Apr 232016

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character 😛

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.

 Posted by at 12:54 pm
Nov 072015

I am super tired thanks to bad sleep and trying to watch Blizzcon, but I am happy 🙂

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! 😀 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 😛 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 😛

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 😀

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 😉

 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 😀

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 😛 (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 🙂

 Posted by at 11:45 pm
Nov 082014
Wearing my Blizzcon t-shirt. Primrose wanted to say hi too.

Wearing my Blizzcon t-shirt. Primrose wanted to say hi too.

Always need more penguins.

Today is the second day of Blizzcon. I’m so happy I’ve been well enough to watch most of it. Yesterday I managed to watch stuff all the way through to the end of the costume contest, which was awesome. Today I started watching stuff when it began again, and if there hadn’t been a little accident with the fire alarm I’d have probably watched it all the way through today. As it is I’m taking a bit of a break now from watching it to kinda rest and to write this. I even put my Blizzcon t-shirt on today (though the awesome picture is on the back so not easily seen when in bed, and the dark grey on black isn’t easy to see in photos).

With the fire alarm that didn’t affect me too badly by itself (a bit of body jerking and becoming non-verbal which I can cope with), but the care call alarm went off (to check we’re okay) and the high pitched noise of that went right through me and made me feel horrendous for a bit. Yup, the care call alarm is worse than a fire alarm. If it weren’t for the fact if there is a fire it could save my life (they know I’m bedbound and will call the fire brigade if there’s actually a fire/we don’t tell them we’re okay if the alarm has gone off) then I’d consider getting rid of it.

My favourite parts of Blizzcon so far have been the World of Warcraft panels, the announcement of Overwatch (first multiplayer shooter game I really want to play) and the Hearthstone expansion Goblins vs Gnomes. I’ve enjoyed everything I’ve seen though other than the technical difficulties 😛 If I weren’t too ill I’d be playing all the Blizzard games I have right now (that’s World of Warcraft, Diablo 3, Hearthstone and Heroes of the Storm). As it is I’m hoping I’ll be okay on Thursday to play at least some of the new World of Warcraft expansion, Warlords of Draenor.

Of the Overwatch stuff we’ve seen so far, Tracer is my favourite character but I really dislike her accent (fake cockney). Surely Blizzard could find a British voice actor for their British character?! The idea behind her character is awesome though. The character I’d most feel comfortable playing from a type perspective will probably be Mercy, as she’s the main healer character. The whole idea is just awesome though and the cinematic they had was amazing, especially with little things like the security guard playing Hearthstone 🙂

I’m hoping tomorrow to catch up on some of the panels and things that I’ve missed, but if I’m not up to it I have a couple of weeks to do so. So many things I want to do and not enough spoons to do them all. I can be excited and happy about them though 🙂

 Posted by at 11:59 pm
May 022014

Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!

  • I played lots of Diablo 3. It is fun 🙂 I bought the Reaper of Souls expansion when it became obvious I was going to finish it 🙂 I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
  • I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
  • I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining 🙂 I asked if they’d considered children’s books for future episodes, and now they are doing so 😀
  • Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
  • I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later 😛
  • Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep 🙂
  • Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
  • Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
  • Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
  • 25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy 😀
  • 30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film 🙂 Later on had cuddles with Johan which made up for it 🙂 Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again 🙂
  • Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick 🙂
  • Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
  • The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
  • I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
  • After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet 😀 The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin 😀
Danni outside in the sun with Penguin, Primrose and Poseidon

Danni outside in the sun with Penguin, Primrose and Poseidon

 Posted by at 9:54 pm
Apr 062014

As part of the World of Warcraft Annual Pass a couple of years ago, I got a free copy of Diablo 3. I wasn’t really well enough to play it, but now that Johan was playing the expansion and he said they’d made it a bit easier I decided to give it a go.

