Tag Archives: aspie

My ASD: Mistakes. Are. Bad… Very. Bad.

I’m not even sure why they even exist… but these physiotherapists are just such a waste of time. She screwed up again – and I pretty much had a meltdown about it, also causing a big set of severe Fibro spasm attacks. Hoorah

After going to so much trouble to get the right date this week so my mother was here with me, the damn physio wrote in the wrong date anyway into the diary when she got back, and after waiting and waiting and waiting, I only find this out after I call when she’s an hour late. So that’s two ruined days because of her, which has just sent an already troubling and difficult week into a horrible tailspin.

It is clear that no matter what acts or policies that are in place, nobody cares about how they treat you when you have ASD. It’s OK for them – they’re not the ones who have to deal with the meltdown (or at least severe anxiety attack) that is the result of this god-awful thoughtlessness. After trying to deal with it all afternoon, I had an anxiety attack and mini-meltdown later on in the evening, after that panic built and built and built. It in turn ended up in a series of severe spasm attacks that were horrific and painful. But she didn’t have to care about that, did she? No. She could be ignorant of it, never know about it, never need to care about it. It doesn’t affect her. So why should she care, right?

Apparently, that’s how they all think. It’s certainly how they all behave… And it’s just horrible. To the point of being traumatising.

20160920_173759000_iOSWhen appointments are made, stick to them. Don’t be late. Call if you’re going to be late. Isn’t that “NT” politeness anyway? Well, it’s vital in my world. I’ve already had PIP mess me around. I’ve already been thrown into hell with the isobars down at 1000mb level, unable to even breathe sometimes it’s so painful. I’ve already had a hell of a morning, starting with 3-4 hours of going through the motions of trying to get up – yes, that’s how hard it is. And I’ve had to get up super-early so there’s enough time to do all this and regain an equilibrium before the appointment…

And then after all of my efforts I find the physio didn’t even try to get this right. After we brought out the calander and showed her all the dates my mother was available. She still couldn’t get it right. The emotional turmoil of this, of all my efforts for nothing, that the fact she could make such a mistake that cost me so much… It’s just too much to bare.

There’s also the other point that I cannot even begin to cope with changes… as well as the horrifying realisation that she probably didn’t get the message I left with their reception to cancel the appointment she wrote up, and that she might come tomorrow anyway. When she wasn’t supposed to. When I told her not to… And then I have to cope with that thought, with that change, with that intrusion, because she wasn’t supposed to come tomorrow… It’s horrifying to think that she thinks it’s OK to put me though such a thing, just because she can’t concentrate long enough to put the correct date down. It seems so unfair. It’s not like they don’t know I have ASD… They just don’t care, or have a clue about it. Or care to have a clue about it.

Proving legislation and policy  is a complete and utter waste of time.

Tomorrow, either I’m going to be home alone when she comes, or my father remains here with me instead of attending his weekly visit to see his elderly mother. I don’t understand emotion generally, but I know that uncomfortable feeling of guilt. And that last option makes me feel a lot of that. The former terrifies the bejeezus out of me – I have no intention of being there alone with her. I’ll either say nothing, or say precisely what’s on my mind… which I’ve learnt that NTs do not want to hear. Apparently they’re allergic to the truth. The polite fluff they engage in is still beyond me, even though I generally attempt to emulate it. Probably quite badly, but hey… at least I try. Which is more that can be said for the other way – not many NTs [professionals] try to understand ASD-Land at all.

Like the physiotherapist. And PIP.

GrumpyBearI am “ranting”, but it’s so very horrible. “NT” people never seem to understand this – although some at least accept it. I’m terrified of tomorrow (and that’s actually an understatement), and the fact the isobars are still on the floor are not helping. It’s going to be a long morning, at the end of which, I have to call the receptionist back tomorrow to verify the appointment has been cancelled and the physio is not coming. She was supposed to call about it (the physio, that is) and reschedule, and she never did. With that evidence I can only conclude she thinks she’s still coming here. It seems that if she has a mobile phone, neither her receptionist nor myself have the details of it to contact her directly when she’s out.

