Long time, no write.

*shamefully inches back into the blogosphere…*

I knew that I’d not updated this blog in a very long time, in fact I started it with good intentions and then it kind of stalled. I was still rather shocked when I finally forced myself to log back in today, and realised it’s been almost a year since I’ve actually posted anything. 😱

I would say a lot has changed in the past year, but in comparison to an average person’s life, it really hasn’t. In spoonie terms, things are somewhat different for me though.

Health-wise, I’m in a rather different place. This time last year, I was experimenting with cooking more fresh food for myself, and in the year since leaving hospital (Autumn 2016), I had noticed a significant improvement. Unfortunately I’ve taken a bit of a step (roll?) backwards now. I have much less energy than I did a year ago, and whilst my flare ups aren’t as severe in their symptoms now I’m learning how to avoid the triggers, it does mean I spend much more time in bed and move a lot less. After a particularly bad period starting in December, I’m much weaker and although I’m slowly getting some of that strength back again, I’m still finding things quite challenging.

At the end of August last year, I lost my feline companion of 15 years. He’d spent the last 2 years of his life living with my Mum & Sister whilst I waited for a home I could bring him back to (no pets allowed at MLM, and I would need access to surfaces to feed him etc). I was lucky that I got to spend a week with him before he went to sleep in my arms, but his loss affected me enormously. I’m sure that the decline in my health can be at least partially attributed to losing Billie Joe.

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Billie’s Ashes & Photos next to my bed.                                                                          [Image description: Three Photos in black frames above a carved wooden box with “BILLIE JOE” engraved on an attached brass plaque. The central photo is of a black cat sat on a windowsill; the left photo includes a white woman with blonde hair and glasses, wearing a blue top, sat with the black cat on her lap; the right photo includes the same woman, younger, with brown hair and no glasses, wearing a denim jacket, holding up the same cat as a kitten.]
With the decline in my strength, I found I was getting out less and less because I could no longer lift my manual chair into the car. Although it’s a very lightweight chair, the rigid frame design (which is how the lightweight aspect and easy manoeuvrability are achieved),  means having to lift it over my body and onto the passenger seat of the car. Without some semblance of upper body strength, this task becomes a personal Everest.

So…I present Salazar! 😁

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                                          Salazar the Powerchair.                                                                                 [Image Description: A Powered Wheelchair on a beige carpet with an open door into a kitchen in the background. The chair has a blue base and grey wheels with a black leather seat. It has a headrest and two armrests with a joystick and controls attached to the right arm.]
Purchased in March, the powerchair has given me some of my independence back again. Although I can’t transport this chair in the car. I can get out and about locally, utilising buses and trains to make trips out much less spoon-heavy. Previously I had to get into the car, load up the chair and drive just 200yds around the corner to get my hair done. Now I can whizz down to the salon and then pop to the shops for a couple of bits if I’ve still got the energy. I can also get my nails done or meet friends for coffee in town, which is on my doorstep but I hadn’t been able to make use of because it wasn’t accessible via car.

I also discovered that I can take my friend’s dog out for what I call ‘rolkies’. We tried clipping her lead to the powerchair and she happily trots alongside or ahead of me. I don’t get to go out with Penny as often as I like, but when I do it gives me a boost. Fresh air & doggy fusses can do wonders.

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                            First Rolkies with Penny.                                                                        [Image Description: A white woman with glasses & blonde hair in bunches, wearing a black cape, blue jeans and flowery ankle boots, sitting in a powered wheelchair. Attached to the chair by a black lead  & running ahead is a golden Cocker Spaniel. They are on a grey pavement with a green fence in the background.]
So that’s where I’m at now. We’re no further with getting any housing sorted and I’m still waiting for the ‘urgent’ counselling I was referred for in Jan’17, but I’m still trying to make the most of things on my good days.

Now I’ve taken the first step and actually written a post again (I’ve been side-eyeing the laptop for weeks again trying to motivate myself to write), I hope to actually keep up the habit this time. My mind constantly whirrs with thoughts I ought to get down, but the fuzzy muzzies take over and I can never seem to get fingers to keyboard.

Until next time (which hopefully definitely won’t be 2019!)

A

XX

Tl;DR – My health is worse than last year, my cat died, I bought a powerchair, I occasionally steal my friend’s dog to cheer myself up.

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