managed to finish it tonight while talking to Sammie. I really like the design and I want to experiment with different ways of creating it to see what happens when I’m more confident. The only problem I really had was the glitter from the bands getting everywhere, so my bed Trabasack and top are now covered in glitter πŸ™‚ The YouTube video tutorial is atΒ

The second is called the 5 pin funky fish, and I decided to use multicoloured bands for that one. As I made it using a monster loom it was a lot easier on my hands so I could go longer before needing breaks, and I managed to complete it in a couple of hours. I like how there’s two fishtails on one side and three on the other. The tutorial video is atΒ I’m getting better at making them though I still have an issue with bands twisting and sometimes making mistakes, though that’s also giving me lots of practice in how to go back and fix them. I think I might be able to consider loom knitting as not needing to hold everything up and being able to put it down whenever is what’s making this possible for me, along with only needing to concentrate on what one hand is doing (and I alternate them to try and cope with cramping).

One side of the reversible bracelets. The SlipFish is on the left, the 5 Pin Funky Fish is on the right.

One side of the reversible bracelets. The SlipFish is on the left, the 5 Pin Funky Fish is on the right.

The other side of the reversible bracelets.

The other side of the reversible bracelets.

I’m hoping tomorrow to maybe be able to go out, or at least get into my chair. I’m also going to try really hard to be awake for the evening carer as I need my hair washing desperately. The next time I get into Gateshead or Newcastle when places are open I’m hoping to go to a barbers to get all my hair shaved off, but until then I’ll just need to figure out what to do with it.

I’m also looking for dystopian young adult fiction where romance isn’t one of the central themes. This is harder than it should be. Why does it always have to involve love interests, and often a love triangle? There’s more important things to be doing! Silly books. I noticed as a kid that most pop songs were about love or romance in some way, and didn’t like it. Even now I get irritated by many songs are like that. Come up with other topics please?

Before I come off puter tonight I’m hoping to catch up on some more of the Blizzcon panels I missed, and work out what bracelet to make next. This is addicting πŸ™‚

 Posted by at 11:55 pm
Nov 132015

Has been a weird day. My original plan was to have the morning carer make me bacon and eggs, sleep until the evening carer, have my hair washed then go on my puter to speak to Sammie. It didn’t go to plan.

The carer this morning just never showed up. It was very windy so every time I heard a noise I was on edge just in case it was the key safe. Johan stayed until 10.30am then had to leave for his day service, so he gave me some fruit as I was hungry and he didn’t have time to cook me anything. I stayed awake until 12.30am and though someone knocked on the door around 11.30am, I don’t know who it was and if it was a carer they’re meant to use the key safe as I’m not able to let them in.

Since I didn’t get to sleep until 12.30pm, I didn’t wake up until 7pm, missing the evening carer (who did come, and was a nice one who is going to ask the agency why carers aren’t showing up). Once painkillers had kicked in and things I went on puter to talk to Sammie and Johan made me bacon and eggs. The food was nommy (they were duck eggs for a treat) and Sammie has had a really good day so that cheered me up really well. She told me she was glad that I’m autistic as she thinks it’s better for her, as she’s grown up knowing about it and her best friend is also autistic. I thought that was really sweet πŸ™‚

After both downloading the Hearthstone patch we managed a quick game of the tavern brawl before she had to go to bed. She’s asked me to tell her the backstory of Nefarian and Ragnaros so I need to revise that before I next speak to her (I kinda know it from playing World of Warcraft but it’s been a while since I’ve been in Blackrock so it’s a bit fuzzy). I had a lucky win, as I was Raggy and my hero power hit Nef’s face. If it had missed Sammie probably would have won πŸ˜›

I was on a big high from talking to Sammie and planning to talk to her again tomorrow, when I saw the news about the attacks in Paris. I have a friend visiting there and he’s okay, but I really hope it ends soon. I hate it when bad things happen and I hope those behind it are brought to justice. For now I just want everyone to stay safe, and I’ll keep praying.

 Posted by at 11:57 pm
Nov 092015

Today is a bad day. Lots of panicking and no speech and being terrified someone was breaking in when home alone. Silly brain.

Here are some kittehs from the kitteh game Neko Atsume. My sister Becca has also adopted a kitten and asked me for a name so she’s now called Luna. I’ll post a picture of Luna when able to figure it out.



 Posted by at 10:32 pm
Nov 082015

Well, maybe not but it does make me feel better.

I had the worst care call with this agency so far this morning. The care worker scheduled to come for my call phoned in sick, and as they’re understaffed the supervisor on call came to do my call. She was incredibly loud, and worse than that had her phone ringtone set really high so every time it went off I felt really ill. And it went off several times. I was hoping to have my teeth brushed and was considering asking for breakfast, but the phone going off so many times so loud right next to me meant I lost speech and panicked completely, so Johan had to ask her to leave. Due to the panic attack I ended up sleeping most of the day. I understand she needed to be contactable but after the first couple of times of me showing obvious signs of distress (hands covering ears, face scrunched up, curling up into a ball) I would have thought she’d have at least turned it down, but nope. And she’s meant to be one of the more senior members of staff.

