Category: Physical Disability

Danni

Blogging Against Disablism Day 2016: What I Want To See

Autism, Blogging Against Disablism Day, Danni, Mental Health, Physical Disability

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

Danni

How Did It Get to April?

Autism, Blizzard, Computers, Danni, Diablo 3, Gaming, M.E., Mental Health, Penguins!, Physical Disability

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.

Danni

Gaming Update

Blizzard, Danni, Gaming, Hearthstone, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Good news everyone! I think I’m over the relapse! On Wednesday I went out (into Gateshead for Burger King and shopping in Tesco because it was evening and there wasn’t much else open) and it was fun. I’ve also been able to go on my computer a bit more, which is making me very happy (not least because Smartflix is awesome and has tons of shows that I can’t stream on Netflix using my Chromecast without lots of config I’m not well enough to sort). I’m not that much better than I was, but the small amount I am is the difference between lying in a darkened room and being able to go on my computer and go out. Tiny things like being able to tolerate a bit more light, noise, movement and touch, and not needing to be completely flat. I’m so happy to be able to do stuff, as that relapse lasted a bit longer than mine usually do so I was scared it was becoming my new normal. The only issue now is I seem to be mostly nocturnal, which makes communicating with people and doing things hard 😛

One thing I have been doing is playing games. The rest of this post will be about them so it’s likely to be of no interest to anyone but me 🙂 I’ve introduced Sammie to World of Warcraft (I’m sure it won’t be long until she’s better than I am) and recruit a friend makes levelling fast. I’ve not played as much with her as I’d have liked but hopefully we’ll get more time now I’m doing better. When I’ve been on when Sammie’s not I’ve been doing a bit of work on the legendary ring quest chain. I got my third elemental tablet thing so my ring is now item level 715. The next step is to get Blackhand’s arm which is kinda disgusting but at least it’s not going through poop. I’m hoping to work on getting Pepe soon and pet battles.

On my tablet I’ve been trying new games, and playing old ones. In DragonVale I currently have 248 of 269 total dragons, and of those currently available I need about 6. There’s a few more than I can get with help through the co-op breeding cave but the earliest I can complete the collection is during Bring it Back in December. I’m happy with the progress I’ve made though 🙂

I’ve been playing a lot of Neko Atsume and recently got every single memento in the game. I already had every goodie so now I’m slowly working towards getting every theme and hoping they release new content. The cats are so adorable though so I’m really happy to play it.

In High School Story I’ve managed to complete all the current story lines, which I wasn’t expecting to do yet. I’ve got 15 classmate rares still to get (I’ve got the common gender of each type already), but I’m in no rush. I’m current working on getting a female hacker. I was frustrated that some of the goals seemed nearly impossible but they have been a bit easier recently so I’m happy there.

Hollywood U has been a bit more frustrating on the goal front, not least because they often don’t show up when they’re meant to so I end up getting less time (I missed nearly a day for this week’s). I’ve completed all the quests so I’m just working on the goals and getting both Critics, as they’re the new type and I’ve not managed to get either yet. It’s only been a few days though.

I’m still playing Kim Kardashian Hollywood, though I’ve come close to quitting a few times. The issues I was having seem to have been fixed, and though it’s still buggy it’s playable now. I’m level 39, number 1 on the A+++ list, and have mostly completed the quests, other than the most recently released ones. I try not to worry about the weekend events, so unless there’s something I really want as a prize I just do them as and when. During the week I also work on levelling the VIPs through Hangouts and jobs, though I’ve only ever got the special reward once. At least it doesn’t require much concentration.

A new game I’ve been playing recently after being invited by a friend is Happy Street. I’m still not entirely sure what I’m doing, but it’s cute (if a bit obsessed with poop) and I seem to always have something to do so I’m keeping it for now.

I’m also trying Britney Spear’s American Idol at the moment. It’s not officially available outside of New Zealand, which explains why none of my friends are playing it. The game is pretty fun but very laggy so there needs to be some work before it’s released more generally. It’s a pop version of the Kim Kardashian Hollywood game, but more purple. My character is called Adélie Gentoo and all my songs are about penguins 🙂

One game I tried and then gave up on with Kendall and Kylie. That game is so slow I can read a chapter of a book in the time it takes to load (anything from 3 1/2 to 7 minutes). For a mobile game it’s terrible. Not only that, but since update 1.1.0 the game doesn’t seem to save correctly, so any progress is lost. More recent updates don’t seem to have fixed it. Luckily I’d already reached level 8 for the crossover stuff in Kim Kardashian Hollywood, but until they do some major work I won’t be playing any more of it. It’s a shame as I quite enjoyed the storyline.

