"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
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.
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.
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 🙂
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 🙂
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.
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.