Category Archives: Treatments

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

 

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Physi-Oh… Lordy…No…

The isobars are on the floor again (1000mb tomorrow, and I’m feeling it…).

img_0896I’m wearing arthritic gloves just to type this. My hands are aching horribly (well, they’re crackling, buzzing and being mini-shocked, like their on that electic ball at the science museum, and “clawing”, but “aching” could be shorthand for it).

My legs are even weaker and buzzing and my back in on another planet of wrong – and my abdomen is in constant spasm.

So, in other words, it’s a normal day for crappy air-pressure day. Naturally.

However, what I had hoped for – when that damn physiotherapist finally turned up – was that I would be able to be taught how to help deal with it. To have massaging exercises, or movements, or just help to deal with these day.

You know what I did get? A frickin’ printout that I could (just about) manage 3 of from it. On a really good day. That were already incorporated into my usual practice on my (fun!) DVDs. They could have just saved her time (and damn salary) and just emailed it to me.

stupid-people-shut-upShe poked a couple of times at my leg, asked me to move whatever I could. Then promptly ignored everything I told her and gave me the most basic printout I think she could find, made for people who could move things. It was for stiff and weakened people, maybe older, maybe who have been a little bedridden. It was not suitable for what I had, which was something for perhapse lower-body paralysis or stroke or MS (which is everything that this emulates, and often all at once…). They clearly have nothing specific to Fibromyalgia or Hemiplegic Migraine. It seems they may not even have something for the others either, which is strange and confusing – and entirely unhelpful.

The worst thing is, if they had come when they were supposed to, six months ago, these may have actually been relevant… a little. But now, that ship really sailed. Off into the distance, beyond the horizon, and far, far away…

I’ve done more for myself – found actually appropriate exercise DVDs and a great YouTube yoga video – all of which are both helpful and fun, all from my chair, with some on the floor. I found better stretchy bands than they were going to give me. I have hand weights. I wanted help going further, going forward, with better things, more intensive things. But… no. Just stuff I’d already covered, if I could do it. God only knows what help people with even more debilitating conditions or paralysis get from these people, they just don’t seem to have a bloody clue.

I don’t know whether it’s severely OCD “Heath & Safety” rules that I don’t know about, or whether they’re just idiots, but they’re really not helpful. Just next time, don’t bother me and email the damn printouts instead…

About the only thing I got that was useful was that she confirmed that it was not safe for me to even attempt to walk (and oh, I am so not making that mistake again now…!) – which will be handy if the PIP thing gets awkward again (but I’m fairly sure there will be no lying this time, at least). Otherwise, I’m not sure what use they are to me…

Carry Me

 

 


10-11 June 2017

Having spent most of this week under extreme distress because of the weather and distinct lack of isobars, yesterday I ended up in extreme meltdowns and severe hemiplegic paralysis. This is, of course, thanks to the terrible weather inducing a horrible migraine… and that migraine travelling down into my extremities instead of up into my head.

Don’t get me wrong – no one in their right (or even wrong) minds want or prefer that horrific and excruciating migraine headache. Ever. However, that does not mean I have to be pleased with the Hemiplegic Migraine that then takes its place.

The problem also is that – despite knowing I have been experiencing hemiplegia instead of “normal” migraines since I was at least 17 – I still readily forget they still have to be treated the same. Not with medication: I mean in how they’re dealt with.

Today, because of this, I ended up blacking out all day. The closest I can describe it is like being seriously generous with Xanax, or Valium, and you are entirely unable to keep your eyes open. You might come round for a few seconds, but then off you go again. Rather like with General Anaesthetic, after the surgery. It took my mother to point out this was exactly my behaviour with “normal” migraines – and given the long-term stress, the extremely low isobars, the fact I’m under wheelchair-inflicted house arrest, it was obvious this was what was happening again. The severe hemiplegia I suffered yesterday was a testament more than anything to that.

It had now made me realise just how seriously I have to treat this – just like I used to treat my migraines when I was young.

I have suffered from them since I was 8 years old. They became more severe from when I was 10. They really hit their stride between about 12 and 15 – and the fact that was the most stressful time of my life (until now) shows testament as to how much stress is a great trigger for them. The Triptans didn’t turn up (well, in north Wales at least) until I was 17, and they were a godsend… but only for “normal” migraines. In Hemiplegic Migraine they can make them worse, or put you at risk of a stroke. So they’re not really that much help.

What has always been some help is mentality…. Kindness and understanding, allowing yourself the time to go through it and recover without expecting anything more than you can give. The next time this happens, I won’t be so scared. I’m a veteran – even Master – migraine-enduring warrior, so I don’t even have to learn anything new. Just go back to what I know.

It saves an awful lot of time and brain-space, I can tell you.


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.  🙂

 


Wheelchair Madness

Currently being annoyed by how difficult it is to sort out a proper wheelchair. The one I have is heavy, off-the-rack, and not fit for purpose. Not fit for pushing, or sitting in, or going where I want to go, like on basic country trails. It’s great for maybe an older person or less adventurous one who doesn’t want to walk the dog around a country park or Snowdonia lake… but it’s no longer for me. I need a proper active one… before I break the one I’ve got now. It’s already tried to break me… Now it’s time for a proper one.

Someone came to fit me for one… Privately, because I’ve been in this horrific mess for the last 3 ½ years and I’m done waiting. God knows how long the NHS would take… if I’m not dead of old age by then. It’s going to take long enough privately, I’d hate to think how much longer it would take waiting for the NHS to do it. I’m still waiting for everything else, so I’m not hopeful. Hence the private request for a quote.

