Author: Danni

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

Autistics Speaking Day: How Autism Affects Me Now

Autism, Danni, Important Stuff, Real Life

It’s the 1st November, which means it’s Autistics Speaking Day again. This started last year as a response to Communication Shutdown, which luckily isn’t being repeated again. My post from last year is here, and the website is here.

I was diagnosed with Asperger’s Syndrome when I was 21. Since then I’ve learnt lots of ways to deal with some of the more difficult parts of it, mostly thanks to Interface (the autism unit at South Tyneside College). This doesn’t mean I’m “cured”, though. I was born autistic, and will be so the rest of my life. I still have a lot of difficulties, and the M.E. also makes it worse. Here’s how it still affects me.

Over-sensitivity to noise, light, smell and touch.

That’s all the senses except taste, where I may be over-sensitive a bit (I can’t cope with spicy foods, and much prefer plain foods) but it’s a lot easier to control. My reactions to these are a bit less extreme than they were, but it’s an area where M.E. makes things worse. I normally wear sunglasses when I’m outdoors, I have ear defenders to wear when it’s noisy (which I often have to wear if I go out in public because of the noise of traffic, people and things) and sometimes listen to music to drown out other noises (often with the ear defenders). M.E. in itself causes over-sensitivity, so for me it just means everything feels a hundred times worse when I’m having a bad day. On those bad days, I lie in bed with an eye mask and ear defenders on (because the normal noises around me and all light is too much) and no-one can touch me as even my pyjamas and bedclothes feel like torture. As for touch, I do not like people touching me, but as I’m unable to do things for myself I have to allow it. I am getting better at coping with it when it’s not a bad day, and even let a stranger put make-up on my face a while ago. I also can’t cope with strong smells as they make me feel like I can’t breathe, and some of them make me vomit.

Problems with communication.

Communicating with people uses a lot of energy. It takes energy to listen to people, process what they’re saying, and then respond in a way that they can understand. This is another area that M.E. makes more difficult, as I can no longer just throw more energy into communicating. I am verbal most of the time, but I have more times of being non-verbal than I used to, since I became more ill. I become non-verbal when I’m overwhelmed. With autism it’s from sensory overload, and the M.E. causes it when I’m overloaded because of pain. This can cause problems- when I was in a care home earlier this year I was unable to answer open questions, became non-verbal and wasn’t able to communicate that I needed a drink or the toilet so went without for 19 hours. We have similar problems with the home carers (especially since Johan has the same problem answering open questions) but most at least some of the carers are learning to work around it.

I’m also unable to use the telephone as I struggle to hear what the other person is saying without being able to lip read, have to respond almost instantaneously, and it makes me very anxious. A lot of places still don’t allow communication by email, so I’m reliant on my husband to phone for me. My favourite so far is the National Autistic Society phoning me twice (once on my landline, once on my mobile) and insisting on talking to me. When my husband told them I couldn’t talk on the phone, they asked why, then one of them didn’t understand when my husband said it was due to my autism. They said they were going to write to me about what it was, but so far I’ve not received anything, and it was at least a month ago.

Meltdowns and shutdowns.

This is hard for me to talk about, as I don’t really want other people to know what I’m like at my worst, but since they’ve been happening more than normal recently I should probably mention them. A meltdown is similar to a panic attack in appearance (I also experience panic attacks) but it’s not the same inside. With a meltdown I lose complete control. I say my brain explodes, as that’s how it feels. I’m so overwhelmed by all sensory input, all my internal feelings, all emotions that I just can’t cope. I may scream, may hit, bite or scratch myself (I keep my nails short after scarring myself during a meltdown), and there’s nothing anyone can do to stop it other than wait it out. Unlike a panic attack, I don’t have enough control to end it as I can’t think at all, it’s just a massive amount of badness in my brain. Afterwards I’m completely exhausted, and need to sleep (this was true even before the M.E.). They used to be very rare, happening at most once a year, but they’ve happened a few times this year because of issues with carers and things.

