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.