Week 1 roundup

Well, it’s been a whole week of freedom, and what a week it has been. I’ll start by saying that in no way has it been easy, but definitely better than the last few. It’s been a learning curve – quite an intense one if I’m honest – but definitely a good week.

Most of my time has been spent in my home. I guess I just need some time here, after all it’s a brand new environment as we had to move, so I need to learn about the place I live as well as about myself. I’ve tried to get into a routine, although that hasn’t particularly gone well. I’m trying to break out of the institutionalisation brought on by such a long time in hospital, and in order to do that there has to be a little bit of chaos in my life. I’m not complaining though. It’s been so nice to choose what I want to do and when, although I do still have to consider Sarah and Amelia. Speaking of Amelia, I’ve looked after her for a few times myself now and it’s gone rather well. One thing I did miss was reading to her on an evening, so I’ve had lots of chance to do that and I’ve made the most of it.

As well as getting to know the house, I’ve been learning a bit about myself and my needs and limits; boundaries can only be found by pushing them too far, so I’m trying to push myself as best I can. Saying that, I’ve been absolutely drained this week, which I put down to the change of pace and the relatively new environment. I’m sleeping much better in my own bed, despite occasionally losing a lot of space to the littlest bear…

I’m hoping to be assessed by wheelchair services soon, who are the people in charge of getting me a new NHS issue wheelchair. They’re not all the same and, although good, the one I currently have isn’t particularly fit for purpose. I catch my feet a lot, and have to reverse around the house quite a bit to reach somewhere big enough to turn around. I’d buy one myself, but until you need one you don’t realise the prices on these things… roughly £2k plus for a basic one, then hundreds more on upgrades if that’s the way you choose to go. One thing that seriously bugs me is that the whole disability equipment market exploits it’s captive audience so much, as everything is just so expensive. For example, a power-assist clip on device like the one I tried the other week would be around 6k if I got one to meet all of my needs. But that’s a complaint for another day.

Today unfortunately has seen me in bed for most of it, as I had a few angry looking marks on my skin when I woke up. I’ve got out into my chair a little bit whilst Sarah goes to the gym, but I’ll be sensible and rest up as much as I can. That said, I’m hopefully headed to the Sea life Centre tomorrow with friends, so we shall see what happens.

On a final note, I’d like to draw attention to a few friends of mine, who like me want to share their stories. One is a school friend who has an instagram account called diary.of.a.spoonie and she raises awareness of her conditions. Katie is an incredibly strong person, and I’m lucky to call her a friend. Check her account if you get time! Secondly there is a page on facebook by the name of Nick’s Last Steps, which really is worth a read. Nick and his wife Nicky run the page, which follows Nick’s journey through spinal injury and his rehabilitation following an extremely horrible car crash. Nick has had a lot to deal with but is incredibly upbeat and they are both just lovely, down to earth people with a story to tell.

Hopefully this week is as good as the last, although I’m not counting on smooth sailing just because I’ve escaped!,

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