This evening’s call was much better. A new care worker, but she actually read the sign on my door and was quiet. Johan helped explain what to do as I still couldn’t speak and was still rather anxious, but she listened and did what was needed. We’ve asked her to tell the agency we like her so we want her more often. She was surprised at how many different people I’ve had coming for my calls (apparently you’re not meant to get more than three different care workers a week- I’m getting at least 7) so understood why I wasn’t coping. She’s also going to ask for a rota for me as even just knowing who’s coming and when will be easier.

I’ve spent most of the evening playing games on my tablet and reading What If? by Randell Monroe. I’d bought the book for Sammie last year and she was really surprised when I told her last week that I’d not read it yet, so I bought the Kindle version for me. I’ve read the blog but it’s nice to have them all together, and I’ve seen a couple of questions I’d not read before. My laughing at the book made Johan interested, so now he’s reading it as well on his iPad. I had cheesy chips for tea which I’d been craving for a while.

Johan made me a cup of tea this evening! I’m not 100% sure, but I think it’s the first time he’s ever made me one. He’s made me hot chocolate a couple of times before, but he’s scared of normal kettles so it was a special thing. He’s not as scared of the new one cup kettle though so hopefully I’ll be able to have tea more often. Unfortunately the milk we had was bitty (the use by date was tomorrow so we thought it’d be okay) so he had to use the UHT milk I keep in for porridge but even with that it was lovely and made me feel better πŸ™‚

I’ve got loads of Blizzcon panels and eSports to catch up with, but I’m taking a break today as I’m not feeling up to it after this morning. Hopefully I’ll get through them the next few days. I’m glad I saw the World of Warcraft Q&A yesterday, as they were the best questions asked so far, and Red Shirt Guy was first again! Finding out they’re just letting us switch specs whenever we like rather than having to choose two out of three (or four if you’re a druid) made me really happy. Johan and I both want to play more Heroes of the Storm when I’m up to it as it’s loads of fun.

I’ve got nothing particularly planned this coming week other than the CFS team coming out on Thursday. It’ll be the first time I’ve seen them since I got the hoist so it’ll be good to see if they can help me plan how I’m going to get out of bed more without risking going backwards. It would be easier though if I wasn’t so anxious from the care agency though as it takes so much energy I’d rather be using on things like getting up more or being on my computer. If it carries on much longer I might have to ask about going on direct payments now the council is able to manage them for me (which wasn’t available the last time I tried it). Hopefully there’s an agency in the area that can meet my needs as I just need consistency, communication and a bit of understanding of how things affect me.

 Posted by at 11:57 pm
Nov 072015

I am super tired thanks to bad sleep and trying to watch Blizzcon, but I am happy πŸ™‚

Played some Hearthstone earlier for the Co-op Tavern Brawl which was awesome (luckily Sammie is understanding when I have very little concentration). Also watched Doctor Who with Esther which was good. Osgood! πŸ˜€ Also had pizza and scone and time with Johan.

Favourite announcement from Blizzcon so far is the new transmog system for WoW. I knew that Loremaster would come in useful for something πŸ˜› They’ve even managed to convince Johan to keep his subscription when just yesterday he said he was taking a break and maybe giving it up πŸ˜›

I’ve not really seen much Diablo 3 or Starcraft stuff yet. I may have pre-ordered Overwatch as having watched Hafu and Trump playing on the beta I know I’m likely to enjoy it if well enough. I’ll probably buy the new Hearthstone adventure once I’ve completed Blackrock Mountain (I got as far as the mage challenge I think and just spent hours playing that). I already love Heroes of the Storm so I’ll be trying to spread the Cho’Gall virus with Johan πŸ˜€

I’ve got tons of stuff to catch up on but the vods are available for 2 weeks. Might take me that long to recover πŸ˜‰

 Posted by at 11:59 pm
Nov 062015

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 πŸ˜€

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

 Posted by at 9:11 pm
Nov 052015

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 πŸ˜› (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 πŸ™‚ Johan put the Overwatch decal I got in the Blizzcon bag on the laptop which looks awesome πŸ˜€

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 πŸ˜›

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 πŸ˜› Until then, I guess I’ll hang out and bed as normal πŸ™‚

 Posted by at 11:45 pm
Nov 042015

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 πŸ˜›

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 πŸ™‚

 Posted by at 7:17 pm
Aug 202015

Was talking to Johan today about how the last full progression raid I did (Firelands in World of Warcraft Cataclysm) I didn’t do too badly, but then got payback for ages so it meant I’ve never tried again (I’m also much more ill than I was then). During it I came up with the idea of Spoonie raiding, and what that would involve.

No longer than 15 minutes before a break.
No longer than 90 minutes a raid.
One raid a week.

Johan pointed out that it wouldn’t work at all for Mythic – Mythic Archimonde takes hundreds of attempts, and we’d fit in about 4 a raid πŸ˜› I said we might get it down if we started now and carried on until the end of Legion (the next expansion).

