Homely updates

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I’ve been writing lots in recent months about stuff like the buggy, bikes, trikes and getting around.

I thought it would be worth a post to catch up on a few other things relating to home and environment.

Moving out?

The biggest thread about my home right now is the housing itself.

I’ve really enjoyed having a flatmate for the last few years. Seeing him thrive and knowing we where able to help has been brilliant. It’s also nice to have some company.

However with my injury it’s much much harder for us to share the flat. There’s just not enough room for us to do what we need without tripping over each other.

This was an issue during lockdown with work environments & focus. These days it’s even more intense. Neither of us feel meaningfully in control of our environments as they constantly overlap with competing needs.

The plan is to find a new home. We’re looking for a house to convert in such a way that we don’t have to move through a shared space for things like bathrooms and we each have separation between where we work and where we sleep.

New home will also have all of the various adaptions I need for moving around safely.

The biggest barrier right now is money & availability. We’re waiting for the right property to come along and I need to save up some money towards it.

Seating, eating & playing games.

I’ve been struggling to find comfortable seating ever since my injury kicked off in February. The initial pain was so high any movement resulted in screaming and occasionally blacking out from the pain. (Damn cat scanner!)

Our first big success has been the red buggy. It’d extremely comfortable and it’s become my all purpose chair.

I probably spend ~4+ hours strapped into it everyday. It’s where I eat, work, play games etc.

However it has some flaws. The same snug secure feeling which makes it so brilliant when we’re out and about can make it very complicated to use day to day. There’s a lot of faff with the straps and harness and it’s hard to access when it’s tucked under my desk.

We know the buggy is comfy so we’re using it as a template. Looking for other types of seating which have a similar shape.

We’ve been talking to various suppliers around adaptive chairs and different work surfaces. We’re also looking at making something ourselves.

The biggest constraint is space. Most of the options are very large and simply don’t fit into any of the rooms I have available.

We’re going to keep experimenting and see where we end up. One of the current experiments is a big bean bag I can stick in the middle of the floor for gaming or watching TV in my bedroom or the lounge.

I’ll write about this topic more in the future :)

Evolving injury

For the most part my injury is stable. Sort of. Good days and bad days, but generally within fairly narrow range. Some areas are improving, just very slowly.

Recently I’ve started experiencing some new issues with my right hip and other joints. I’ve found myself trapped in bed or falling over and being unable to get up. We’re working with the Drs to understand what’s going on and hopefully find a fix.

One of the challenges of CES is the indirect impact. It easy to pick up new injuries because CES has changed the way I move. 8 months in we seem to be seeing some of the early signs.

It’s not great but at least we’ve caught it early and we can start doing something about it.

New support

Another area where we are working to sort out new options is around support. A new support person / babysitter has started working with us.

Their role is to fill in lots of little gaps in my support and to eventually help me get places.

It’s extremely slow to get comfortable with new people so it’s going to take a few months before we’re ready for adventures. We’re doing a short session each week to get started and will do more sessions as the relationship builds and we’re more able to predict each other.

Final Thoughts

This update is a bit of a hodge podge of things. The main thread is that we’re always iterating and trying to find new ways to do stuff.

My life is pretty complicated. There’s lots of moving parts and it can get a bit overwhelming and frustrating.

However we’re making it work and I am thriving.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
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