Danni

Blogging Against Disablism Day: Internalised Disablism

Autism, Blogging Against Disablism Day, Danni, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

Blogging Against Disablism(This blog post is part of Blogging Against Disablism Day 2014. Is is hosted at http://tinyurl.com/BADday2014)

One of the hardest parts of disablism (or ableism) to deal with is how it invades your thoughts. All those insults and comments that have been said about or to me stick in my brain, and come out when my disabilities affect me. The thoughts that I’m not really disabled, that I’m just lazy or stupid or selfish or putting it on, things that have all been said to me by people aware of my disabilities.

I know logically that being disabled does not make me a bad person. Having impairments and needing help and support has no impact on my worth. Yet years of bullying, often based around my difficulties, mean I find it hard to accept sometimes. This isn’t helped by the current treatment of disabled and vulnerable people in the press, or how a lot of people talk about disabled people.

Recently on the news there was a story of a mother murdering her autistic son and then killing herself. Most of the articles were sympathetic to the mother, and went on about how difficult her son was to deal with. The fact a child was murdered because of who he was didn’t seem to matter. As an autistic person, it scares me, and it feeds into the thoughts that I’m not worth it. He deserved to live, and there is no justification for his murder.

Johan often tells me off for apologising when I ask him to help me. I can’t stop doing it though- years of being told I didn’t deserve it mean I feel guilty when asking for help, even though logically I know that I need it and Johan is quite happy to help me. I even tried to justify the neglect I suffered in the care homes for the same reason. If it had happened to anyone else I’d be outraged and want to do what I could to fix it, but because it was me and because I only deserved bad things because I’m not that ill/putting it on/it’s all in my head I felt guilty for even mentioning it.

Before my ME got bad there was no real external sign I was disabled, though I was odd enough to be called names/beaten up/literally trodden on. I was blamed for my difficulties, often by the people who should have been supporting me. The result was years of depression, and even that came with it’s own disablism. Though I’m no longer depressed, I still have times where I think I’m lesser because of my disabilities. I know I’m not the only disabled person who has this.

All people matter. Everyone should get the help they need, regardless of who they are. If someone can’t do something, that should be accepted and they shouldn’t be treated badly because of it. They also shouldn’t be denied the chance to do what they are capable of. No matter what people think, this is true. Now I just need to convince my brain of this.

Danni

Hope

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

As I lie here in my bed, only moving one hand slightly to type on my tablet, I don’t feel completely horrendous. I’m nauseous, in pain, and random muscles are spasming, but I feel like I could get out of bed and into my wheelchair with help. As soon as I move (to roll over, or reach for something, or have my pad changed) I’m reminded why I’ve been in bed over a year with only a few short periods in my chair. Dizziness makes my vision more blurry. My heart does funky dances (races or beats in weird ways, while attempting to escape my chest). Breathing becomes hard. Pain shoots around my body. I get more spasms. I feel incredibly ill.

If I’m lucky the movement induced blehness eases off after a few minutes and I can breathe and think again. Using the bed to move me helps, so long as I don’t attempt to sit too high or too quickly. Most of the time it happens immediately so I know to stop as soon as I can, but other times it takes a few minutes so I’m fooled into thinking I’ve got away with it. It sucks, as it means I can’t move as much as I want to, and moving when I need to (remaining completely still risks bedsores and stuff) is horrible.

If I can I try and concentrate on anything but how I’m feeling when I move. If someone is in here, I’ll try and talk to them (if able to speak) or concentrate on them. When alone, I concentrate on the task and why I’m doing it (such as how my hip will feel better once I’m on my other side). I try and move as quickly as I’m able so I don’t get stuck, though I’m limited by my body in how quickly I can go now.

Hugs are the thing I miss most. Being touched is incredibly painful now, and can cause the same stuff as moving does. If it were just pain I could cope, I’m used to pain. But hugs are so overwhelming that they cause post exertional malaise, where I get worse symptoms and my body becomes weaker a day or two after the event. There are times where the emotional need for a hug makes it worth how ill it makes me, but since if I get much worse I become paralysed and unable to swallow it’s not something I can risk too often.

