One of the things that is difficult to get used to is being tied to a fixed location. I have carers in the morning and night and mostly this provides a routine that works well. I get up at seven each morning, taken to the bathroom and then showered and dressed, and then I go about my day before being put to bed at 8 PM. There is definitely something healthy in a routine of this type. Your body and mind appreciates the rhythm and the consistency, and generally I sleep well and cope with the day.
The real challenge is the fact that this routine keeps me tethered. It feels a little bit like being strapped to an elastic band. I can move around and have a certain amount of freedom but I can only go so far before the elastic drags me back home. I am a 40-year-old living under the constraints of a 14-year-old boy whose mother is keeping him under tight reins.
While I cannot cut the elastic band that binds me, I can untie it if I am organised. I can defer or cancel evening care “please mum, can I stay up late tonight?”. The morning is more problematic but I can arrange for carers in a different location. And if you’re wondering why Elly can’t manage me on her own, you just haven’t thought about it enough. There are just some things a spouse should not be asked to do! Elly is amazing and cares for me throughout the day, but I’m not sure our relationship would survive my morning care.
I intend to travel and stay with my family at Christmas and I think over time I will end up working out how to roam far and wide. It is early days and I am inspired by the exploits of those much further along the journey than me. Check out this guy, Rob Cook, who travelled 730 km in his wheelchair through the Australian desert before arriving in Alice Springs (see here). Puts my little adventures into perspective and reminds me of what is possible.