A shutdown has the same brain explodiness, but instead of it being expressed outwards I just stop doing anything. I don’t move, don’t respond to anything, can’t hear, can’t think. I will remain in the same position for however long it lasts, which can be hours. Again, it’s exhausting and I’ll need to sleep when it’s over.

Anxiety and panic attacks.

Anxiety is common in autistic people, and I’m no exception. I do not like change, and though I don’t need a set routine as such, if there is a timetable then I don’t deal well with it being changed. I also become anxious if there’s too much sensory input, as my brain can’t process it properly. An interesting cause of anxiety is related to the dislike of change- I can’t cope if my carers arrive early (though can if they come late). This is because I have to mentally prepare for them invading my personal space, expecting me to communicate with them and possibly touching me. This takes time, so if they come early I’m not prepared and panic. I also panic if my anxiety builds up and I can’t get rid of it, or if there’s a sudden loud noise or someone touches me unexpectedly (especially if already anxious). When I panic I can normally calm myself down pretty quickly if the trigger is removed, but it is very tiring. If people talk to me, touch me or tell me to breathe (for some reason, trying to control my breathing causes me to become very anxious and panicky) then it will last longer. I used to rock, pace or flap to reduce my anxiety, but my M.E. means they’re no longer an option. Most of the normal suggestions (breathing, relaxation exercises, and things) don’t work or make things worse, but distraction sometimes work so I may listen to music (which also has the advantage of blocking out noise).

Lack of body awareness.

This one didn’t used to be a big problem, but since I became ill it’s more of an issue. Most of the time, I have no real awareness of my body. This means I’m not sure where it is in space, what it’s doing, and how it’s feeling. The reason this is a problem is because often I’m in pain (M.E. causes muscle and joint pain, headaches, sore throat and other pain issues) but I’m not aware of it, or if I’m aware of it I can’t tell where it is. I get asked a lot by doctors where the pain is, and it can take a long time for me to figure this out, if I ever do. The doctors don’t really understand how someone can be in pain, but not aware of it or where it is. Luckily for me, Johan is pretty good at telling me when I’m in pain (I tend to get crabby with him) so I can take painkillers.

———–

There are probably other areas where autism affects me, but brain fog means I can’t think of them right now. You may notice that social interaction isn’t there. That’s because it’s not a problem for me at the moment, as I’m pretty much housebound so the only people I really interact with in person (other than my husband Johan) now are doctors and carers, and I have scripts to deal with those situations. Johan understands me very well- he knows if I can’t speak I will type and use gestures to communicate, knows what to do if I’m panicky, in pain, overwhelmed and things. He also has some of the same issues I do, and is currently being assessed for autism.

There are many positives to being autistic, and I wouldn’t want to not be, as it’s a part of who I am. But just because I am able to type well, speak (most of the time) and before getting M.E. able to live pretty independently it doesn’t mean I don’t have my problems due to it, and I still need help to deal with them. I’m getting there though 🙂

Danni

Looking Out Of The Window

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

The update post!

November (tomorrow since it’s Monday already) is NaBloPoMo. I am planning on taking part this year, even if I only manage to post a video or a picture everyday. It should give me something to do 🙂

Blizzcon was awesome, though I did get payback from watching a lot of television (live stream). I’m very excited about Mists of Pandaland, can’t wait to be a Pandaman Monk and also will be buying the collector’s edition of Diablo 3. I’ve also subscribed to the annual pass for WoW as I should be continuing to play, and I pay every 6 months anyhow.

I’ve spent a lot of time in bed as normal. On Thursday I went to my hospital appointment, where I didn’t see my consultant 🙁 but did see a member of his team. She’s going to write to my GP I think, and doesn’t want me back until I improve, because going there made me very ill. She is happy with this because I have such a decent GP, and there’s not much they can do there that my GP can’t anyway. If I improve enough, I’ll be going back in about 3 months.