I’m grateful I’m not as ill as I could be. I have handholds with Johan as they don’t affect me as much. I can tolerate enough light and sound to be able to go on my computer and play games. I can concentrate enough to read and communicate. Most days I can manage something solid to eat. Overall, I’m slowly getting a bit stronger. I just need to remember not to push it to the point of relapse and pray for more little successes.

There are people with ME (and other conditions) who are more ill than me, who would love to be able to do what I can. Just as I’d love to be able to get into my wheelchair or have a hug without payback. I sometimes forget how ill I still am as I compare it to how I was at my worst: paralysed, unable to tolerate any input, and barely conscious. But I’m lucky as I have support and hope. The hoist should get me out of bed. A And I’m going to get better, somehow.

Danni

Diablo 3

Autism, Computers, Danni, Diablo 3, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

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 🙂

Danni

Autism Functioning Levels

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

I woke up earlier this week having been dreaming about an argument/discussion I’d had on one of the ME groups on Facebook I’m a part of, and I’ve been meaning to blog about it for a while so now is a good time. Someone posted an image on there which was about invisible illnesses, and included autism in the list. I mentioned how calling autism an illness annoys me (it does) and it turned into an argument where vaccines cause autism, Andrew Wakefield is a hero and I don’t understand because I’m too high functioning.

I don’t understand autism functioning levels. The best explanation I’ve seen is that high functioning means your difficulties get ignored, and low functioning means your strengths get ignored. When it comes to defining it, no-one can give a definitive answer. Some say it’s based on speech, others on ability to perform self care tasks. others on supposed intelligence. When done over the internet, people who can communicate online are normally “diagnosed” as high functioning.

Autism does cause me difficulties, even though I don’t have any associated learning disabilities or epilepsy. Most of it is stuff that no-one really gets to see unless they spend a lot of time with me (or happen to be around at the wrong time). I have meltdowns. During them, I have self harmed (not consciously- it just happens in an attempt to get the pain to stop). I had meltdowns in public until I became too ill to go out.

Meltdowns are scary. They happen when I’m overloaded, and since the world isn’t designed for autistic people, that used to happen an awful lot. As a teenager I’d be verbally aggressive and if anyone tried to touch me, would lash out. Sometimes I’d run away from the situation. As I got older and learnt to internalise it more, it would appear like a panic attack, and I’d bite my hand or scratch my skin or whack my head off the closest wall. I’d hum or scream to try and drown stuff out. Crying and trying anything to make it stop.

Other times I’d shut down instead. Less dramatic looking but just as terrifying to me. The outside world would be distant and feel wrong. I’d be unable to process anything and unable to think. Often I’d be very still (unusual for me – I was in constant motion normally, even if it was just my fingers or feet that were moving). I’d be unable to communicate no matter how much I wanted to. Someone who saw this told me it looked like I wasn’t there, and it scared them because normally I’d respond in some way, even if non verbally.

I’ve been told my meltdowns look like temper tantrums (I was told they were temper tantrums until I found out I was autistic). They scared me because I couldn’t control them. I didn’t want to be acting that way, but I didn’t have conscious control of my body. Both are caused by overload, and it’s like a computer crashing (one where it starts doing weird stuff, the other where it freezes).

I learnt to speak on time. Yet it was never completely reliable for me. I was called quiet or shy as there were times I just couldn’t speak (though it wasn’t noticed as such as when I could I spoke older than I was). The more expectations that were placed on me, the worse my speech reliability got as I had to use the brain power for other stuff. I was often punished for not responding or responding inappropriately and I hated myself as I couldn’t understand why it was so hard.

One area I did excel was academics. This hid a lot of my difficulties as I did well in school. Until I was 16 I had a photographic memory for text, which made learning very easy. I couldn’t manage homework for various reasons but on tests and exams I could perform. Teachers noticed I was clumsy, over sensitive, and that I struggled socially (especially after age 8, which is when my differences started becoming obvious to my peers) yet it was expected that as I was intelligent I’d just learn to be “normal”. It never happened. If I’d not been managing academically I suspect my other difficulties would have been picked up on a lot earlier.