I knew they were a waste of time, but since the initial attempt at contact was a farce. It’s not ending, either. It still is. I can’t see any reason to continue with this – it’s one extra burden I can do without, given there’s no payoff from it. I’m already ahead of her game, and so far she can offer nothing better. So I’m wondering why I’m spending the effort of enduring hours of pain and torment to get up in time for her to come, when she’s not actually even coming in the end, because she couldn’t do one simple thing right – write an appointment in her diary on the correct day. And repeating it all again in case she turns up tomorrow. It’s harrowing.

I really am honestly scared of facing tomorrow. I hope I get some sleep… It’s “only” 1:49am as I write this now. And there’s a long night ahead…

 

A Question of Sanity

 


What Am I…?


It feels like it has been a long time since I knew what it meant to be “me”.

What am I now? Not much, it seems.

Curiosity is lost. I have no desire to read or learn – because I just can no retain any information anymore. I feel exhausted just picking up my Kindle, magazines, or iPad for anything other than fooling around with it. I shouldn’t – and quite frankly, I’m not even sure why.

I am immobile and housebound. Under a required house-arrest because the off-the-rack wheelchair makes me so ill it’s insanity itself to even attempt to sit in it anymore.

My strange neuropathic paraesthesia / (numbed?) Fibromyalgia /  Hemiplegic Migraine thing going on, that no one can actually explain, keeps me prisoner in its claws – I can’t walk, sometimes barely crawl, my fingers don’t work very often, and I can feel so terrible (paraesthesia, spasms, feeling like I’ve been filled with cement, brain-fogged, unable to eat or move) that I simply can do nothing but stare at the TV. Not really watch it, just stare at it.

I am badly overweight and struggling to even move, let alone try to be any kind of active. I do try – a lot. But the windows of opportunities are so sporadic, they don’t really count. So I don’t get to do the things I love(d)much anymore – Pilates, Yoga, dancing. I do them as much as I can when I can, and it’s literally quite the relief to be able to do at least something, no matter what it is. Another part of my past that I can touch occasionally, and feel something that brings great comfort and familiarity. There aren’t many of those left now.

I have so little control over limbs and key muscles. There’s no diaphragm, no pelvic floor, very little use of my right leg at the best of times, and on occasion my right arm too. I can barely feel my tummy except in one space in the very centre. I can’t sing, have to use Gown-up Huggies (or lady-pants, as Tena likes to call them), and I am a slave to the weather and air pressure (check your isobars if you feel really rubbish – I just stop working once it dips below 1020mb, and I fall apart and can black out in 1015mb or less).

Dignity is gone. I quite often have to crawl, or worse, be reduced to attempting to “commando crawl” because my arms and legs dont work properly. I need help to clean myself, shower, brush my hair, change, go to the bathroom on bad days. And the Grown-Up Huggies don’t help, either.

I lost the ability to drive. I can no longer cook. I have a robot I was so excited to make sitting around in parts. I have courses I wanted to learn that have sat around gathering dust, after only managing a small handful of them before falling too ill to carry on. I can no longer go horse riding. The list of books and magazines that keep going unread hurt me deeply. I feel like I live in loss and missed opportunity, and it’s quite frankly heartbreaking.

My memory has gone, particularly STM (Short-Term Memory). The long term memory went a long time ago, and has never really returned. There are people, places, things, occurrences that I have no idea about. Today I forgot how a General Election worked when you went to vote. I’ve been voting since I was 18… I hate to count how many polling stations I’ve been to in the subsequent near two decades hence. I should have known it, but I did not. People tell me things and have conversations with me, and I have no idea ten seconds later that it even occurred, let alone what was said. I’ve given up being disturbed by that – it happens too often now… it’s another unfortunate “new norm”.

