Wednesday, 18 January 2017


Hello my lovely loves!

It's been a little while since I've written a post, rather than just basked in the reflected glory of Tiny Hannah, so I thought it was time to get back into it.
(Tiny Hannah is still off on her grand tour of America and Canada by the way, so if you were hoping for more photos, don't worry, there'll be plenty soon.)

As I've said before, New Year's celebrations have never really been my thing, but as the terrible monster of 2016 finally died it's death, I've felt a new kind of... determination settle over myself, and it's caused me to actually want to set goals this year.

Christmas went well, I managed it so much better than last year, and I just feel a bit more stable in my condition.
Although, I'm not sure stable is the right word: it’s more that I've learned what things are liable to cost me, accepted that cost, and started to trust that those costs will hurt, but that I will get through it.

It's odd really, as I had to spend the end of December and a fair chunk of this month filling in my ESA work capability assessment form, which generally involves telling strangers (and fronting up to) just how bad things are in comparison to healthy people.
Frankly, it's ripping yourself open, pulling out your insides, and rooting through; working out exactly how bad everything is for you and focussing on everything that you normally try not to think about, in an effort to keep positive.
It's a deeply depressing process, but somehow, afterwards, when I'd seen just how hard things are, written in black and white and capital letters, it made me realise that I'm a lot stronger than I think.

One thing that it's also made me aware of, though, is where I need more help.

Approximately two years ago I went through the process of being assessed by an Occupational Therapist and being awarded an upright wheelchair with a headrest.
I expressed concerns at the time that I wasn't able to sit in an upright chair, but the wheelchair service would only (and probably could only) offer me an upright.
It was only through my stepdad calling them afterwards, and reiterating my weakened muscles, that we were able to get the headrest added to the chair.

I didn't have the strength to fight further, was worried and guilty about taking up funding for someone worse off than me, and barely knew what other options were available anyway, so I accepted the chair, even though I knew it would take me months to be able to sit in it. Or so I thought.

I've had that chair (who I nicknamed Gavin) for at least two years, and I've used it a grand total of once. That was during the Doctor's Trip Debacle of 2015, and we all know how long it took me to get over that.
I can sit in the chair for about 30-40 seconds before I start to feel my back muscles lock and strain.
In short, instead of being an aid, it's just another mountain to climb.

There's a small grassy plot in my cul-de-sac, and it's about twice as far as I can comfortably walk (not counting in the emotional and psychological factors of Being Outside).
Without any aids, there's a very small chance I might be able to make it over to the grass this year, but I'm willing to bet the Payback involved would not be fun, and that would make it a very rare occurrence indeed. And that's if I didn't have a crash mid-excursion.
If I had a reclining wheelchair, however, I could make that journey in a matter of weeks, with considerably less Payback, and likely do it reasonably regularly, rather than once or twice a year.
Guys, I could leave the house.

It's been nearly two and a half years; I want to leave this house, and I want to do it this year.
So, my new sense of determination is going to be channeled into getting a reclining wheelchair.My Specialist Physiotherapist from the ME service has backed me up, and has put through a request for referral to the OT team again.Hopefully the wheelchair service can fund it, if not, there's social services. If not social services, there's charities. And if not charities, there's crowdfunding.

I will find a way.

I’m ready. Let’s blow this popsicle stand.

1 comment:

  1. I know you'll find a way to make it happen! I'm in full support of your blowing! :D