One of the big reasons given to call someone low functioning is not managing toileting independently. I don’t understand the obsession with it. As far as I’m aware I was toilet trained at a normal age, yet as a teenager I started having accidents as I wouldn’t notice I needed the toilet until it was too late (would be called regression by some people). Eventually it was happening frequently enough that I carried spare clothes and a clean up kit whenever I went very far, and kept a spare change of clothes in my locker at college. I’m not surprised that it’s one area the ME made worse (as I have less brain processes to deal with recognising when I need to go, along with now not having control which is probably neurological) so I now wear incontinence pads, which is nowhere near the big deal many people make it out to be. Nor is needing someone else to change them because I can’t do it myself.

I know I’m more able to mimic neurotypical behaviour than some other autistic people, and that (along with being able to type well, and sometimes speak well) is why I’m classed as high functioning. Yet at age 20 I was nearly placed in a care home because I couldn’t live independently (still can’t and even without ME wouldn’t be able to) and I’ve been treated like I couldn’t think for myself when unable to communicate verbally (something that happens to a lot of people with autism and learning disabilities, and is always wrong). The local police thought I should be under a guardianship order due to how I appeared in public when alone. That’s not normally what is associated with high functioning.

It’s mostly luck that I managed to avoid the care home and probably a lifetime of being institutionalised. My social worker found some supported accommodation for me, and my friend Colin provided me with support at night when the workers weren’t there. Vicky moved in with me when I moved out to my own place and we helped each other. Johan moved in with me so that I wouldn’t have to go back into supported accommodation (or a care home) after Vicky moved out and I wasn’t able to even keep myself fed adequately. Louise at college sorted out loads so that paperwork I couldn’t manage got done (along with a ton of other stuff). My mental health problems were partially caused by not being able to cope and being diagnosed as autistic was the start of learning about myself and my depression getting better. Knowing why I struggled helped me to cope with it and either learn ways around my difficulties or know when to accept help to deal with them.

Having severe ME has given me some insight into what it’s like to be more severely disabled, outside of during overload. I’m not always able to understand speech. I’m not always able to communicate (at all when I’m paralysed). It’s incredibly frustrating. Even more frustrating is when my communication isn’t recognised, and at its worst has meant my basic needs weren’t met (I went 18 hours without going to the toilet, having needed medication or having a drink because the care home I was in wouldn’t listen to me if I couldn’t speak, despite being told it happens). I can’t always get my body to do what I want it to do (caused by both autism and ME) and when unable to communicate in any other way, it comes out in violence. Over the years I’ve both gained skills and lost them. Now I rely on other people for pretty much everything, though I’m grateful I can usually type. The times I’ve been treated as unable to understand or think for myself I’ve ended up overloaded, and if I were treated like that all the time instead of occasionally I wouldn’t be able to show what I could do, or learn new skills. I imagine that’s the case for at least some autistic people who are labelled low functioning. Being treated like a capable human being, who deserves the support I need, lets me be the best Danni I can be.

At times my difficulties have been dismissed as it’s assumed that because I can do one thing, I can do something else. At others it’s been assumed that because I can’t do something, I can’t do things I can do. To me it’s normal for people to assume when I can’t speak that I can’t understand. It’s wrong but it happens a lot. I want everyone to get the support they need to be the best they can be, whether that’s social support from friends, help with personal care tasks from carers, or anything else. Every person deserves to be treated as human, no matter what.

(I’m sorry if this is confusing or muddled. I’ve been trying to write it for several days and as most of it has been typed on my tablet, I couldn’t see much of what I’d written. My brain fog has been worse than normal so typing which is normally one of my strengths has been hard.)

Danni

Dopey Danni

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

My blog post to-do list is growing. One of them I’ve made a start on, but I’m really struggling to write it. Most of that is because I’m now taking the domperidone three times a day and it makes me really dopey. I can cope with it- it’s not the worst side effect I’ve had to deal with by a long stretch, but it does mean I have very little brain power for things like writing blog posts that aren’t just a stream of consciousness.

The dopeyness has meant I’ve not been up to much. I’ve been on my computer everyday but I’ve not even logged into World of Warcraft for a bit as it’s just too much. I’ve spent a lot of time watching kittehs and some watching penguins. I have caught up with Total Biscuit’s Hearthstone videos finally, which is something. I love his gimmick decks as they’re really entertaining, and even if my speech processing is poor (though TB’s voice is easier than most for me to understand) I can at least see what’s happening for myself.

