Tag 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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Going Solo

Pain is exhausting… and troubling. It’s now my worst enemy, and today I am facing it alone.

I have an appointment with a physiotherapist to discuss Hydrotherapy today. In two hours. My cab is now booked, my appointment is for 1pm. My friend was supposed to be here with me to help – I am not anywhere near ready to go out somewhere alone. Yet today I must somehow do so. She has an interview today, a last-minute request for a job she wanted – in Wales. So she left yesterday to be ready for it this morning.

I have been alone so far for 24 hours – but that’s not really the problem. The problem is that having to do things myself hurts. Too much. Far too much. So I go without, I avoid, and I do not do anything that will make the pain worse. But today… today I have to do the exact opposite.

I must somehow manage to endure the pain and go to this appointment alone.

 

Solo Expedition

All Stressed OutI am daunted. Overwhelmed. Scared. I’m sitting here, with the Dragon Age Inquisition [PS4 game] launch window that plays the gorgeous symphonic theme music on a loop, over and over again. It’s comforting, soothing, a noise I know well and gives me strength and calm (operate conditioning: it’s how I feel when I’m playing the game, hence it makes me feel the same when I just here the music). I feel rather… trapped. Like a rabbit in a corner that knows it’s going to be done in, and is just waiting for that moment to come, trembling in that corner and just… waiting.

I have never been out on my own before – not since this happened. I don’t like going out anyway. Add this to the mix and I’m borderline terrified.

Somehow, I must prepare my own wheelchair, then get it out of the house (aka tiny flat that the wheelchair doesn’t really fit in) on my own, and over a rather tall hump where the front door frame is quite raised from the floor (I’ve tried getting it over it before, and it’s excruciating and such a difficult to do). Then I have to get it and myself out to the cab. Get in the cab and get to the hospital. Somehow then take myself in my chair all the way up to the physio department. Have my consultation. Then do it all again – backwards.

 

I can only prepare so much, but I’m doing so. I’ve taken Pregabalin, Devil’s Claw, and my joint pills. Just before the can is due I’ll take the 8mg co-codramol (I can’t take anything stronger). And that’s it. There is nothing more I can take. The rest is mental and emotional willpower alone. And my innate stubbornness.

I must try and remember this is no gauntlet compared to what else I have faced in my life and this awful pain I will endure will still be nothing in comparison… Although, that is difficult to remember whilst going through it all. But what is one more crucible when you’ve already had several?

 

It doesn’t help that I was already in a lot of pain this morning – today, the shoes my friend wanted for her interview came… after she left for it yesterday. They came at 8:30am – whilst I was still asleep. I realised it would be the shoes, so I gritted my teeth and dragged myself up on my own (I usually am helped to prevent so much pain), with my stick, and put on my dressing gown and went to answer the door. By the time I then got back to bed, I was in too much pain to sleep anymore or rest, but I couldn’t get up until I had psyched myself up enough to endure the pain it would take to do so.

I couldn’t make coffee and I had to wait until the Pregabalin kicked in… so I didn’t have any until way after 10:30am. It’s already been a nightmare day before it even starts.

Now I have my appointment to look forward to.

 

Uneasy Wait…
Soul on beanbag

Soul

Even Soul (the dog) can feel something is very wrong. He’s lying next to me whining and then trying to play with me, chew me (he’s a Staffie), rolling on his back with his little tail wagging madly, and licking my face, trying to cheer me up. Poor guy doesn’t understand why, but he certainly knows things are just not right.

My head aches, my mind burns, my bones ache. One coffee just isn’t enough… but choices must be made, and I must choose to not inflict more pain than necessary, if it is going to cost me more than I am willing to handle. If I am early enough, perhaps I can get something from the shop/cafeteria or whatever they have there (although, it’s not the best hospital for any services, least of all food – in fact it’s one of the most under-funded hospitals I’ve ever seen, and I’ve been to/worked in many).

It is now just half an hour before the cab comes. I must get everything ready that I can… And I really hope I am physically capable of doing this, even if it does inflict pain. As long as I am physically capable of this, I will manage… unfortunately, the reason I am going is that I am not physically capable of much and require hydrotherapy to support and strengthen me again (with less pain, thanks to the warm water). The idea is you go to hydrotherapy first and then do stuff like this, when you’re stronger. Not the other way around.

I said before Asperger’s and pain do not mix well together. Well, now they’re downright exploding like domino-effect multi-detonations. I’m about two minutes away from a panic attack and subsequent meltdown (hence writing this to calm me and make some sense out of it, and the repetitive gorgeous music from my joint-favourite game). I’m alone with no one to help me… well, no one human. And if I didn’t have Soul here to comfort me I would be in pieces without a doubt.

Now I must go and prepare… and pray that I can somehow make it on my own.

 

Focus On Your Strength

Focus On Strength

 


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