The small things can really get you. I feel really put out I can’t now go to the cinema, because I can’t use my chair – I’ve spent ages looking forward to seeing the new Wonder Woman movie for months, and now I can no longer go. I feel awful I cannot cook my own food. I can’t even make my own tea, and the hot water dispenser is actually in my room (because once upon I time I actually could).

My ability to play games is sporadic, and I don’t enjoy it half as much as I should, could or would without this rediculous situation that I find myself in. The same goes with conversing with my friends, almost entirely losing my ability to actually speak to anyone – because it’s contra-indicating my ASD something rotten. I can’t fixate on anything but fear anxiety now – so there is no room for my usual crazy obsession about Mass Effect and Dragon Age. This might break my heart more than anything else.

I keep asking myself “What can I do?”… But there doesn’t seem much on an answer. I can sit… sort of. That causes problems in and of itself. I can stare at the TV… which I hate. Sometimes I can hold a conversation. On rarer occasions it might even be intelligent. I sit here thinking… and I struggle to think of anything more. That does not make me feel very good at all…

 

 

I’m waiting – constantly waiting – for it to “get better”. It doesn’t get better. It never get better.

For some reason, so far it’s only become worse. I really wish it would stop doing that.

Right now, it’s just existing in limbo, waiting to see if a new, proper, chair might allow me to have some semblance of an existence, in being that I get some respite from my incarceration here, get some perspective in going some places where I can take myself along. There’s always hope, and I really do hope to god this time I get some respite from all this by being able to “walk” myself about, to go for a “walk”, to make it to places that I can’t go now. Certainly couldn’t go in that other chair.

I’m trying to do good in waiting for it. Trying to get stronger arms and core. It’s not going too well, because despite it being June, no one told the weather, and the isobars and temperatures are through the floor – and we’re being bombarded by gales, rain, and storms. Fun. So far, for the last two weeks, the isobars haven’t risen above maybe 1010 or 1015mb. Next Tuesday (it’s very early Friday morning right now) it threatens to get to at least 1021mb. Hopefully, this time, it’s telling the truth. The last time, it most certainly was not!

If this weather doesn’t improve neither will I. I will still do as much as I can, but it won’t be the same, because the extent it makes me feel utterly terrible to the point of passing out can render it impossible to do anything. It seems so rediculous to be enslaved by something so rediculous, but there it is.

I hope I shall get some sleep sometime tonight – it’s 4:06am and I feel too wired to be able to sleep. I don’t even know why – if I did, that at least would be a start! I guess as an Aspie, that kind of thing is probably always going to elude me, but I do try my best to work it out. I could be anxious – it’s general election night. Or it could come from the fact that mornings can be harrowing after disturbing dreams/nightmares and being awoken badly in the morning – frankly the last two days have been extremely traumatising (no, I’m not kidding nor over-playing it… more like the opposite), and I do not have it in me to even begin to deal with a third day of such things.

Of course, I might not be anxious. It might be from a lack of being able to expel energy, thus never feeling tired. It’s hard to expel energy when you can’t move. It might be from the “pain” – and by that I mean feeling the intense sensations of Paraesthesia, which may as well be pain. It hurts, I suppose, but in a very different way to before, or what I’ve ever been used to before. So I just call it “pain” because it’s a shorthand that other people can easily understand, more metaphorical than literal.

I think the problem is I honestly don’t know if it’s all of them, any of them, or none of them. I wish I did, so I could do something about it. As it stands, I have no idea how to help myself, which is really annoying.

 

 


Practical ASD Assistance In Wales

There is not a lot of ASD assistance in Wales. The usual people haven’t really come through, particularly in North Wales. Having moved here from London, I’ve been astounded to find there is actually nothing here. And I mean nothing.

Zero. Zilch. Null.

Whilst there is stuff in the South, although predominantly only around the Cardiff and Swansea area (as if the rest of the entire country doesn’t exist), the rest of us are generally ignored. There is no help out there… unless you’re under 18, then perhaps there’s at least a little. For adult? Nada.

