Category: Autism

Danni

Language Issues

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

Thanks to my ME and the brain fog and cognitive issues that come with it, I have a few issues with language that I never used to have. I forget words, muddle them up, say the wrong thing. I get a dyslexia like problem where words get jumbled up on the page and so I misread them, so my understanding of them isn’t great. It happens both with written and verbal communication, reading and writing, speaking and listening. Sometimes this is funny, sometimes it’s embarrassing, most of the time it’s frustrating.

Autism also brings its own language stuff to the table. I still take things literally when initially hearing them, though I can now “translate” most common figurative phrases into their actual meaning. I struggle to adapt what people have said to make it fit my personal situation (that caused more of a problem at college than it does now). Sarcasm is often a struggle- I sometimes understand it, and can even use it, but other times I take what is said seriously. As is often the case with autism, my ability to process language is variable day to day (or hour to hour). ME just makes things all the harder.

I love language. I like to play with it, changing words into forms that sound nice and feel nice to say, repeating words I like over and over (bananas!). Johan and I can judge each other’s moods based on how we’re using language. When I was younger I was called a walking dictionary due to my like of using new words I’d discovered that most people didn’t seem to understand and knowing the meanings of loads of unusual words, but now I stick with a vocabulary that is mostly understood by those who I want to communicate with.

How language is used interests me. As my main source of information at the moment is Twitter, I see most things in bite sized chunks (very good for a foggy brain). Some of what I see I agree with, some of it I don’t. I wanted to write a bit about it now. (I’m sorry if this isn’t very clear or coherent, I’m still waiting for a good day to happen and wanted to write it now.)

The main use of language is communication. For me, the meaning and intent of the communication is the most important thing, as although language can be beautiful in itself, it’s the communication that makes itself useful. I mostly don’t worry about the actual words used so long as the meaning gets across. There are exceptions to this. I don’t like the use of language that is used offensively to imply a group of people are inferior to others in some way (racists insults, the r-word, things like that). I do like people to determine their own language to describe themselves, even claiming back words that were previously used offensively (crip and mentalist are two that are used quite a bit by those I follow on Twitter). What I dislike most though is the use of language to exclude people.

There are a few areas where language is being discussed in the communities I’m part of. In the autism community, there’s the removal of the diagnosis of Asperger’s Syndrome from the DSM 5. I consider all those diagnosed with Asperger’s to be autistic (as it’s classified as an autism spectrum condition, and where the line is drawn between Asperger’s and autism seems to depend more on who diagnoses you than your actual pattern of skills and difficulties). There are some who disagree with this. I don’t like the term Aspie for myself, but don’t get upset when others use it. My personal preference is to be described as autistic- I believe that fits me best, as a distinction made based on my language abilities as a toddler doesn’t exactly have much bearing on my abilities as an adult. I get slightly irritated when someone describes me as having Asperger’s Syndrome (as that’s not how I describe myself) and quite a bit more irritated when someone describes Johan as having Asperger’s (as that’s not even his diagnosis) but I’m mostly irritated at those who think that having Asperger’s is better than having autism (or better than being neurotypical, or neurodivergent in other ways), as I believe that’s wrong (everyone is equal to me).

In the ME community, it’s the name itself that’s the main issue. There isn’t a universally agreed name for the illness, which sucks. My diagnosis was originally given as myalgic encephalomyelitis, but has also been described as chronic fatigue syndrome. In quite a lot of places the two terms are put together. Some doctors use myalgic encephalopathy. It has loads of other names too. Some people dislike it being called ME as it’s not obviously accurate. Quite a lot of people dislike the term chronic fatigue syndrome because it trivialises a serious debilitating illness and makes it sound not that bad. My view is I prefer ME as it is taken more seriously by doctors and is closer to describing the condition, but I really don’t have the energy to get into massive arguments about the name as I’m too busy trying to live with and try and get better from it. I meet pretty much every set of criteria for ME or CFS I’ve seen, and I know some of the issue is that some people are diagnosed with CFS who don’t have the same illness as those with ME (some of whom may have other, possibly more treatable conditions) and that’s been used to promote treatments that are harmful.

