Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Things and Stuff

Autism, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

So I had a relapse. Luckily a short one (only a couple of weeks) but it was a hard one. Lots of paralysis, loss of speech, extreme sensory sensitivities, difficulty chewing, moving and swallowing. Not fun.

I think I have to accept I’m not improving as fast as I hoped. Watching telly and playing Minecraft are too much for me at the moment. The second one hurts as it’s something I like to do with Sammie, but the movement makes me dizzy and more nauseous. I’ll have to think of something else we can play together, though for now we just talk while she plays games on her computer and I do whatever.

Urgent things on the to-do list are a hair wash and bedding change. I only want to do it with a carer I trust as I’m still not quite back to where I was. I really desperately want a shower but no hoist or shower chair makes that impossible. I had a bath last June in the care home but I really need something a bit more frequent than that. Bed baths just aren’t the same and I have a build up of dry skin on parts of my body again (there is a rule at the care agency that they’re allowed to apply makeup but not creams. I have no idea why or what the logic behind this is).

I admitted on Tumblr I’m not sure that I’m a cis (not trans) female. I know I’m not male but also don’t feel female, though do like being feminine sometimes. Since I learnt that gender isn’t a binary I realised that just because I’m not male it doesn’t automatically make me female. I think I need to do a bit of exploring in that area. I’m not particularly bothered about pronouns (though male ones do make me look at you weird) and Danni is pretty gender neutral anyway so there’s not much to change. Just something for me to sort out. I’m going with genderqueer or gender questioning for now. (My sexuality is still the same- I’m bisexual/pansexual, depending on definition, as I’m attracted to those of all genders and of no gender. Gender just isn’t a big thing to me.) Identity is important and interesting.

It’s funny but the thing I missed most during the relapse other than talking to Sammie was playing World of Warcraft. I missed the end of the Love is in the Air holiday (so didn’t get all the achievements I wanted) and most of the Lunar Festival. Patch 6.1 has come out and I’ve no idea what I’m doing. I’m still not well enough to do much in game so it’ll take me a bit to catch up I think.

We’re finally getting some of the old furniture out and next week we’re getting the daybed. Esther will have a proper bed to sleep on (we already have the mattress but the sofa is in the way). When I eventually get the hoist sorted I might be able to spend time in another room!

What has been keeping me sane the last few weeks are tablet games. I’m currently playing High School Story, Hollywood U, DragonVale, Kim Kardashian Hollywood (I feel like the only one still playing this), Sudoku and now AdVenture Capitalist. Simple games that require little brain power or movement but keep me entertained. I’m hoping as I get back to where I was I’ll be able to play more complicated ones. I’ve also restarted playing Draw Something as it’s fun.

Communication issues suck. We need a better system to get things done when I’m not well enough to do them (especially food shops). Brain power not good enough to manage to figure this out yet. I need an advocate for health/care stuff, but don’t know how to get one.

Grah. Sometimes I wish life were easier. At least I have people who love me and care about me. It helps a lot 🙂

Danni

Warning: Massive Grump Inside

Danni

I’m not having a good day. Woke up this morning and the slither of light between the curtain and the wall was too much even with sunglasses. Had a different carer who didn’t introduce herself which made me anxious, especially as I was non verbal and feeling horrendous. Johan fixed the light issue with my slanket and once my tramadol kicked in I was feeling a small bit better, but that was not a good start.

I’ve not been well enough to have someone in my room and I’ve been feeling lonely. Since typing was also hard I couldn’t even chat to someone online for more than a few minutes. I’ve spent most of the day lying there not doing anything because that was all I could do. Eventually I got my voice back and could tolerate my lamp on, but understanding speech and movement meant I had to kick Johan and Esther out.

Was a different carer this evening as well. She arrived early but luckily I was kinda expecting it so didn’t panic. I like her (I very rarely see this one) but talking to her for a few minutes made me feel horrendous and I had to kick her out after the pad change (I did so as politely as I could manage). I’ve been really emotional all day and it’s probably related to how bleh I’ve been.

I’m fed up. I’m fed up of being stuck in bed because the hoist isn’t installed yet. I’m fed up of not being told of changes with the carers so I end up panicking. I’m fed up of not being able to do things because I’m too ill. I’m fed up of not being able to fix things. I’m fed up of being so reliant on other people. I’m fed up of being so sensitive (to noise, touch, light, smell, movement…). I’m fed up of having muscles that get weaker the more I try to use them. I’m fed up of having joints that creak and crunch and keep trying to move out of position. I’m fed up of muscle spasms and jerkiness and getting stuck on one word that I keep repeating instead of saying what I want. I’m fed up of constant pain and weird sensations and being nauseous for years on end. I’m fed up of other people not doing what they’re meant to. I’m fed up of not being able to chase it up because I’m just too ill.

I just want to be better. Please?

Danni

Understanding Others

Autism, Danni, Real Life

Understanding other people is something I’ve had to work on for a long time, since I first realised that others weren’t just like me. It’s still something I struggle with, but so long as I’m aware of it I normally do okay.