I have given up keeping the activity diary for a few days. It’s been pretty freeing, actually :p The doctor at the hospital wants Johan to call my physiotherapist about me not being well enough to travel to the CFS clinic, to see if they can see me at home or something. I haven’t been able to figure out baselines at all, though I do know roughly how much I can do on a good day and a bad day. The problem is on a bad day, I can do pretty much nothing, and spend most of the day with my eye mask and ear defenders on, maybe occasionally taking them off to stare at Twitter. I will work on it this week, as I’m meant to be seeing them on Thursday. I will also start filling in the activity diary again.

We’ve also rearranged the living room. We originally shoved the spare bed in the corner after I’d been sleeping on the sofa for a couple of weeks because I was unable to get upstairs, but I was hoping to improve so it was only meant to be a temporary solution. As it is, I’ve got worse instead of better, and acquired an awful lot of disability equipment that needs to be in here, so we’ve moved things about. We’ve removed one bookcase completely (did have Star Trek videos and DVDs on- I’m not well enough to watch them), put another behind the door, moved my bed where my computer desk was and that desk where my bed was, and moved the other computer desk around so there’s room at the bottom of the bed for stuff like the commode. I’ve also swapped computer desks with Johan, so his is near the door and mine is near my bed so I don’t have to crawl to get there anymore. We’ve still got the sofa to sort out (it’s been moved slightly for the computer desk, but otherwise is pretty much in the same place- but it’s been turned into the dumping ground for everything while we’re moving stuff) and I want my small bookcase from upstairs to put next to my bed as a table, but it’s getting there. I’ll take and post photos when we’re done, which should be tomorrow.

The main advantage of moving everything is that I’m no longer near the living room door, the wall next to the pub and above the gas pipe, so I should be disturbed a lot less. It used to be when I was asleep that I was the first thing you’d see coming into the living room, so people mistook it for a bedroom :p Now if I’m not well, I’m in the corner so people coming in will disturb me less. Also not being on top of the gas pipe means not waking up to vibrations whenever a carer runs the hot water to do the dishes or similar :p I can also see out of the window, so I’ve been able to see some awesome sunsets.

My plan for today is to wake up and get up about 10am, to try and sort out my sleeping pattern. I’m guessing it will make me feel pretty rough for a bit, as I’ll be tired, but trying to go to sleep earlier hasn’t worked yet, so I’m going to try waking up earlier instead. Johan doesn’t think it’ll work but we’ll see. Johan needs to call the physiotherapist about Thursday, and it’s Halloween so I’ll be asking him to see if he can find some face paints (I want to be a zombie :p) and we’ll be carving the pumpkin I bought last week. I’m also thinking of asking him to find some halloween treats in the shops, and maybe try watching a scary film I’ve seen before (though that may be a bit optimistic).

We also both need to make GP appointments, but that’s not overly urgent. I want to see if there’s anything he can suggest for the muscle spasms, as them keeping me awake is what made my sleeping pattern so bad to begin with. They’re also quite scary as if I’m lying on my back they can launch me off the bed. Johan and I think we may have to consider something to stop me ending up on the floor if that happens, though I don’t really want to feel like I’m in a cot. We’ll see.

Danni

Being Too Tired To Care

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

(An update post is coming soon(tm).)

I used to have an interest in many different areas. Human rights, discrimination, politics, free software, and other stuff- things I used to try and keep up with and trying to help reduce world suck in whatever way I could. Recently, I’ve not been able to do this.

The last time I took a proper interest in something like this was when Troy Davis was executed. I stayed up all night praying and hoping for the best, then praying and being upset when the worst happened. It completely exhausted me, and made me more ill. Since then, I’ve had to be careful not to allow myself to get caught up in injustices in the world, as the emotional energy I would spend on it is too much for my body to handle. I’ve been feeling really guilty about this, as basically I’m too tired to care.

The hardest hit march was last week. I was hoping to go, but I was too ill to do so. I sent one message on Twitter, and did nothing else. Well, I read the Twitter messages about it, but I watched no videos, read no blogs I wouldn’t have anyway, didn’t contact my MP or similar. I wanted to do something for the day a month ago, but I was just too tired too really care about it on the day. And this was for something that could affect me directly in the near future, as I’m currently living on disability benefits.