Although the name is important (as it does affect attitudes), some people seem to believe it’s the most important issue, and if you don’t agree with them you’re not good enough. I’ve seen comments along the lines of all those diagnosed with CFS aren’t as ill as those with ME (which one you get diagnosed with is more to do with who does the diagnosing) and that if you combine the two (as I do sometimes to be inclusive to those with either diagnosis) it’s the worst thing ever. It’s draining. I’m far more interested in effective treatments and a cure, as having a name that everyone agrees with, though good, wouldn’t do much to take away the pain, weakness, muscle spasms, jerkiness and other horrible symptoms I have. Using the name to exclude people from the community and possible sources of support is really sucky.

In the general disability community, there are other language discussions that come up. A big one is about person first language. That’s where you consciously say a person with <autism/deafness/etc.> rather than an <autistic/deaf/etc.> person. The claim is that it puts the person before the disability. I’ve mostly heard this from non-disabled people, but I’m sure there are disabled people (or people with disabilities) who believe this. For me, I believe this is very individual. I consider being autistic (and being disabled) part of my identity. I’ve always been autistic, and as it is a difference in my neurology it affects how I perceive the world. For this reason I normally call myself autistic, the same way I’d say I’m tall. I’m not strict with it though, and will sometimes say I have autism if it fits better with what I’m saying (just like I can say I’m blue-eyed or I have blue eyes, and both are accurate). I’ve been yelled at (by someone without a disability) for calling myself autistic before, and feel that was very much wrong as it’s my identity and they were trying to force their beliefs on me in an area which directly affects me.

I feel different regarding the ME. As it’s an illness that causes disability, rather than just a disability like autism is, I don’t see it as part of my identity. So I pretty much always say I have ME. Others will probably disagree and may see their illness as part of their identity, and that is their right and I will respect that, and will try to remember what language they prefer (and hopefully they’ll take my disability into account and be forgiving if I mess up sometimes). I know people who feel strongly both ways on person first language and other issues, but so long as everyone is respectful and agrees that what is right for an individual is determined by that individual, then all is good.

The biggest reason for wanting to write this blog post (though I’d been wanting to talk about all the above for a while) is because of some recent conversations I’ve been seeing on Twitter. Most of these are in more general equality communities (feminists and such) rather than specifically disability related, but disability politics and language is obviously involved in it. It’s regarding using language as a tool to exclude people from a community, and ultimately from equality.

The first way I’ve seen it happen is by using language that is offensive towards a group of people, while claiming to be for equality for all. I’m not going to go into any specific examples but feminists who use language that insults transpeople is an example. Now I believe that intention is a big part of communication, and this may occur accidentally. If it was unintentional, I believe the best thing to do (when it’s pointed out to you) is apologise, and try not to repeat the same mistake. Those you insulted may be angry, but I believe most people have good intentions and if you can do your best to learn from it, then it should calm down. Of course, this may also be done intentionally, because unfortunately some people don’t believe everyone is equal and some people believe that if you’re attacked the best thing to do is to attack others, in which case you’ll have a very angry group of people and hopefully the law can step in if it goes too far. I also believe you should challenge the opinion, not the person. Responding to hate with hate just makes more hate.

Now I’ll admit here that I don’t fully understand the concept of privilege as used by those in the feminist/equality community. I know that as a white, literate, disabled female in the UK I have privilege due to my skin colour, literacy, and living in a “developed” country with a welfare system, but men and those without disabilities have privilege above me cos I’m a disabled woman. I’m guessing it’s more complicated than that but I’ve yet to find an easy to understand explanation (I especially don’t understand how my privilege works regarding my sexuality, as I’m bisexual but most people assume I’m heterosexual).

