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 🙂

Spoonie Raiding

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 😛 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 🙂

Summer’s Here

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

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 😛

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 😛 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 😛 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 🙂

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 😛 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.

The Advantages of Being Disabled

I want to make it clear that I’d give anything to not be ill and be able to do stuff for myself, and most of this list is not through choice, but since I’m in this position (almost completely bed bound and incontinent) I like to look at the positives of my situation.

  • If I’m in the middle of something, I don’t have to get up to go to the toilet. I just go where I am (I don’t have any choice in this as I have no control, but it’s great when I’m in the middle of a fight in World of Warcraft or similar).
  • I have all my meals in bed. Sometimes I even get fed.
  • I get to order people around to do what I want. (I do normally ask :-P)
  • I can wear pyjamas all the time if I want. All clothes are chosen for comfort first.
  • Nearly all appointments take place in my room. It’s very rare I need to travel somewhere, and when I do I do so lying down.
  • I have a cool electric bed that lets me raise my head, legs or even the whole bed at the touch of a button.
  • I get awesome drugs that would fetch quite a bit on the black market.
  • My lights are remote controlled.
  • When I can get out of bed, I never have to worry about finding a seat as I take one everywhere I go. With my Trabasack I have my own table as well.
  • I can drink lying down with my eyes closed using my Hydrant.
  • I don’t need to wear shoes if I don’t want to.
  • If it’s cold, I can always have my blanket. And electric heat pad. And penguins.
  • When I go to hospital, I take my own pillows and quilt with me.
  • I get paid to stay in bed all day.
  • I can nap almost whenever I want.
  • I never do the cooking. Or any housework.
  • I have a massive U-shaped pillow that holds me in place so I don’t have to use any extra energy to stay comfy.
  • I can’t be late for most appointments. And if I am late for a hospital appointment, it’s never my fault.
  • I’m not allowed to pick stuff up if I drop them. Someone else does it for me.
  • I can’t get sunburnt.
  • I don’t need to worry about catching public transport.
  • People aren’t surprised if I act odd- it’s almost expected.
  • I can go on my computer whenever I’m well enough.
  • I’m always surrounded by penguins.

Turning 29

https://youtu.be/6JARVfb-FBg

This song is my current obsession. Steven Universe is amazing, and I love that all the gems are genderless and just use she/her pronouns for convenience 🙂

My mood has improved again. I think it was just being overwhelmed and grief. I’m still sad that Ron isn’t here anymore, but I’m trying not to dwell on it.

My birthday was good 🙂 I spent most of that day (and the week around it) asleep, so didn’t get to do much on the actual day, but I got thoroughly spoilt with cards, presents and well wishes. Sammie got me a helium balloon penguin that can go on walks 🙂 I kinda walked it around my bedroom and though it says on the label it should only last 3-5 days it’s still just about standing (my birthday was on the 18th of June). Johan got me among other things Brightwing, a soft toy Faerie Dragon (from World of Warcraft and Heroes of the Storm), which is amazing! Her tail is jointed and her wings posable so I’ve been able to balance her on the bars of my bed. I also got a penguin towel, DVDs, an awesome penguin book, pyjamas and some other stuff from friends and family. Esther got me a Big Hero 6 birthday cake as well. Danni the spoilt penguin 🙂

All the financial part of the hoist is sorted, so now I’m just waiting on the contractors to give us a date. I’m really hoping it’ll be soon as I wanna get out of bed!

Johan is finally getting some support for himself! He’s been referred to an OT to assess what he needs help with in more detail, but he’s also hopefully going to go to this day service in Newcastle to do computer gaming stuff like reviews. So long as we can get care arranged for me when he’s gone (it’ll be up to 3 days a week) it sounds like it’ll be really good for him (I would say it would be good for him regardless, but he worries too much about me for that to be true).

I’ve had my care increased again. I now get an hour each evening, as well as half an hour in the morning. The extra time is helping so much, and it means I can have more done such as my hair washed and food made. I’m not normally up to as much in the morning so half an hour will be okay as it’s long enough to get me sorted if I’m awake. The social worker has closed my case though which will make sorting out the extra care for when Johan is out interesting, but hopefully we’ll get it sorted.

My current care agency has lost the contract for this area, which was no surprise to us. It’s meant to be transferred to the new agency on the 10th July but since we’ve heard nothing from the new agency yet I’m not so sure that’ll be happening. I’ll miss the carers I’ve got now but hopefully the new one will be better at organisation and letting me know of changes (the current agency not doing so has made me more ill than I would have been otherwise thanks to panic attacks and anxiety).