For other areas, I’ve been doing even less. I’ve even been ignoring certain Twitter messages from friends, as I don’t really want to know what bad stuff is going on. Emotional stuff for me is probably more draining than any other type of activity (mental or physical) though is harder for others to see as I don’t show my emotions that well. My carers and Johan may yell at me for crawling across the living room, as it’s using too much energy and will make me worse, but they can’t see if I get upset that someone’s going to become homeless due to ATOS, or has been killed, yet that will make me worse than the crawling.

I admire those who are able to protest and do stuff, especially those who are also disabled. I wish I could join you, but right now I’m just too tired to care about any cause. 

Danni

Excited for Blizzcon

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

Had a rough time recently, but slowly coming out of it. The nausea is nowhere near as bad now, and I’m back to eating mostly normally. It was probably made worse by overdoing it (going to the MetroCentre then the doctors at the beginning of last week) and since I’ve not been out since then and resting and taking it easy, it’s started to behave.

I do have a cold, which is trying to make me feel miserable, but ibuprofen is taking care of that. On that subject, why does children’s Nurofen taste disgusting (it’s a horrible orange flavour) while Calpol tastes nice? I’d have Calpol instead but paracetamol gives me a horrendous headache. I also get the Nurofen on precription, which since I don’t pay for them makes it cheaper.

I can manage about 3 1 hour sessions on my computer without getting any extra symptoms or getting any payback. I think I’ve found my baseline for that activity, anyway 🙂 Now to work on all the others. I have found talking to my social worker is exhausting and gives payback, but that’s a necessary activity, unfortunately 🙁

I’m getting a bath lift! 😀 The occupational therapist came out today, and didn’t even need me to get out of bed :p He asked Johan some questions about me (even if he did add nearly a stone to my weight. Humph.) and has recommended a reclining bath lift. He said that normally they’d start with a bath seat, but since my main problem now is that I have very little upper body strength (or lower body strength) the bath lift is most suitable. I am looking forward to having baths again, without having to fall in and risk getting stuck. They’re awesome for pain relief, as well.

Blizzcon is on Friday and Saturday, and I have a virtual pass so I’m looking forward to watching that. I get access to the videos for a bit after they’ve been streamed, so if I miss something because I’m ill I can watch it when I’m able to. I want to see what the next expansion is for World of Warcraft, and the Foo Fighters are performing 🙂

I am starting to adapt to being this ill. It’s hard, but I’m learning to ask for things more so I can conserve my energy for more important things. I’m also asking Johan to heat up my wheat bag and penguin to try and ease the pain when it’s only in one limb, as heat does help and means needing to take less painkillers, which is always good.

We’ve had to turn the heating on. The last couple of days have been freezing. We turn it off a couple of hours before the pizza shop opens, and turn it back on again a couple of hours after it shuts. Luckily we can save money during the period the pizza shop provides our heat. I’ve also noticed I’m more sensitive to the cold this year- this is probably just because I’m a lot more ill. Still, my DLA is to cover disability related expenses and extra heating bills is one of them.

My doctor has sent off a letter to the council about moving to more suitable housing, I think. At least, he’s sent back the letter I gave him telling me I needed the doctor to write to them.

I’m also sorting out direct payments. Currently looking for someone to work as my personal assistant twice a day. Unfortunately I don’t know anyone immediately who can do it, but I’ve asked on Facebook and will also be advertising in the Job Centre and stuff. This is something that living so far out will probably make harder really though, as it’ll only be a few hours a week and unless the person lives in the area there will be quite a travel to get here. I’m hopeful though, and we can be relatively flexible regarding hours if a college or university student wants to do it. The paperwork currently looks like a nightmare, but I think that’s just because I’ve been so ill the last week or two. It will probably be less scary when I look at it when my brain is partially functioning.