That brings me on to the second way I’ve seen language used to exclude people. I’ve seen some people in the feminist/equality community use lots of jargon and terminology, and if you don’t understand it then you aren’t a proper feminist and you can’t be a good ally or whatever. That attitude excludes a lot of people. For me, it scares me from even getting involved in any conversations as I’m so terrified I might make a mistake and someone will get angry at me (and I’m not the only one who feels that way). It excludes those who for whatever reason don’t have the level of education needed to understand those terms. It excludes those with learning disabilities. There will be others as well. This is especially upsetting for me when it happens regarding disability issues as so many in the community have difficulty in using standard language to communicate to begin with. The insistence that everyone uses the same jargon (with the assumption that everyone has the ability to understand and use it) is very scary for someone with mild language and cognitive difficulties and anxiety. There are also those who play the “I have it worse than you” card, often without knowing the full situation of the other party, and believe they can never understand if they’ve not experienced the exact same difficulties. I believe that everyone is equal and want to help make the world safe and happy for everyone, no matter what differences or similarities they have, but I’m scared to do much as I’m afraid of being attacked by those who say they have the same aims as me.

I wish I knew a solution to this. There are things that could improve matters. Making information about feminism and other equality subjects more accessible for those with learning disabilities by using plain language and easy to read formats would help a little bit. Understanding and tolerance go a long way. Learning the best way to deal with bullies, fun suckers and trolls (who exist in every community, unfortunately) would help for some situations but I’m guessing that often depends on the situation.

On a personal level, I’m just going to do my best to treat everyone like a human being who deserves equality. I’ll make mistakes, but I hope to learn from them. Some of those lessons may be embarrassing and/or painful, but I hope in the long run they’ll make me a better person. No matter what, I have as much right to be here as any other person on this planet.

 

Danni

Hair Be Gone

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

An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won 🙂 Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.

This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.

New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.

We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).

I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.

I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.

Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both 🙂

Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.

In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly :P). Johan is finding it difficult but hopefully he’ll get used to it soon.

Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later 🙂

Danni

Frustration

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

I am frustrated. I’m fed up of being in this position and not being able to do anything to get out of it. The combination of autism and ME is making dealing with both harder.

I’m frustrated that I’m still stuck in this relapse, and showing no signs of improving. Normally by this point I’m starting to be able to manage being propped up in bed, can have lights on in my room, and can cope better with Johan being in here. I’m not improving. I suppose the good news is I’m also not getting much worse either, though I’m still having periods of paralysis, times where my muscle spasms are so bad I can’t use my tablet, and I’m still in more pain than I’m really able to cope with. I remembered a guildie in WoW had offered to get me some pot for the pain, then remembered that was Glamourpuss and he died last week. He was really an awesome guy and I’m going to miss him (and not just because of that- he was generous in many ways, along with being funny and a nice person to talk to and play with). I do believe cannabis should be available for pain relief, as I know it helped him a lot with his cancer pain. I saw a BBC News article about pharmacies selling prescription drugs and the first thoughts I had were where. Johan is going to speak to my GP today so hopefully something can be sorted.

I’m frustrated by little things. I meant to book a delivery slot for a food shop last week and forgot. I wanted to send my friends Christmas cards and have been too ill. I don’t have enough money to get Sammie everything on her wish list (and I know most parents are in that position and she doesn’t need to get everything, but it doesn’t stop me wanting her to have it all, especially since I know what it’s like not to get what you really want). I’m frustrated that I’m unable to do anything about my hair, which hasn’t been touched since a few days before I relapsed and now feels really uncomfortable. I’m not even sure if it’s possible to detangle now. I want to watch videos for Project for Awesome, including one Sanabitur Anima Mea made, but I’m too ill. I’m frustrated there’s so much world suck and I can’t do much to fix it.

I still have no speech. I’m pretty sure this is more autism than ME, as I’m able to make noises (if it were ME then I wouldn’t be able to make them as I wouldn’t have the energy). Attempts at talking just come out as either nothing or random stuff. The silly thing is I can make some sounds reliably, they’re just not necessarily the ones I want to be able to make. I can make a meowing sound. Squee turns into eee (happy noise). I’ve noticed I’m better at vowels than consonants, which someone on Twitter says is easier for them when ticcing. I know what I want to say, just can’t figure out how to produce the right sounds.