Obviously this was never a serious suggestion, and even with such a short schedule it would be too much for me (I’m only just occasionally managing heroic dungeons, and we massively outgear them now so it doesn’t matter too much if I lose concentration, which happens regularly). I know there are spoonies that do raid, depending on their energy and brain fog levels. I wouldn’t be surprised if there were guilds specifically for spoonies (I know there’s at least one for people with social anxiety).

I think I might have to accept that I’m too ill for any kind of scheduled raiding. I’m lucky that I can pay WoW at all, even if it’s from bed. Still, the idea of a Spoonie raid with other people at my levels of brain fog amused me πŸ™‚

 Posted by at 5:15 am
Aug 052015

And I’m lying in my bed like always. Have had the blind up and the window open a few times though πŸ™‚

My sleeping pattern has been non-existent recently, but I’m hoping to get it fixed soon. Missed the evening carer for over a week by being asleep so not had any big things done. I woke up at 6am today so I’m hoping to manage to stay awake for the evening call, but I’m already getting tired and it’s only early afternoon. Silly body.

The big news I have is I’ve got a date for my hoist installation! It’s being installed the 2nd September. Johan had already planned to go to Insomnia 55 the last weekend in August so we were already planning to have me in the care home, so it’s worked out really well. I’m really excited at the prospect of getting out of bed without worrying about how I’m going to get back in πŸ˜›

Johan’s day service thing is going well. He’s really enjoying it, and it’s nice for him to have something to do that’s not looking after me. We’ve not sorted out care for me yet, so I’ve been mostly sleeping while he’s there (cause of broken sleeping pattern, along with needing cyclizine a lot) but they’ll bring him back in an emergency. The new care agency isn’t starting until the end of September now, so hopefully we’ll get things sorted before then, as I’ll need to be reassessed due to having the hoist anyway (most agencies insist on two carers for hoisting).

My ability to cope with sensory stuff is improving, to the point where I’m actually thinking my room is dark sometimes πŸ˜› Have bought a light shade for my ceiling light to see if I can cope with having it on (main problem at the moment is it shining in my eyes above my bed). If not then I’ll get another lamp to put somewhere else in the room to increase the light levels when I can cope with it. Apart from 30 minutes in the morning, my bedroom doesn’t get direct sunlight and is sheltered by trees so it never gets that bright in here even with the blind up (my blind only reduces the light rather than blocking it).

Everyone except me is going on holiday πŸ˜› Sammie went on holiday last week, Johan’s planning on going to Insomnia 55 as I said earlier, and Esther is currently away. I was a tiny bit grumpy about it when I realised, but now I’m looking forward to the chance to have a bath and get out of bed while I’m in the care home, and after I get home getting out of bed and maybe having a shower. It’s weird not having Esther here, but I’m glad she’s had the chance to get away. One day I’ll be well enough to go on holiday myself πŸ™‚

I’ve managed to read a few books the last couple of weeks, which has meant I’ve caught up to where I’m meant to be for reading 50 this year. Mostly children’s books, but a couple of adult ones a well. I’m managing my computer several times a week so I’m going to start planning what I want to do on there when I get on, as sometimes I’m on but not really doing anything and then I kick myself when I’ve come off for not doing what I wanted. World of Warcraft is still my main game, and I’ve been working on reputations in Warlords and pet battles mostly.

I also installed Windows 10 on my computer and a different rom on my tablet. Windows 10 seems to be working well for me, as I mostly use my computer for games and web stuff now and they all work fine. I like the new start menu (finally removed Start 8) and it seems to run faster. My new rom for my tablet is CyanogenMod based, so I’m able to customise it more and it no longer has TouchWiz. Still got to work on it but it’s running faster and I’m on 5.1, which isn’t available officially yet.

Apart from my nausea and digestion issues (which are getting worse) I’ve been mostly stable recently. Still occasionally do too much and end up with payback, but I’ve mostly figured out my limits. The digestion issues are not good though, and I’ve still not managed to see my GP (with Johan being out 3 times a week and me being asleep during the day it’s been hard to arrange). Cyclizine is amazing even if it does put me to sleep, as it means I can at least keep my food down. My portion sizes are decreasing as I get full after less food now, so I’m a bit worried about weight loss (it’s hard to tell when I can’t be weighed, but my bones in my bum and hips are sticking out more). I’m going to buy some meal replacement bars since milkshakes are really not agreeing with me right now.

Otherwise I’ve just been doing normal stuff. Playing silly games on my tablet, bossing Johan around, arguing about wanting to do things for myself πŸ˜› I did get new bodies for Nicky and Penelope (we used penguin magic to transfer them) as their old bodies were dropping bits everywhere. Penguin is now demanding a new body but as they don’t sell his anymore it’s being a bit harder to track one down. I also got a new blue Trabasack to use when I’m on puter or in my wheelchair (which will be happening soon! Yay!). I discovered part of the reason I struggled with being on my computer was the weight of the keyboard, so I bought a lightweight one with purple leds (as it can be dark in here) and it’s making it much easier.

 Posted by at 4:19 pm