Category Archives: Mental Health

And The PIP Nightmare Continues…

Oh my… ********* !! I cannot speak! Buggers cancelled the damn PIP appointment 11:30am on the day, literally right now – was supposed to be at 3:40pm today!

Now I have to wait until next Monday (it’s Wednesday today) until the next one????

I mean, really, they no not understand how ASD works, and now I’ll be lucky not to have a meltdown… I can literally feel my brain imploding right now, and I might even actually cry… I really can’t even breathe…

I did not require this extra distress and stress on top of everything else! What is wrong with these people??! I really can’t be doing with another meltdown…

Oh, I’m so sad and confused now… I really don’t know what to do with myself  – my anxiety was already through the roof, and now it feels there is no number big enough to cope… I used to be better at it, but this/these illnesss(es) has now taken all that away from me, and I’m basically left as a panicking jackrabbit the entire time…

Ohhhh… … …

 


Chariot Racing & Revelations

So it was much to my delight – and immense relief – that I received my new wheelchair on 30th June 2017. This beauty was here to change my life. I really hoped that it would.

I took it out that very day to Penrhyn Castle, and found my favourite place ever (not in London) was about as un-wheelchair friendly as it gets… Very unfortunate, and immediately decided they had better change that soon. The next day I went out with best friend and had a great time wheeling myself about, “walking” alongside her and pushing myself all around and up to the top end (on a hill, over slanting pavements) of the High Street to a restaurant I wanted to show her. We also had cocktails and had a really great time out together since we both left London.

Then it all crashed. My Dad got quite ill for about a week just on that third day after, and I was once again stuck in the house because my mother was also working. Whilst my father was bed-bound, I was left to attempt to manage on my own – from somehow getting up in the morning (… or afternoon), taking my meds, getting to the bathroom and feeding myself. On that first day, the only thing I could think of was to get downstairs to my chair, whereby I would (effectively) have full mobility and at least have a fighting chance to look after myself.

For two days I struggled to do this. Thankfully this was the time my DVD came to cheer me up: Smile and Sway. It was a fun sitting-down dance DVD I could do in my wheelchair, covering moves from ballroom dancing classics, to ballet-arms, to Big Band swing and Jive. It was amazing fun to be doing something like that again – akin to a short rehearsal – and it felt great to be doing something so familiar once again. It made me feel more “me”… even if I was rather rubbish at it!

I was relieved from this strain a little on the third day as my mother was off work for the next few days. The first day she was off was terrible. The second day was much better. We (my mother and I) took Doggy for a walk to Bangor, specifically Porth Penrhyn, where there’s a cycle route that’s been beautifully remade and tarred, and perfect for walking a dog with a chair.

It took a little bit of cajoling but the dog eventually made it about halfway down the path. It was pretty hot (maybe 21ºC, perhaps a little higher), but thick trees make a great canopy over it, keeping it quite cool. When he finally started getting into it, Doggy started pulling my chair, and with my new lead kit (it was hands-free and tied around my chest, “Empire-waist” style), he started really running fast and far with me, which was utterly amazing.

On the way back to the car, Soul took off like a rocket. Exhilarating and so much fun, we went belting down the path, having a great time. My Dad has clocked him at 12mph when Souly’s running alongside him on his bike. I could easily believe he was getting there quite easily! We got back to the car so very quickly, I was taken aback when it was suddenly there.. and Soul was so very pleased to be back in the car so he could sleep on the way home.

Thanks to Souly’s speed, we also arrived home in time to see the tennis, which also pleased me.

 

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Pondering Internal Truths

After such a day, that night (well, early morning, I suppose), I read the rest of a book I had been reading: Unbearable Lightness, by Portia de Rossi. That book greatly affected me: It focuses on her eating disorder(s), then also on her recovery. Despite being probably around double my normal weight now (I refused to look when I was weighed, but at this point presumed it to be 13-14 stone – hopefully not more, that’s more than bad enough!), I still struggle with my eating disorder. It’s not about being painfully thin or vomiting food (been there, done that, still want to do the later…), it’s about disordered thinking about eating and foods. And I definitely have that. Always. But it’s not just about that specifically… it can also be about any illness and any recovery, or learning to live with it… Or without it.

She talks about her illness as a… relationship, a “boyfriend” of sorts. I thought about that… thought about how dysfunctional I felt in being my ill… Then (yes, it’s weird!) the thought occurred to me: Can you “cheat” on an illness? [Stay with me here…!]

I always feel horrid for wanting to… Write. Read. Play my games. Look at my computer magazines. Watch a movie. Well… What if I’ve behaviourally (though being actually unable to do these things) become indoctrinated, or “modified” to be… averse to them? That if I try to switch off and enjoy them, that I am being actually disloyal to “being ill”? That I’m cheating at being ill? Disordered thinking: Well, I know that is nothing new to me. I already have the brain of an anorexic, which is distorted thinking regarding something as natural as feeding yourself, so why not this? “Emotionally”, it makes more sense to me than anything else.

Of course, you can’t be disloyal or cheat on an illness, unless you’re genuinely faking it (choose your own crazy reason for it here!). But I guess you can feel it. Indulging in illness is a bad thing… but apparently my brain has yet to figure that out? If I don’t fixate and indulge on my illness and being inside that illness… then… what?

This is the Aspie Girl bit… and where the knowledge of this and the diagnosis comes in handy. Knowing as an ASD person, my brain is designed to fixate on things… a lot. It’s supposed to fixate on games, theatre or TV shows, movies, writing, books… Not on being ill. However, I have regardless been nothing but ill very ill – for quite a long time (four years is a pretty decent amount of time, really). Somehow, it came to the conclusion there was nothing else in the world – and although, yes, my condition continued to get worse, I was well aware that there were more interesting things to be obsessed about. Yet, there I was, in the middle of my fixation on, well, being ill. My IQ was crying.

Reading that book was like reading my own journal: The way she thought, her logic, her distorted thinking, the way the illness played with her mind, her logic… It not only made sense to me, it mirrored identically my own, all in exactly the same way, and I realised I knew what she was going to say before I even read it. Never before had I come across someone (despite it being via a book) that knew exactly what it was to be me, who thought like me, who knew exactly what it was to be like that. Thus, when I read her Epilogue about recovery, that also made the same impact.

The question of Can you cheat on an illness turned up on the back of what she wrote. It made me think of the fixations I have and I figured this was probably one of them: Somehow, being incapacitated had become a new one… And the thought did not make me very happy at all, with the question then becoming… How on earth do I fix it – Stat?

I came to think it had a lot to do with identity. I had been ill (as in unable to actually function or do anything) for so long, it had become my identity, and I couldn’t see past it to something else, even something I loved. It made it impossible to disconnect with “reality” and dive headlong into a fantasyland… In a world of pure imagination.

The only answer was to find a way to break it and get back to what I loved best – stories. In any format, whether in books, on TV or in movies, or in games. I wanted to learn again. Make room in my head for more interesting things than being ill. I was already ill… I hardly needed to work at it!

 

 


Independent Struggles

Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.

Yeh… It’s really not.

It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…

I’m certainly regretting being ill.

It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.

Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go  so the dog with shut up.

Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.

My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…

I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.

Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).

At least I made it to the bathroom after that, anyway. That’s definitely something very important!

I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.

So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…

I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well..  Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?

The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??

 

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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.  🙂