I feel a bit like a toddler as that’s kinda how I sound, and I try to use gestures to communicate along with whatever noises I can produce. I know that this has happened many times before, and normally the ability to speak just comes back by itself, but it’s never been gone this long before. When I was younger it was rare for it to be gone more than a few minutes, so apart from being yelled at when I didn’t respond on demand no-one noticed apart from me, and I didn’t know that it wasn’t usual. Sometimes (normally after a panic attack or complete sensory overload) it would be gone for a few hours, but once I’d recovered enough it would be back.

Since I got ME it changed a bit. Occasionally I’ve woken up without the ability to speak, and it came back either later that day or after sleeping again (in fact, sleeping used to be a pretty reliable way of getting speech back). I’ve had times where it’s been gone a few days, normally during a relapse, but sometimes that’s been because I don’t have the energy to speak (I’d be unable to chew at the same time, for the same reason). I know I’m in a relapse now but I can chew and my swallowing isn’t too bad, so it’s not an energy thing. I just can’t do speak, and it’s very frustrating.

Typing has always been easier than speaking for me, though speaking is normally faster. Reading is easier than listening (both because I have auditory processing issues, most noticeably if there’s background noise, but also because it’s harder for me to remember what’s been said, which doesn’t apply when reading). I do type when I can’t speak, but there are problems with it. First, it’s tiring in itself. This doesn’t matter so much for things like blog posts and Twitter, as I can take breaks whenever I need, for as long as I need. If I’m trying to have a conversation in person, they’re not always going to be able to wait for me to have rests while responding. Secondly, it’s slower, especially now I’m often unable to type using a hardware keyboard. This not only means the other person has to wait, but I’ve got to try and remember what they’ve said and what I’m wanting to say while typing. I frequently forget one or both parts of that, so I have to give up on responding to them.

The problems with using typing when the other person is speaking have been most noticeable when I’ve been trying to do it in appointments or in hospital. They’re also normally the situations where I most need to be able to communicate effectively. I’m working on ways to reduce the problems (making a health passport for common questions, looking into alternative forms of AAC that will work better in that situation) but I get frustrated because not only do I often end up not being able to communicate what I need, I’ve had to put so much effort into understanding what the other person is saying I end up getting payback from the effort, which is the last thing I need during a relapse. Johan helps a bit, but he has a tendency to forget or mix up certain important information (he can never remember my weight, and has said I’m more than a stone heavier than I was on more than one occasion). Also, when he’s reading what I’m typing for me, he sometimes doesn’t read everything I type, which has meant my doctor didn’t understand exactly what I was meaning.

I also feel very vulnerable. I can make some noises, but I’m not able to shout due to ME (that is an energy issue). When Johan is asleep and I need him, it can sometimes take me an hour to wake him up (often after resorting to phoning him, the noise of which makes me more ill). When he’s on his computer, he gets distracted and doesn’t see that I’ve been messaging him desperately for a while. We have a care call system, and I wear the button around my neck (and frequently get strangled by it during the night), but it’s so loud it sends me into overload, they don’t know I’m unable to speak (due to the loudness of the system I’m always non verbal for a bit after it’s been on) and they don’t know anything about me, so it’s unlikely I’ll ever use it. Then there’s the fact I can’t actually puts the button most of the time because I don’t have enough strength in my hands. The one good thing about it is it’s connected to the smoke alarm, so they automatically get alerted if it goes off. It means if there’s a fire and Johan is out, I’m less likely going to end up dead.

I feel most vulnerable when Johan is out. If the phone goes, I can’t answer it and it makes me panic. If the doorbell goes, I can’t answer it as I can’t get out of bed. If the doorbell goes continuously and there’s also someone banging on the window, which has happened more than once, I’m terrified. I have access to my phone and tablet in bed. I know I can text 999 (I’ve registered for it) but I’m not aware of an equivalent for 101 (non emergency police number). Sometimes the messenger service Johan and I use, Google Talk, messes up and he doesn’t get the messages, which is more important when he’s out. Sometimes he just doesn’t realise he’s got messages. I can ring his phone to let him know I need him urgently, but then I have to follow that up with a message to let him know what the issue is. I also am not sure what classifies as an emergency enough to use 999 when it’s not a fire.