My default position is that I am average human being (or penguin). I know that in reality I’m pretty far away from average, but it’s an automatic thing. The easiest part for me to understand is that others have different interests, as my own have changed as I’ve gone through life. When I was little I wasn’t obsessed with penguins, but wanted to learn everything about different subjects (such as living in Victorian times). I’m still interested in that type of history, but it’s no longer all consuming as it was then. It’s easy for me to understand that I might not like watching soaps but that others are, and my need to know everything means I’m genuinely interested in what others like and want to talk about, even if I’m not particularly interested in doing said thing (like watching soaps).

It gets more complicated when it comes to life experiences. My childhood was pretty different from the average British kid growing up in the 90s. Although I shared a lot of the same cultural heritage (watching most of the same TV shows and reading the same books), I had domestic violence, homelessness, living with alcoholic and mentally ill parents and other stuff that most people didn’t experience. Add to that being autistic so the way I think is different and my perceptions of life and events are processed differently and it’s no surprise I was seen as weird and odd, though I didn’t realise it until I was 8 (and didn’t know why until I was about 20). I’m still learning that average British person of my age probably knows of Noel’s House Party and Gladiators like I do, but doesn’t know the fear that you might have to leave home unexpectedly or that the scariest thing in the world is adults screaming at each other.

Once I’ve thought logically, I know think people are not like me unless they show they are. What I think or feel in a certain situation is probably going to be different from how I feel, and therefore respond. It’s a conscious process though, as by default I think they will be like me. Johan is very similar to me in personality and thinking style, so in most cases how I will think, feel or respond in a situation is often the same as how he’ll respond, and because I know him very well I also know when he’ll respond differently. My sister Meggy (who isn’t autistic) had a similar upbringing (though with more foster care than I had) but is closer to neurotypical than I am. We often respond in completely different ways to the same situation because of this, and that’s okay. It just means I find it harder to predict how she’s going to respond, though as she’s my sister and I know her pretty well I have a better idea than for a stranger. My other siblings (Becca and Martin) are somewhere in between, as is Sammie.

My autistic and neurodivergent friends are all over the place. Some are very similar to me in many ways, some are basically the complete opposite (they can be just as far away from average, but in the other direction- like I might respond to something by withdrawing into myself and becoming silent, but they’d respond by shouting and being loud). Many of my autistic friends are similar in some ways and different in others. I have friends who absolutely love and crave really loud music, whereas I cannot tolerate it. In general I do better understanding those whose neurotype is close to mine, which includes people with learning disabilities and things like dyslexia or ADHD as well as autism (and some autistic people I struggle with as theirs isn’t like mine). I do have neurotypical friends (and some of them aren’t disabled in other ways) and I have difficulty understanding them, but I’ve put extra effort into trying as they make up most of the population and I don’t want to get it wrong.

Difference is good and I love it, but it does make understanding how people will react to stuff difficult. On a more individual level, I also don’t always know what topics are appropriate for different people- I’m getting better at it but unless I’m told someone doesn’t want to talk about something then I’m not necessarily going to pick up on any non-verbal cues to shut up (though I can read autistic and other neurodivergent body language much better than neurotypical body language in general). Some of the difficulty is because of my childhood (what was normal for me wasn’t the norm for others) but most is just because of how I think differently. The difference in processing things is a factor as well- generally I pick up on sounds, smells and other sensory input much more than others, and it doesn’t take much for it to become overwhelming. That’s got worse since I became ill, but it was there beforehand as well. As a kid I couldn’t figure out why I was getting overwhelmed (so didn’t think to do things like cover my ears or wear sunglasses) and it made my tolerance for things much worse so I’d become aggressive (mostly verbally). I also would have massive meltdowns without knowing what they were. When I was a teen I stopped taking it out on others and turned it more on myself, and shutdowns became more common than the meltdowns did. I don’t hit people who touch me unexpectedly now, though still don’t like it. I’m more likely to bite myself when overwhelmed by panic or in overload.

One thing I wish though is that understanding other people wasn’t all placed on me. I’m expected to act as if I’m neurotypical, and many neurotypical people react badly if I don’t. I’m expected to just understand social situations and body language that isn’t natural to me, yet others aren’t expected to understand me, even if I try and help by explaining what I’m thinking or experiencing. My communication difficulties (which are mostly hidden as my speech is normally fluent) are dismissed as I can appear normal, and it makes life more difficult than it should be. It’s especially upsetting to me that some people who are paid to help me refuse to try and understand my needs, yet I’m expected to understand theirs. It’s scary and makes me afraid to even try. When they do make the effort it’s really good, I just wish it were the norm.

Danni

Silly Illness Stuff

Computers, Danni, M.E., Physical Disability, Real Life

There are parts of this illness that are really frustrating. Some are really obvious, like not being able to get out of bed, my hands not working properly and fainting when sitting up too much. Others are less so.