In compensation, there is a website, for ASD Info Wales. This has a few things that can be of practical self-help, and it does have a good amount of documentation for people with and without ASD to assist with life and interactions.

The ASD Planner – found at ASD Info Wales – is a good example. It’s an app for Android or iOS which is an easy and useful “tool” to use to help deal with situations that may arise… rather like a cheat-sheet for things.

 I’ve found it useful, so I thought I would share it.  🙂

 


Being Literally Under The Weather…

More long days of Fibro Flareups again. They really are tiring, and they really get to you. They get me down, but even more so do they really get to me. They hurt and they’re difficult to get through, you can’t do anything, and of course that all mixes in with the stresses of the permenany Hemiplegic Migraine.

In and out of something that borders between unconsciousness and sleep, I’ve been able to accomplish nothing I hoped to today. They’re only basic wishes –  brush hair, shower, play game or read, perhaps go out or watch a TV show (Versailles is the current favourite). However, I instead literally get to do nothing because I’m passing in and out of consciousness, and it’s really not nice at all.

This is, quite frankly, dehumanising, disheartening, frustrating, and upsetting. When you just want to do one or two basic things and you can’t you start feeling really, really, pathetic. And inadequate as a basic human being. My hair is a mess, a shower would help on numerous level – not just the obvious one – and playing my games actually puts my brain to work when nothing else can. It’s pretty terrible when you can’t just do at least one of them.

img_0904

The reason for this flareup is the weather. I have discovered personally that if the isobar pressure drops into a low of under 1020mb (which is quite high), then I suffer. 1010mb and under and I may as well be dead. I certainly wish I was, to be honest.

On this day, it sat at 1011mb, but was also thrown at me alongside heavy rain, cold temperatures, high humidity, and high precipitation. All together it teams up into the proverbial perfect storm. And I am trapped right in the middle of it.

It’s been hit with everything I have – Pregabalin, Pukka Ayurvedic teas, Key essential oils, even Courvoisier. All given throughout the day – the parts I’ve been awake, anyway. It’s kept a lid on the worse of the “pain” (which in my case now means extreme paraesthesia, and not “normal” pain, which I had before) – however, not enough to stop me from crashing out the entire day. Until now, of course, at 1:00am. No… Now I get to be wide awake. Yey…

The bad days do not make the bad days better. The good days only serve to make the bad days more frustrating and upsetting. When you see others getting on with the basics, you feel like something between a complete failiure as a person, and so utterly usless you may as well not exist. When it’s hit-or-miss as to whether you can do them too, then it’s just hugely magnified. I find that very difficult to deal with, and feeling non-funcional is one of the worst thing that I can go through and experience.

I’m hoping it’s going to get better – supposedly tomorrow should go up to 1020mb with no rain, so that might offer a little respite. Next week is supposed to be quite warm with high pressure too (although with a Bank Holiday looming, I doubt it will do nothing but give way to the patently required Bank Holiday showers and soggy weather…).

But… it’s days like today that really makes it hit home just how bad things really are, and this is a seriously debilitating condition that I have no control over. This is the psychology I can’t get my head around – accepting that this is the case, that I have no control over it. Yes, there are some things that can be done, and I am doing them… what I know about, anyway. It’s not like I’m getting any guidance here…

I hope one day I’ll be able to… coexist… in peace with it, and I hope that day comes soon, because the upset I get from days like today took their toll a long time ago, so every one since has been adding to a high burden I already carry around – what I call my “ball of wrong” in my tummy. It sounds silly and vague, I know, but it’s the only way I can identify things or emotions in me that this is causing, and there’s a lot of them. It’s like a giant “Miscellanious” cupboard stuffed to the brim with unidentified thoughts, feelings, pain, confusion, and scared, whigh has been accumulating since this has started, and it lives in my tummy. That’s just ASD for you, it seems.

Being as Aspie Girl with all these things going on everywhere certainly isn’t easy…


MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.