Category Archives: Soul the Dog

Getting Ready for PIP… Again…

It’s the day before PIP: Take Two

I was nerve-wracked before, but now I’m just mad. My 2 large packets of paperwork are ready. I have everything I can think of set – frankly still basically in place since last week – and I’m ready to be irritated and bored by an inebriated idiot who probably doesn’t know much… if they’re anything like that last one I saw, that is.

After the cancellation of the last one, my life went crashing into a tailspin, exploding into all kinds of awful things. It’s basically been a living nightmare for the past five days, and I can only dearly hope that with this finally over with, I can relax a little and get on with still learning how to walk with wheels.

Yesterday, it got a little better… I went to see my sister in Southport and had a good time wheeling around and chariot-racing with the dog all along the prom, gardens, and down the pier – it was definitely something the people of Southport had not seen before! It was a good day out that was more like “me” and I was able to be pretty much completely indipendent, or the dog helped me out. We all had dinner together in the evening in a lovely place called the Fisherman’s Rest, then made the long journey home.

It was the first time in a very long time I’d had a long, successful and fun day out somewhere. It was also the first time my new chariot – my Firefly – had been on a big outing, and she did very well, and I’m really pleased with her. That paid it forward to today, where I had a fairly relaxed but active day. I have much more confident in my little Firefly, and I managed to do a scary thing (which normal people don’t find scary) – which is to see my cousisn’s little baby. Babies scare me, so to meet one, see one, hold one, as a practice before becoming an aunt for the first time, took courage. With my Firefly I had the confidence to do this, and met the baby and her three-year-old older brother… who’s a little maniac and so fun to play with!

To end my evening, before having to face the long night ahead before this awful thing tomorrow, I watched the movie Hidden Figures, which completely blew me away – especially since the story was based around real people and things that really happened. It was terribly inspiring, shocking and heartbreaking, as well as utterly astounding and amazing… and I love the fact it literally took a woman to get a man into space – and to the moon.

To see other women work so hard to trailblaze their way into computer programming, aeronautical engineering, Astro-physics, complex mathematics, over 50 years ago was simply amazing. It was also heartbreaking to watch the horror of segregation they had in America back then… As a Londoner living amongst everyone in a melting-pot, it’s simply unthinkable. As a girl who was never encouraged at school to push for maths or had an opportunity to study computers, to see those who had gone before burning their way into this world right at the top, it’s so encouraging, helping to feel like there really is a place for me in such a world. I’m no savant genius like they were, but I’m capable, and got jobs in IT people that far more “qualified” for it than I was on paper were overlooked for. Being able to do it without formal training is pretty lucky – and then I also get to thinking what I might have been capable of if everything that occurred, well, hadn’t.

In a way, because of the last couple of days, I’m going to this appointment feeling a little more like myself again. I’m relieved at that I will have this form on control – I have dyed my hair, I’ve been out [properly] for an active, full day-out for the first time, and I’ve had good and nutritious food, and I’ve had a far more relaxing night than the last time. I do feel like I’ll have a little more control when I go, at least… so I hope that is something in my favour.

I’m not happy about going at all, but at the end of the day I’m hugely worse than I was when I first ever saw PIP, which must be nearly 2 years ago now. Their original assessment no longer stands, so they really should be documenting that… if they possibly can… I think it’s quite clear what level of esteem I have for these people!

… So… Wish me luck!

 

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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!