I still have a long list of things that need doing. Still need to see the GP,  still need to change my name with various people (I’ve now got a template letter thanks to Marga but Johan hasn’t given me an electronic copy of the Deed Poll for me to refer to when filling them out, and to print copies out of). I need to cancel a phone contract and transfer the number, and other little things like that. Bleh.

What I have managed to do is order a new bedside table (actually a storage unit) from Ikea, along with a large storage unit to replace the bookcase with missing shelves in my room and a new sheepskin for my wheelchair. I really like them and once they’re fully built and sorted (Johan’s built the bedside table but not the drawers to go in it, or the bigger storage unit) it’ll help so much to keep my room organised.

I’ve also bought a new cooker as I’ve been wanting to replace the old one for years as it’s not very good and the grill doesn’t work. The credit card is useful for that kind of thing (I’m definitely able to pay it off well within the interest free period so I’m not too worried in it getting out of control). It’s arriving today (1st July according to my tablet) and I’m really excited!

The other big thing I’ve sorted is changing energy supplier as the deal I was on was ending. Found one that’s quite a bit cheaper (and the direct debit is nearly half the old one) and the customer service is meant to be better. I’m currently over £500 in credit with the old one so getting that back will be nice. It’ll more than cover the cost of the cooker 🙂

My health has been a bit wobbly recently. My digestion is getting worse (main reason I need to speak to the GP) and the fatigue, weakness and spasms have been bad. Sensory stuff has been pretty okay though which I’m grateful for, so when I’m awake I can sometimes watch something on telly (I watched Wreck It Ralph with Johan, and Vampire Academy by myself a few weeks ago) or maybe read a children’s book on my Kindle. The fatigue has been annoying and Johan has said I’ve been more out of it than usual recently, but at least I can cope with some light and noise and things.

The spasms have been troublesome as they’ve made things like pad changes harder than they’d normally be, and I’ve had to be fed which is the one thing I still really really hate about being ill. Pain levels have been pretty bad as well but with coping with sensory stuff better I’ve been trying to distract myself. Of course after weeks of sleeping more than being awake, I’ve now been up over 28 hours so I’m either going to see an improvement in health or I’m going to crash badly. It’s partially been due to meetings with social workers and similar people so not all my fault, though when I’ve been able to I’ve been going on my computer. It’s a great distraction from the pain and I’d rather than do that than increase my pain killers if I can get away with it. Nausea has also been worse than normal, though that’s probably related to the digestion issues getting worse (I’m still bringing my tea up even though it was over 7 hours ago and I’ve had supper since).

I’m still playing my computer games. World of Warcraft had patch 6.2 come out, so I’ve been attempting to do some of the missions and quests for that the few times I’ve been on since. I’m also working on pet battles a bit as it doesn’t require that much concentration, being turn based (though I’ve sometimes phased out for long enough I’ve been kicked out of the battle). I bought Portal and Portal 2 for Sammie and her best friend during the Steam sale, and I tried a bit of co-op of Portal 2 with Sammie one evening (Sammie is better than me and it’s a bit too thinky for my foggy brain right now). Not really played any other PC games as when I’m on there I mostly want to play WoW or sort out important stuff like bills and shopping.

On my tablet I’m still playing High School Story, DragonVale, Hollywood U, Kim Kardashian Hollywood and AdVenture Capitalist. I’ve also started playing EZ PZ RPG which is an idle game so it doesn’t matter if I don’t log in for ages. I’m currently partying for a male writer in High School Story, breeding for Summer and Halo dragons in DragonVale, a female Superhero in Hollywood U, and very slowly doing quests in Kim Kardashian Hollywood. They’ve made Kim Kardashion Hollywood harder recently so I’ve been spending less time in it and no longer trying to get to the top of the A list as fast as possible, but the storyline is still entertaining so I’ll keep playing until I get bored.

Johan bought a Wii U recently so I’m hoping when I get a bit better I’ll be able to try and play Mario Kart. He also had to buy a new motherboard, cpu and ram for his main PC as his was blue screening and we couldn’t narrow it down to one component. It’s been a bit of an upgrade for him and it seems much more stable which is good news. Mine also blue screened yesterday but I think it was due to the webcam driver so it’s not quite as bad (especially as I don’t get on everyday).

I’ve got lots of things I want to do in the near future, and I hope I manage at least some of them. I was hoping to get out of bed for my birthday but that didn’t happen as I was too ill so I’m hoping to manage it soon (with Johan hauling me back into bed) as I really want to get back in my chair. I should probably be patient and wait for the hoist so I don’t risk Johan’s back but I don’t want to 😛