If I only had autism (and the anxiety that goes with it) to deal with, I’d still be vulnerable but as I’d be able to get around independently and at least open the door. I had many years learning how to deal with things as an autistic, and though I’d never manage completely independently I could manage life okay, and probably finish my education and look into jobs. I’d be able to throw extra energy into communicating like I used to do, and recover relatively quickly. If I only had ME to deal with, I could learn to pace properly (autism means I struggle with transitions so having lots of short activities interspersed with rests is counterproductive for me), be able to communicate better and possibly wouldn’t be as sensitive to everything. The combination makes everything harder, as it multiplies the issues.

I kinda feel bad not being positive and being all grumpy, but I’ve had a bad few weeks and I’m in pain and everything sucks. I am lucky to have Johan and my friends and an awesome daughter and my tablet and everything, but right now it doesn’t feel enough to cancel out the frustration and grumpiness. Also, I’m in pain. Everything hurts and I don’t like it and I just want it to stop now, please.

Danni

I Am Worthy

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

When I was depressed I felt worthless. All the insults and mockery I’d got as a kid from bullies (both children and adults) I believed. When I was at my most mentally ill, I genuinely believed that I was the most evil person in the world, and that everything that was wrong with the world was my fault. No-one was able to convince me otherwise at the time, though my friends and Johan did try.

It has taken me a long time to regain belief in myself. It’s still a bit shaky- when I’m having a bad day the old thoughts and beliefs come back into my head, and it’s hard to remember that they’re not necessarily true, even if they were said by people I respected or loved. With help though, it is getting easier, even on the bad days.

I want to understand everything. As a kid I used to read encyclopaedias, trying to learn everything about everything. As I’m autistic, I have to learn about social interactions and customs through mimicry or study as none of it comes naturally to me. Because I put so much effort into trying to understand, I value what I’ve learnt much more than I think I would have if it had been easy.

I was told I was intelligent, but lazy. I didn’t believe the intelligent bit as I felt stupid, as that’s how I was made to feel every time I misunderstood something or said or did the wrong thing. I didn’t think I was lazy as I was trying so hard to do what I needed to do, but I must have been because I struggled to get homework in, my legs got really tired and ached if I walked long distances, and I couldn’t write fast enough. Along with other insults, put downs and constantly changing expectations that go along with living in an abusive household it wasn’t that difficult to see why I developed depression, which I was more likely to get anyway because of my (at the time undiagnosed) autism that were causing my other issues.

Now, I know I am worthy. I am worthy of love, of protection, of support. My worth has nothing to do with what I can or can’t do, it’s because I am a person and every individual is worthy. The current government may say I’m a useless scrounger who should probably be dead because I can’t work, but I know that it’s not true, and I have Johan and my friends who believe in me. I’m lucky to have this ability to learn easily that some people call intelligence, and I want to use it in ways that can help others if I can. But that still has no say in my worth. I’m worthy just because I am me, and there is no other Danni who is like me, or will be again.

We should help those who need help, because they are humans and that is what they deserve. Someone who can’t work due to disability or illness is not worth less than someone who puts in 50 hour weeks, as a person’s worth isn’t based on what they do, it’s because of who they are. Even the severely disabled, that may struggle to communicate in ways that those around them can understand, are worth loving and being supported, as they are humans and they bring themselves to the world.

I’m very lucky to have Johan and friends who love me, who like me for who I am. I might be odd, do some things that people consider strange, might be severely disabled and need help in every area of life, but there are people who love and care for me and want me to have as good a life as possible. I want the same for everyone else, and I love Johan and my friends back just as much. I may be terrible at initiating and keeping in contact with people, but I try and I think my friends understand. If there’s a way I can help my friends, I want to do it as they deserve help just as I do.