Long blogpost has turned out long. Johan is amazingly still awake- I think he’s getting ready for Blizzcon. Lovely Icelandic carer is due in about 6 hours. That will be interesting if we’ve both not really slept (I’m currently sleeping for about 9 hours in two blocks of between 4-5 hours each, one in the morning and one in the afternoon/evening). Still, I’m not too concerned about it as I am sleeping enough, and if it becomes too troublesome I may ask for a very short course of sleeping tablets just to reset it.

Danni

Staying Positive

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

At the moment, I am a generally positive person. This may not come across much in my blog posts, mostly because I’m using them to record how my M.E. is treating me, and at the moment it’s making me rather ill. I have been talking to friends, and one said she felt guilty as she’s improving while I’ve been getting worse. The last thing I want is to make people feel guilty about getting better, just because I’m not. So here’s a list of the positive things in my life at the moment.

  • I’ve not been depressed since early 2010. This is the big one- although I do get periods of low mood, and other negative emotions such as anger and things, they are always within the bounds of normal (whatever normal is) and I can normally cheer myself up. Also, if I’m having a particularly bad day, painkillers normally fix it as it’s normally caused by pain.

  • Despite being very ill, I’m not completely bedbound. Most days I can get out of bed, even if it’s just to use the commode or spend 10 minutes on my computer at the other side of the room. It’s only on very bad days when I can’t manage getting out of bed at all, and faint if I try and use the commode.

  • It’s rare for me to be completely bored. My main past time is just reading Twitter (I respond when I can, but I’m not always well enough for that). It takes very little energy and concentration, as it doesn’t matter too much if I miss or forget a tweet. If I can’t do that, then I’ll look at the penguin pictures on the wall, and when I’m at my worst and wearing eye mask and ear defenders, my imagination can normally keep me entertained.

  • I can take pleasure in other people’s achievements. I may not be doing much myself, but I am genuinely happy to hear about other people doing well, whether they have M.E. and improve a bit, or passing exams, or just doing something cool. Hearing about that sort of thing makes my day a lot brighter.

  • I have a lot of friends, who accept me for who I am. Okay, so most of them are online, and I’m terrible at keeping in touch with them, but when I am well enough to do so, they help make me feel good about myself.

  • I have a really good medical team. My GP is excellent- understands M.E., treats me well, and is willing to do whatever he can to help me. My consultant is also good, and wanted to make sure that there was nothing treatable causing my symptoms. The CFS clinic are doing graded activity therapy, not CBT and graded exercise therapy which would probably make me worse. They also take into account my autism when working with me (so I may not get enough proper rest, as I don’t find it restful, but they understand that I do find my Twitter reading as low enough activity to count as rest).

  • I have an amazing, supportive husband, who cares for me very well. He may be going through a bad time at the moment, but I’m still getting fed, have enough to drink, and get to the toilet when I’m well enough. He also empties the commode and my sick bucket when it needs it.

  • I have the most beautiful daughter in the universe. Enough said.

  • I have painkillers that actually help. I’m lucky that I don’t suffer from nerve pain (which is difficult to treat) and only have muscle and joint pain, as well as some headaches and a sore throat. The worst of my pain responds to tramadol, which while it doesn’t get rid of it completely, does make it bearable so I can concentrate on other things.

  • I don’t have insomnia. I may have sleep reversal at the moment, but when I am sleepy, it doesn’t take that long for me to drop off. I was surprised at how quickly I got back to sleeping naturally after coming off quetiapine, but I’m very grateful for it.

  • I’m not having any financial problems. I get all the benefits I’m entitled to, and one of the advantages of being nearly completely housebound is I don’t have that much to spend it on :p I buy the disability equipment I need when I need it, and also have enough left over for the odd book, or for some small treats such as bath things or chocolate. When I am well enough, I have enough money to go out, and can save a little bit so hopefully we’ll be able to go on holiday soon.

There are probably other important things that I’ve forgotten, but overall I am enjoying life, even if it’s not exactly what I want it to be.