Yesterday I wanted to watch television. Overall I’ve been relatively stable the last few months, and I was getting a bit bored of my normal mobile games/reading stuff on my tablet/resting routine. So I watched two television shows. The first was Penguins on a Plane (which I recorded a few months ago) and the second was Supernanny US. Neither show had fast movement, loud explosions, or a complicated plot to keep track of.

Soon after finishing Supernanny, I felt horrendeous. I’d been sweating while watching telly (I also sweat when going on my computer or reading a book) and now I was alternating between too hot and too cold. My pain levels went through the roof and I was really close to throwing up. All because I watched a bit of television. Now we’re pretty good at getting my symptoms back under control so they’re bearable again, yet trying to do something as normal as watching television makes me more ill. It’s not fair.

I’m not sure what it is about watching television that my body doesn’t like. I can spend much more time on the computer than I can watching telly (though recently I’ve been going from fine to really ill in seconds when on my computer as well). If I knew what it was it would be easier to deal with. It’s frustrating.

Things have happened since my last post. Somehow I got my DLA renewed before it ran out (and we only got the form in two days before the end date). That was a massive relief. We finally got everything together to tell the housing benefit side of the council that Esther is here, so we’re no longer paying the bedroom tax (they probably didn’t complain about us taking so long because it increased our amount of benefit rather than reducing it).

I had an eye test (in bed) and it turns out I’m a lot more short sighted than I was. This brings my left eye closer to normal as it’s my long sighted eye, and makes my right eye worse. Overall my right eye is my better eye (closest to normal) but it’s also my weakest. That surprised the optician. He also said he doesn’t get many people who can read the bottom row as most people he sees are older. I’m getting my new glasses (and sunglasses) tomorrow so I’m hoping they’ll help with the double vision and stuff. Maybe it’ll make watching telly easier as well?

I saw the CFS team but there’s not much they can do until I have my hoist. They’ve written a letter to the OT in charge of it asking why he’s not sorted it yet (they phoned him last year and he said he’d speak to us before Christmas). I wanna get out of bed and all that’s stopping me now is not being able to transfer safely. I also want a shower. Some stuff is the fault of the illness, but others is people not doing what they said they’d do.

Danni

Random Sleepy Thoughts

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

I got woken up around 1am by the neighbours playing music. They finally stopped about 3am but I’ve had to take cyclizine for the nausea it caused and I’m now sleepy but not quite enough to actually sleep.

DLA form was sent last week. It’s been received but as my end date was the 11th January I’m expecting to go without for a bit.

Johan’s Carer’s Allowance was also meant to stop (as it’s tied to the DLA claim but unlike DLA is paid in advance) yet he got the full amount this morning. Cue confusion. I guess we’ll see how much DLA I get on Tuesday (it should be slightly lower).

I’ve been spending far too many hours making spreadsheets to help me organise what I’m doing in various tablet games. They’re mostly done, though I need to remember one formula I’ve forgotten and Google isn’t telling me. I’m sure it’ll come back to me.

In Dragonvale I’m trying to breed a Panlong Dragon while it’s available. There’s a chance I’ve got it as the breeding time is long enough but there are other cool dragons it can be. The spreadsheet helps me work out which habitats I need and should put dragons into, which ones I should use for breeding and helps me keep track of what dragons I already have.

In High School Story I’m trying to party for a Country female. I keep getting Country males, Slacker males and Musician males. The spreadsheet helps me track which classmate types I’ve already got, what Hangouts I need and the party times of each type. I’m also completing as meant quests as I can, concentrating on the main storyline first. It would be nice if it didn’t conform to the gender binary but I have a few classmates I head canon as trans, genderless or androgynous.

In Hollywood U I’ve finished all the current quests and dates. I’m currently partying for a Composer male, but keep getting Composer females. The spreadsheet is basically the same as the High School Story one. I’m also trying to level a male and female of each type to level 10, so it’s easier for quests as they come along. Once I’ve done that it’ll be levelling any remaining students to level 10 and the main characters to at least level 20. As I’ve a lot less students than in High School Story I only have one trans woman so far.

I’m still playing Kim Kardashian Hollywood. I nearly quit but they came out with new quests. This one doesn’t require any brain power or spreadsheets, and I just play it to see how the storyline is going.

I’ve been able to get on my computer quite a bit recently, though mostly at night so not when Sammie has been around much (though I did get to speak to her yesterday which was awesome). I’ve mostly been working on the spreadsheets but also played a bit of World of Warcraft. I did the first part of LFR on Danni yesterday, which was easy. I’m still too scared to do Heroic 5 man dungeons though, as I’ll be the only healer.

The last few days I’ve managed to watch a few Doctor Who episodes. The latest one was Time Travel Heist. It was good, and I’m liking Peter Calpaldi as The Doctor though not how he’s mean to Clara.

Now I’m sleepy tired so it’s time for me to come off my tablet and hopefully not have any nightmares. Mine have been including my pain in them and nightmares about being tortured aren’t fun.