Today marks 131 days since my first hospital visit for my spinal cord injury. It’s been a wild time, with constant change and evolution. During the last 30 days the pace of change has increased further.
Here’s a little update on all things Jamie.
The most important thing to me is riding my mountain bike. In the last month we have made extremely encouraging progress working out what I can, and can’t, do on a bike.
I’ve been to the bike park a few times now on a range of different bikes. On my adapted bike and with careful line choices, i can ride the downhill only sections of one trail very well with minimal pain. It’s exceptionally painful pushing up or pedalling, but it’s pretty comfortable to ride down something stood up. I ride for 2-3 minutes at a time and then need a lift back to the top.
On an ebike it’s completely different. I can ride around for a few hours. Exploring the whole forest. Standing up when riding downhill and sitting down to the pedal. It works very well. So much so I am working with a friend to get an ebike of my own as a long term hire. Its very exciting
However, compared to normal bikes the ebikes have one downside…. Pain…. Pain that lingers for weeks….
For the first 16 week or so of my injury I did everything i could to manage my tailbone pain. That’s the pain which makes it difficult for me to sit up in chairs / sit down on bikes etc.
Unmanaged I get very brain foggy. With practice I managed to I kept it around 0.5-3 out of 10. Lower was the goal.
The issue is it’s extremely limiting to live that way. Laying down for 23 hours a day. Even if I use the little lens and have all sorts of cosy things and a cute soft environment… it’s still very difficult.
However i am now choosing a different strategy. I am choosing pain. With a baseline pain around 3/10 I can do more things. Each day I choose the thing I want to do which will justify the pain for the day. It could be as trivial as hoovering (!) or as meaningful as a ebike ride with friends
Some days I don’t choose the pain. On those days I aim for a very relaxed, gentle and floaty day. A good day for play.
I have to be genuinely happy with both options (pain / less pain) for it to be a real choice. I am still working it out.
Interestingly, with the pain higher, but more consistent… I often notice it less. I am curious how this will evolve with time. The pain does tax my energy. Most days I struggle to be awake more than 12 hours. The tailbone pain is often the last sensation I have before I sleep and it wakes me up most mornings.
I’ve restarted all of my major routines and also started evolving new ones.
My evening routine is back and we’re having it most days.
A key part of my recovery is exercise & physio everyday, so I am also putting together routines for that. It includes things I can do independently (ebike ride around the park) or things I can do with support (trike ride / swimming)
Everyday starts with some form of exercise. It has too or my recovery will stall. It’s painful, but it should lead to a good result in the long term.
If I choose the pain then I can walk sort of kinda okay-ish-ly with a stick. I can’t walk far, but I can walk far enough to do some things.
Combined with other forms of mobility (like the little ebike I am borrowing from a friend) it’s very useful.
The other day I ebiked to the cafe with my friend, walked in using my stick, brought us lunch and then ebiked home. An amazing amount of autonomy considering how little I can walk.
We have a partial solution for now. I’m going to need a wheelchair of some sort eventually.
To end in a positive note. It is positive. Trust me.
I am starting to experience the first signs of depression. Especially on days when the pain wakes me up and I don’t have ADHD meds in my system.
I’m not alarmed by it. It’s not exactly welcome but I don’t fear it. Given what’s going on I’d be more concerned if I wasn’t experiencing something mental health wise. It’s all part of processing the grief.
I have a great working relationship with an ADHD specialist and we’re going to chat later about the depression. I’d like to identify the threshold for when treatment would make sense. I don’t think it’s needed yet, but It’s good to have the tools ready should I need them.
Life is not easy with a spinal cord injury if any type. Life is not easy being autistic. Combine the two and it’s all sorts of fun.
However we’re finding a way. My intense interest in mountain biking is proving to be valuable. It’s what drives me through all of the pain. I am choosing much higher pain all day everyday in order to enjoy riding bikes again.
I am more or less happy. I’m being bold and pushing for the life I want. In my own way I am thriving