I’ve had no speech myself for a few days. It’s starting to get annoying. The new AAC app is really helping with that, though when I’m on my computer it’s a little awkward to use as I don’t have speakers connected to it at the moment. What I really need to do is get the front headphone jack hooked up so I can plug my headphones in there, my speakers hooked up again and then figure out having the different programs going out of different audio outputs. There’s got to be an easy way to do it but my brain is too bleh to figure it out (and I don’t have the speakers in here at the moment).

I’ve started using HabitRPG. It basically is a to-do list turned into a game. Being stuck in bed I can’t add the usual stuff to it (cleaning, going out, trying to exercise more) so I’ve had to be a bit creative in adding my habits, dailies and to-dos. While I’m still getting used to it the domperidone is down as a habit to work on, but once I’m taking it reliably I’ll be moving it over as a daily. My to-dos have various things on it, including the blog posts I want to write. Some of them require help though, like getting my penguin pictures on the wall and contacting social services about the hoist. It’s fun and I’m part of the Nerdfighters guild which I got talking about penguins 😀

I accidentally wiped the data partition on my tablet while trying to update the Google Apps on it (I have them integrated into the ROM). Since I’d done that and Paranoid Android is currently in the process of reworking a lot of its features, I took the opportunity to try a different ROM out. I’m now on PAC-man, which I tried before but had issues with at the time. This time it seems to be working okay despite me being on the nightlies, and I really like some of the extra features. I also changed my font to Comic which made Johan facepalm but reminds me of Doge so I’m happy.

I can’t remember if I mentioned it here, but I discovered Johan had set the spam filter on our email server to automatically reject spam, and that it was definitely having some false positives of my email. Included in that was an email from EE, so there’s a good chance they actually responded to my email to them in December and it got eaten. Because of this, I’ve moved over to Google Apps for my email. Right now I’m importing all my emails from my other GMail account so I can have the few I still need to reply to in the right place. Since I basically archived all my emails from 2009 it’s going to take a while 😛 I’m hoping it’ll be done by tomorrow. As I still have them all on the other account, I’ll be deleting all but the recent ones to try and keep this one a bit clearer. I wish there was an easy way to just import the recent emails, but forwarding screws up the replying (I tried) and there’s no date selection tool that I found. Some of the emails I’ve seen are from when I was living alone, and it really reminded me about how badly that went. I know I can’t manage living independently, but it feels weird to see emails about how I would forget to eat and stuff. Not that it’s much improved now, but at least with the two of us one of us has a chance to remember.

Since I’m going to be paying for Google Apps (in a free trial at the moment) I want to take advantage of things like the custom domains. Johan couldn’t understand why I wanted them, but to me it’s obvious. As he controls the DNS at the moment and I don’t have the details I have to wait for him to do it and I’m quite impatient as I can’t click the button until the DNS is changed. I have changed the logo to a purple penguin one which makes me happy though 🙂

Primrose, my new microwaveable penguin, is fitting in well. She’s not quite as silly as the other penguins but I’m sure she’ll learn. She was disapproving of me changing my font on my tablet to Comic so I need to give her an education on Doge and similar things. She does help me with pain relief along with Penguin, and Penny and Po keep me company while they’re in the kitchen. Penelope wants a wheelchair so I am needing to find a penguin sized one (she thinks they’re cool).

Johan went out on Saturday to see some friends we’d made on Twitter who happen to be local. From what he told me it went well and he brought me back cake, which was amazing. Since Johan wasn’t too far away I was okay with being left, as he had money for a taxi if an emergency did crop up. With my carer coming though it was fine. He has discovered that if he uses his inhaler he can manage around cats much better. Turns out treating asthma helps 😉 I’m trying to convince him to take his preventative inhaler twice a day as he’s meant to, so hopefully he will get less symptoms as that builds up in his system.

I’m hoping the dopeyness eases off as I get used to the new medication. Unfortunately it’s not having a great job dealing with my nausea so I’m sometimes having to take cyclizine as well, which really doesn’t help. It is making my digestive system more noisy than normal so hopefully it means it’s working to try and get things moving out of my stomach. Otherwise I’m going to be lying here pretty much useless for a while, and I don’t want that. I need to get into Minecraft soon to figure out getting to the moon, but that requires brain power I don’t have right now. Hopefully soon 🙂