I’ve made myself a Wizard. So far she mostly runs around in a bra and not much else firing arcane missiles at various evil beings (and bookcases which hold gold instead of books). I’m hoping eventually she’ll gain some clothes as it’s got to be a bit cold. The story is interesting and the gameplay is easy enough on Normal for even my foggy brain. I’ve yet to come close to dying, and this is with me going pretty much blind during a boss fight (lasted about a minute – I just pressed my mouse buttons and when my vision came back it was obvious the boss had died a bit before). It’s impossible to fall off ledges and stuff, and I’ve rebound all my attacks to my mouse (a Razer Naga with 12 buttons on the side) so I rarely have to use the keyboard. I’m having fun and maybe my character will wear some clothes when she’s higher level.

Last week I had a date night with Johan. We got a takeaway and watched Despicable Me. It was a really good film and I was glad to see it. Unfortunately I’ve had quite a bit of payback since then and overall I’m not doing great. I’m not terrible either (can still get on computer and play some games) but needing a lot of sleep and having to take more medication than I really like to cope. A bit sucky but it could be a lot worse and I’ve been watching a lot of kittehs which has kept me very happy 🙂

I’ve not been playing very much World of Warcraft recently, but when I have been in game I’ve been working on pet battles and getting the items from rares in Pandaria on Danni. Now I have decent gear (mostly from Ordos and from when I was still running flexi raids) the only ones I really struggle with are Jinyu and Pandaren at level 90/91, and both of them I can get down with a bit of luck with their casts (not healing with Pandaren, only one Torrent for Jinyu). I managed to get Glorious! not too long ago so now I’m only focusing on those with items I want (which is all of them that aren’t gear). Since a lot of it is just flying around looking for the rares it’s been quite relaxing.

One thing I’m happy about is the Battle.net launcher now lets me chat to people without being in a game 😀 I have a couple of friends I only talk to through Battle.net so being able to communicate with them even when I’m not able to be in WoW/Hearthstone/Diablo is awesome. Not that I’m actually using it much, but having the option is great. Yay for improvements!

The domperidone is still making me dopey. Because of this I’m now calling it dopeydone and it won’t get its name back until it stops making me so out of it. It’s helping a tiny bit with digestion (at least making my digestive system noisier) but not doing much for the nausea so I’m still needing cyclizine sometimes. The combination of dopeydone and cyclizine makes me really out of it and often sleep. Could be a lot worse though so I’m sticking with it for now in the hope the dopiness eases off at some point.

It’s currently Autism Awareness Month which I’m mostly ignoring. I did write a couple of tweets for Autism Awareness Day (2nd April) but otherwise I don’t plan on doing anything. I could have delayed my previous blog post until this month but meh 😛 I’ve been having a lot of fun discussing people who lack autism with Johan though, and how weird they are and what a tragedy it is to lack autism 😉

My sister Becca has been diagnosed with ME this week. It is not a surprise as such as she’s been ill for a while now, but still it’s sad as I don’t like her being ill. I’ve been lecturing her for a while to take it easy and stop pushing to do things, and she says she’ll actually do it now (she’s looked after me so knows what severe ME can be like). There’s definitely a genetic component to it, though interestingly Becca doesn’t have the hypermobility I have (nor can she touch her nose with her tongue, which everyone else can do). I’m going to try and support her as much as possible and hopefully she’ll learn from my mistakes and not become as ill as I am now. She told me she was bored, so I jokingly told her to start a blog. She actually did, and you can see it: waddlewddle.

Johan is currently defrosting the freezer. Turns out the fast freeze option has been on since we moved in, which would explain why the drawers had frozen solid. We’ve lost a bit of food but being able to use all the drawers again will be great and I did get an ice lolly which was nice 🙂 This coming week we’ll be doing a big shop to restock the freezer and I’m hoping to write an email to social services asking about the hoist. I’ve also got various things to buy so that will be interesting. Hopefully I’ll start feeling a bit better as well 🙂

 Posted by at 10:47 pm