Gosh damn. Time flies when you’re having fun… it took almost 2 weeks to write this post.
The last few months have been good. The new support routine stuff is coming together nicely and there’s lots of other positive things starting to sync up.
The combo of bedroom and separate playroom was working really well for me. After the tweaks we made back in August, I was feeling safe in the playroom and generally finding it easier being home alone.
While it worked well, space was still an issue. When support folks visited or stayed the night they didn’t have a great place to be. Plus I wouldn’t have room for my flatmate to potentially return in the future.
With that in mind we started looking at how we could improve the lounge. Taking what we learnt from the playroom and applying it in the lounge to try and create a cosier and comfier space.
The biggest change we made was flipping the room layout. By swapping the side the sofa was on, we created a more contained space which felt much nicer. Like with the playroom, we protected the TV with a ‘surround’ made out ot bookcases. Putting the TV in a protected spot reduces the chance of me breaking something if I fall over. It really helps make the space feel safer.
Having the lounge space led to other experiments…
With the lounge replacing the playroom, I needed to find a way to use my Mac at home. I’d built a DIY desk around the squishy blue chair when it was in the playroom and applied the same technique in the lounge.
I’m using two DIY desks in the lounge.
The first is a ‘floor desk’. I essentially put a bit of wood between two ikea cube boxes and use my ‘floor sitter’ cushion to protect my tailbone. I then use the TV as a giant monitor.
This works well for a quick sit, but without the lateral support the soreness and fatigue builds quickly.
The second setup is the same basic idea (some wood and ikea boxes) but it’s higher up so I can use my squishy blue chair & harness. It works well for when I need to sit for a long time, or on days when I’m extra wobbly and need the lateral support.
I’ve learnt that variety is everything when it comes to my body and seating.
The two DIY lounge desks work alongside the other seating options I have such as the buggy, the beanbag and the various ways I can use the squishy blue chair in my bedroom.
The lounge is working well and I’ve started freeing up the playroom to make a guest room.
The final part of the puzzle is getting outside more. Both with support and on my own.
With the squishy blue chair at home and the DIY desks in the lounge, the buggy isn’t needed in my flat most of the time. It’s been freed up to live in the back of the car ready for adventures. Getting out the door is much smoother and easier. It’s a small change but it’s having a big impact.
Sometimes the most impactful things come as a surprise. One thing may enable something else in a way we didn’t anticipate.
For example, I’m doing more each day because I have the blue squishy chair for reliable recovery. I can move all day, then recover in the squishy chair in the evening.
I’m slowly finding ways to visit the cafe more often and for longer. It’s slow progress but it’s all going in the right direction. I get some if my best flowy attention tunnels at the cafe.
Something else we have been exploring is the impact of different things on my hips.
Depending on how i sit, move & rest; my hip muscles feel tighter or looser. It’s sorta like walking on a different set of legs everyday.
This is a common part of cauda equina syndrome. Stabilising and controlling the hips is a critical step in getting on my feet and walking… It also makes riding a bike much easier :)
I can influence it a little with deliberate decisions. For example riding the ebike with the seat up high & low assistance makes the hip tighter. Do if for too long and it gets too tight…
Riding the ebike with the seat low and power high works will loosen the hip. Do it too long and if becomes too loose and it’s hard to stand.
It’s all related to the muscles around my lower back and how they control the geometry in my hips and legs.
There’s a bit of a trade off. If it’s all very loose it’s much more comfortable, but harder to walk. As it gets tighter I can walk better, to a point, then it becomes sore to keeps my legs straight.
As we understand my body more we discover more options and ways to improve my life.
Life is pretty good right now. I’m still doing a lot of nights home alone and that’s impacting my energy a lot.
However it’s getting there. Back in May I had 6-7 spoons a day and most days at the moment I have 3-4.
I’m getting into a fairly decent 4 spoon groove. I’m keeping up with all the important stuff each day and I’m getting enough done to maintain my income.
The new lounge design, DIY desks, different seats, cafe adventures and whatnot are all tools to help me thrive.
We are always working on creating better tools. Iterating away, slowly slowly improving things bit by bit.