I want to live in a society where people get help based on need, not money. Where supporting those who need help is done happily as that’s what a good society does, and that help is provided in such a way to ensure that every person can contribute as they are able. And that may not be financial contribution through having a job- it might be through the arts, through friendship, even making someone laugh by getting up to mischief. Unfortunately at the moment the UK is going in the opposite direction, as money is more important than supporting those who need it. I know I am worth supporting, but it seems not everyone agrees.

 

Danni

Heart Beating Faster than a Japanese Train

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

So I failed NaBloPoMo. Since it was due to a relapse, I’m a bit sad but not massively upset. I would have liked to have completed it but never mind. What I am going to do is try and get back into blogging regularly again, as I enjoy it and apparently people like reading what I have to say 🙂

Blogging is an interesting thing for me. It’s the only form of writing that I like doing. When I’m able to talk about the stuff in my head, the words just come tumbling out of my head through my fingers and appear on the screen in a way that normally makes sense. Once I get started, it’s hard for me to stop until I’m finished, which is why so many of my blog posts end up so long. I’m not very good at writing essays or fiction, but blog posts I really enjoy.

I’m doing a little bit better than I was. I’m able to chew and roll over independently again, though I have to be careful how much I do it as yesterday I overdid it. I’m still lying in the dark in the quiet, and need sunglasses on to manage my tablet, but it could be worse. The pain is still really bad and I probably could use some morphine but since even having the kitchen light on with my door open sets my body into spasm going into hospital is probably not the best idea.

I’m in full sleep reversal, which is annoying. As I’m very jerky right now trying to sleep is hard, as my arms and legs keep moving without my permission. In the mornings I normally zonk from exhaustion an hour or two before the carer arrives, which is annoying as I want to have a wash and things. The good news is my favourite carer (also known as awesome morning carer, though she occasionally does evenings) is back after being gone for an operation and then her body deciding to be mean to her while her immune system was compromised. She is doing better now though which is the good thing.

Favourite carer is the only one I currently trust to wash me when I’m this ill. She requires a lot less instructing than the others, and she’s been working with me for a while so knows me very well. I think it helps that she has a disabled brother who has some care needs not too dissimilar from mine so she knows what to do already. I’m a bit different from the normal frail old people the agency normally helps so most of the other carers don’t know what to do with me. One of the other carers was told not to turn the electric toothbrush on at the beginning of the relapse, but did it anyway causing me a lot of pain that was unnecessary. I know those sort of mistakes are a lot less likely with favourite carer. Now I just need to be awake when she arrives so I can have my wash :-p

Favourite carer also brought me some penguin gloves her daughter picked up from Primark for me (I’ve given the money back) 😀 They are fingerless with the mitten pull over thing, which are awesome and exactly what I wanted. They even have purple stripes on them. They go very well with my penguin hat so I’m going to have a virtual trip in the snow when I’m next awake during the day. It has been snowing here but I’ve only seen it on a photo Johan showed me.

The title of this blog post is referring to one of my more annoying ME symptoms- tachycardia. I’ve noticed that since getting more ill in general, my heart does more of what I call funky dances, which is my way of describing it not acting normally. The most usual is the tachycardia, but I also get missed beats, extra beats, irregular heartbeat, a really slow heart beat. I don’t think any of these except the tachycardia have shown up when I’ve been tested, but apart from the really fast heart beat they tend to only last between a few seconds and a few minutes, and not occur that frequently. Still, they’re all annoying, and I’m pretty sure a resting heartbeat (by that I mean lying in bed not doing anything but breathing, as anything else is exertion to me) of over 120 beats per minute isn’t entirely normal. It goes up a lot when I do anything. Maybe that’s partly why I have a complete intolerance to being upright?

There’s been some news about autism recently. There was a conference thingie in the US Congress or something (my memory is really bad at the moment, sorry) and from what I can gather from Twitter and blog posts most of it was going on about how autism was a massive burden and things like that, and only two people (who were autistic) said anything differently. I’ve made it quite clear that I don’t want a cure for autism, and I can’t see how one can occur without completely changing the person due to the way it influences every part of the autistic’s life, but what I do want and support is education and support so that every autistic person can live as best a life they can. I know that the autism specific education I got at Interface was invaluable to me, and although I’ll never manage life completely independently it did help me see that I can achieve if I have the right support.

