A few people have asked me recently how I’m getting on with finding a wheelchair. The short answer is, terribly. I’ve been avoiding giving the long answer, because just talking about it makes me want to scream. But here goes.
Initially, things actually looked quite encouraging. Enable NZ happened to have a power-chair in store with the functions we figured I might need. I was able to try that, and a manual chair, within a couple of months. The manual chair is new and light and has a fancy honeycomb cushion. The power-chair goes up and down and back and forth and fast and slow and is very nifty. My technician estimates it’s probably worth about $18,000, which is pretty generous for public funding. But neither are worth much to me.
At the moment, when I use either of the chairs for a decent length of time, my pain levels shoot up. Not only is the pain more intense, but it spreads further into my head and neck, and it lasts for longer. I don’t know exactly why, but something about the positioning and support (or lack thereof) just doesn’t work for my body. I’ve explained this to my OT and physio on numerous occasions, but they always just make me feel like I’m being fussy. Like I’m asking for chorizo instead of mushrooms with my big breakfast. They don’t seem to understand that if the chairs cause additional pain, they don’t meet my needs, and they’re not worth using.
The DHB did order a new backrest and headrest for me to try, but when these weren’t successful, they weren’t willing to keep looking for other, more suitable products. When I make suggestions from my own research, the answer is always “that won’t work”; but no-one seems interested in finding a solution that will. There has been very little analysis of my posture or musculature, and zero thought about what might exist beyond this one power-chair, which has proved over and over to be unhelpful.
Having a wheelchair that supports me adequately would open a whole range of opportunities for me. It would mean that I could commit to social events and voluntary or paid work, because I’d know that I could sit for a while in any location. I’m sick of turning down offers and leaving early and desperately looking for walls to lean my head against. I’ve been in the system for eighteen months, and it feels like I’ve spent most of that time in the too-hard basket. The hospital should be trying harder and thinking much much smarter to find a solution.
Why can’t we be as good at serving complex health needs as we are at serving brunch?
This thing's got legs 