The experience itself was good – I got to test the chair and talk through the options with the sales advisor… However, what that person did not do was tell me what the options cost. They made it sound like most of it was part of the package, like choosing the frame colour. But… no. Very, very, definitely… No.

Be very careful if you do this yourself, they’ll get you into things you don’t realise cost you a huge amount, but are unnecessary. Like Black wheels for nearly £450… I mean, seriously?? Identical ones in Silver are part of the deal – but they didn’t tell me that, and I don’t think I would have noticed if I hadn’t been an anal Aspie data analyst who noticed one mistake (no, not the price! – an actual mistake in the order list) and realised there was probably something larger afoot.

Thus, I downloaded their “Prescription Form” from the internet, printed it out, then did a cost analysis from what she had added to the list and what I really wanted and really needed. I went full me – data analysis mayhem and data analyst extraordinaire… and I did not like what I found. And I was dumbfounded by how much I didn‘t need. Or even want.

The difference was nearly a grand… over £800 was added to the “prescription” and bill when it wasn’t needed at all. Like the black wheels previously mentioned. Stuff that for £450! – Silver wheels (included), with a cool Spoke Guards for “just” £113, is a much better deal and use of the money. If you’re going to pay an inordinate amount of money for something – it better be what you really want and need… not frivolous trinkets that are unnecessary. I didn’t need fancy wheels, or “compact” breaks, or a fancy Sideguard with a logo sticker (well, OK, that one might be needed, I need to find out more about this “Cold-Resistant” part of it, given where I live…), nor a lapbelt, or fancy footplate of carbonfibre. None of it was necessary – and if I was going to pay nearly £500 for fancy wheels, it was going to be the damned mountain bike ones, not for having them in sodding black!

When I was finished re-evaluating what I needed and hacking apart what she had written down, I got a chair originally billed to me at £3,227 down to £2,422 (including the pretty spoke guards) – or £2,309 without them. The base price (this was for a Quickie Neon²) was £1,645… meaning they had managed to double the price for the first bill sent, which – given you’re dealing with vulnerable and disabled people with probably little income – is terrible. When I added up only the things I really wanted it was only approximately £600 more – a lot, but not double the original price.

Of course, this would be better paid by the NHS – and given the amount of money I’m saving them by paying for my own treatment in home-based Ayurvedic medicine, and how much NI I’ve paid over the years – they should be damned well paying for it. But how long will it take, leaving me stuck the way I am, struggling and feeling like a worthless sack of shite in a wheeled cage?

The Sales Assistant even pointed out that I would be eligible for the chair under NHS Wales, but after so long, I’m reluctant to even ask… PIP utterly refuse to believe I need one (I’m wheelchair reliant outside and barely walk indoors, but only get Standard mobility even after they sent me a re-assessment form back in late January… and that was only after an Tribunal appeal!), why should they be any different? I don’t trust any of them anymore… they all want to save money, not actually help people.

Disenfranchised

I admit that right now… I feel genuinely utterly worthless. I can barely walk. I have to use walkers to get around the house, and a wheelchair to go outside. When I’m in the wheelchair I feel like a little old biddy, all curled up and caged in. I feel pointless. Stupid. Old. Unnecessary. The walkers make me feel like I’m 105 – despite covering them with nerdy stickers. I can hardly do anything myself and I need virtually 24/7 physical and psychological care (which comes from my parents). I need help for everything I used to do myself… and I just wanted to be at least able to get myself around by myself. It wasn’t too bad… but then everything went even more wrong. Again.

Since my conditioned changed to Paraesthesia [Fibro/Hemiplegic] instead of normal unabating agony, I can’t sit in it nor push my chair. I had to buy a backrest for £45 for it, to use along with a sacrum cushion I already had, so I could just sit in it without having to endure 4 hours of spasms just from sitting in it a few minutes. My hands become numbed and extensive Paraesthesia starts in because it’s difficult to push the chair now. I can’t do what I used to do. It’s just soul-destroying.

I need this new chair so I can have some dignity and independence outside. When I sat in that prototype I felt like I was just me. Just me. No illness, no cage, do disability. Just some cool wheels for legs and the ability to push myself without much difficulty at all. I pushed myself outside all the way down the road here – something very difficult and I’d never done it before. I could have even gone further than I did and come back without much problems. The wheels just went. It pegged it with so little effort from me. It was unbelievable. I couldn’t stop smiling at how much fun it suddenly was to go for a “walk” again! I did it all by myself and I was elated.

So… you can see how important this is to me. Getting it right is important – and the only way I would have those optional extras would be if I wasn’t paying for it. Even then… some of them are entirely unnecessary… I absolutely prefer the Spoke Guards over pretty black wheels…!

The fact of the matter is that if we have to buy this ourselves, my parents will be putting themselves hugely out of pocket, and that kills me with guilt. On the other hand we all have to consider my psychological and physical well-being… it’s not good for anyone to be housebound and inactive when there is theoretically no need for it. I’m getting bigger because I can’t go out and burn energy – and the few exercises I can do at home aren’t really going to make me happy, whilst I’m busy missing practising proper, full yoga and Pilates. I want to walk my own dog, so visit places, maybe go on a small holiday to the Lake District or Glastonbury (where all the cool Wiccan stuff is). I want the confidence to go out with friends – and my parents – without feel like a burden. I want to feel like this thing doesn’t own me. Doesn’t keep me in a cage or in pain/Paraesthesia.

I want my freedom. That just shouldn’t be optional.

But just try telling Jeremy [H]unt that… and his other Tory numbnuts colleagues…

Disfranchised… It isn’t a fun place to be at all. I had so much… and now I have nothing. Not even my freedom.

But maybe… One day… Well, you never know.