Other games I’ve got installed on my tablet right now are AdVenture Capitalist, 80 Days, The Room 3 and a couple of different Sudoku games. I’m currently waiting for AdVenture Capitalist to be completable sometime this millennia (no joke), 80 Days I got annoyed with as I missed a couple of connections due to brain fog so I’m taking a short break before trying it again, and the Room 3 I’m playing in bits as it requires quite a bit of cognitive energy. The sudoku games are fun for me and a way of judging how I’m doing mentally- the logic required is normally very easy for me, so if I’m struggling to complete an expert puzzle or easy killer sudoku I know I’m not doing great. If I can’t solve one of the easier ones then I know I need to rest.

The last game I have is Hearthstone. For a while it was unplayable on my tablet, but I reset it while installing a newer version of my rom and it’s running better now. I’m mostly playing the Tavern Brawls when I get the chance, as I don’t know the current meta game well enough to work on ranked. Hopefully now I’m getting on my computer a bit more I’ll be able to play some Heroes of the Storm and other games, but with having to do adult stuff like paying bills, sorting money and food shopping when I’m on here as well I’ll have to wait and see if I can manage it more frequently.

Danni

Stickman Communications: When Brain Fog Clouds My Words

Autism, Danni, Important Stuff, M.E., Physical Disability, Real Life

I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.

http://stickmancommunications.blogspot.co.uk/2016/02/when-brain-fog-clouds-my-words.html

*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.

Danni

What’s Health Again?

Blizzard, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft

A quick blog post as I want to blog at least monthly, but this month I’ve not been well even for me. January relapses are normal but this one is lasting longer than I’m used to.

I have a cold. I’ve had it now for several weeks, might now be months. I’m sleeping a lot, though my FitBit is telling me that I’m getting a lot less sleep than I realised (will sleep for a 13 hour period but only actually get 8 hours of sleep in that time, as I’m waking up so much due to pain/not being able to breathe/nightmares). I’m very lucky if I manage mood than an hour of uninterrupted sleep a day. I don’t even remember what a sleeping pattern is.

I’ve managed to go on my computer twice, which is less than normal for me. There are some things I can only do on my computer so I’m frustrated but pushing myself results in being worse. I spent 15 minutes in my chair at the beginning of the month to have my sheet changed but haven’t been well enough to go back in it. That small amount of extra dizziness, pain and exhaustion makes such a difference in what I can do. Anxiety because the care agency still isn’t doing what I need them to doesn’t help.

Good news is Johan almost has a passport. He went for the interview on his birthday and it went well so he’s just waiting for it to arrive. It’s awesome seeing him so excited. He’s planning on going to Sweden in the summer to play games very fast and see friends who also like playing games very fast. When my body has been behaving enough I’ve been eating the goodies we were given for Christmas. Gingerbread penguins and posh fudge are very nice, and not too bad when they reappear multiple times 😛 I’ve also had McDonalds which I caused me less pain than most other foods, because my body is weird (only the lettuce caused issues).

I’ve got so many plans for when I next go on puter and go out. Taking my Deed Poll to the bank to get my name changed, and sending it to the people we’ve not managed to contact yet. Playing World of Warcraft. Talking to Sammie (I miss her the most when too ill to talk). Going for a meal with Johan for his birthday (he went out by himself but it’s not the same). Hopefully writing letters/emails, though they take more cognitive energy than I’ve had for a while. Having proper cuddles. I’m hoping this cold will be over soon, or at least I’ll have another slightly better day so I can manage something. I’m sure it’ll happen 🙂

I’ve been so grateful for my friends the last few weeks. Sending me penguins (especially for Penguin Awareness Day). Giving me (online) Squishes. Being understanding when I disappear from Twitter and Facebook for a bit. My cousin Elka linked me a penguin shirt that had a picture of a penguin made up of lots of little penguins, and I bought that and it arrived yesterday. I can’t wait to be well enough to get changed into it. It’s purple and long sleeved and awesome.

This ended up longer than I expected. Brain dumps are definitely the easiest form of communication. Time to go back to sleep and hopefully stay asleep this time. I can hope 🙂