The other big news is that the DSM 5 has been approved and that Asperger’s Syndrome is being removed and everyone is being put under Autism Spectrum Disorder. I don’t actually mind the removal of Asperger’s Syndrome- whether you got diagnosed with that or autism mostly depended on who was doing the diagnosis, and the only major difference between the two was the lack of language delay, which becomes a bit irrelevant in later life. I do know the only reason I got the Asperger’s diagnosis was because I spoke on time. My main worry is that people who need a diagnosis for support may no longer get one as they might not meet the new criteria completely despite having problems requiring help, but that’s to be seen.

I’ve been describing myself as Autistic rather than Aspie almost from when I was diagnosed (my diagnosis is Autistic Spectrum Disorder, specifically Asperger’s Syndrome so I was kinda diagnosed with both anyway), after talking to people with both diagnoses and seeing that there wasn’t that big a difference. I know that there are some people (especially parents) who will say that I’m not like their kid, but although I don’t have a learning disability along with autism, I do still have a lot of difficulties. I’m quite frequently non-verbal (at the moment I’ve been unable to speak for over a week). I have meltdowns. I self harm, including head banging. I used to flap, rock, and stim in other ways, until my ME got to the point where it’s no longer physically possible. I have obsessions. I’m over sensitive to noise, light, smells, touch, and taste, and that was the case before I got ME (though the ME has made it worse). I have a sensory need to have something in my mouth, so when I’m at home I have two dummies- one to suck on, the other to feel and sniff (I’ve spoken to one other autistic person who had a similar need, which made me feel a lot better about it as psychiatrists had made me feel really bad about it). So long as it’s not harming anybody, I don’t see why I should give it up, nor do I agree with having to appear as neurotypical as possible in public (which is exhausting and I can only manage for a short period of time anyway).

Johan shares some of my difficulties, and we both need support. Part of the reason my DLA form took so long to do was because neither of us were able to contact the right people to help us, due to our difficulties in communication (we both get exceptionally anxious and panicky when we have to try and communicate with someone we don’t know at all or very well, even by email which is our easiest method). Johan’s difficulties in executive functioning means that neither of us eat as well as we should (and my ME makes that harder). I’ve been asking for help with sorting out making appointments, contacting people and stuff for over two years, and I’m willing to pay for it, but we’ve not got anywhere and because of the difficulties that mean we need that support we’ve not been able to chase it up.

There are autistics who can manage completely independently. There are those who need 24 hour support. Johan and I are in the middle- we can help each other quite a bit, but even if I weren’t ill with ME we’d still need support with communication as we both struggle with that to the point where it can be harmful. Of course my ME makes things a lot more difficult, but I’m lucky because my autism makes some aspects of it easier to deal with, like only being able to keep in contact with people online and stuff as I normally found that easier anyway (though I do enjoy seeing my friends in real life). Also Johan is able to understand when loud noises and things are painful because he experiences it as well.

That ended up being quite a bit longer than I was expecting. The other things I wanted to mention were I’ve been shortlisted in the Autism Spectrum Disorder category for the This World in Mentalists awards, which I wasn’t expecting as this isn’t specifically an autism blog, though the subject comes up with me being autistic and all :-p Thank you to those who nominated me, it was very kind of you 🙂

There are two blog posts I think are important to read about the realities of ME. Mine is severe but normally isn’t as bad as it can get, and these blog posts made me very grateful for what I can do. The first is from No Poster Girl, who has improved a bit but has written a blog post about energy use that is especially good for those who want to know what ME is like – A Thousand Things.

The second is by Jenny, who is currently living with very severe ME that makes my relapses look like a picnic. She’s written about how she’s still fighting after 8 years, despite doctors and others treating her badly (unfortunately very common in ME, partially due to Simon Wessley who pushes the ME is all psychosocial view) – When it hasn’t been your day, your week, your month or even your 8 years. I really hope that Jenny gets the chance to improve soon, as she deserves it.