It’s been about 10 weeks since my body started changing. We’re past the initial period and we’re starting to get towards something more sustainable.
We’ve been working through things at a fantastic pace. I am surrounded by friends who are engineers and tinkerers. We’ve been busy getting stuff done.
I’m wiring this post as I wanted to document where we are so I can look back on it in the future. Perhaps it’s useful to other folks who are experiencing the same spinal cord injury I have which is called cauda equina syndrome
The changes to my body come in four areas. They are:
Mobility - My ability to walk and sit up are both significantly impaired. My middle and legs are weak and hard to control. My feet are often numb. However this is slowly improving and i am finding ways to move around.
Tailbone Pain - I have a constant pain in my tailbone / lower back which is like white noise. It varies in intensity depending on where and how I sit. My tail bone is also sensitive to contact. It sort of rings like a bell when touched or knocked. To avoid upsetting my tailbone I need to either lay flat or sit in reclined position.
Muscle pain - My small side muscles are doing a lot of the work holding me up. They don’t last long. Once tired they either go ‘floppy’, or they go tight. When they go tight moving my sides is exceptionally painful and has a similar feeling to doing the splits. I have a similar sensation in my legs if I try to use my legs to hold myself up and pedal a bike at the same time.
Brain Fog / Cheerfulness - Between the pain and general complexity of day to day life I get a lot of brain fog and I often loose my cheerfulness. Just because I physically can make my body do something, doesn’t mean I should. It’s very easy to end up in a massive grump due to the pain and frustration.
Here’s the fun but. After 10 weeks of working this stuff out there are a lot of things I can do.
Here’s a quick run through of what I can do and how we made it work.
Toe Walking - Depending on the day I can be pretty agile up on my toes. I bounce around the flat much like a toddler holding on to furniture and walls. I get tired pretty quickly and I try to avoid doing it too much… but it works. The toe walking will delay the recovery of a normal walk. However the toe walking has enabled me to stay in my own home so it’s a worthwhile trade off.
Bed / Sleeping - My bed is the only place in my life which is super low pain. I’ve worked out 3 position where I can lay in bed and ‘float’. The pain is present but it’s such a low level it can slip into the background and the brain fog clears. I am sleeping well which makes everything else a bunch easier. I am not ‘bed bound’ but my bed is where I spend almost all of my time unless I am outside.
Cycling - My mental health was a huge challenge when I was trapped inside my flat. With a massive amount of effort from friends and experts in adaptive cycling I have two different trikes! An adapted Pashly TRI-1 fixed speed trike for riding near my home and an ICE Adventure HD recumbent trike (!) for all day riding. I’ve also built myself a mountain bike with a good shape for my needs. I can sort of, kinda roll down hills on it. I knew I would survive, but when I got back out cycling I started to believe I could be happy and thrive.
Getting around / sitting - I can get around pretty well if we need to go the doctors etc. We have a large buggy which works pretty well. It’s the most comfortable place in my life after my bed. I also have a smaller buggy I can use as a desk chair. Sort of…
Washing - We have a special rotating bath sear which enables me to get in and out of the bath. Using it I can independently have a shower and a shave which is really important for my health and general wellbeing. It’s wonderful to feel clean and tidy.
Truck - we’ve modified the truck with a cushion and a special posture support harness. The cushion has a gap for my tailbone so it doesn’t get compressed and the harness holds me upright. This allows me to make lounge journeys with an acceptable level of discomfort.
Even if we made no progress from where I am now I think I’d be able to thrive. My day to day life is very limited compared to what I had before. But it works. I am comfortable and happy. We’ve found something which is kinda sustainable.
While what I have is probably sustainable. There are many barriers left to resolve and many areas we can improve.
The big four areas we are working on are:
Getting around / sitting - The trikes are fab, but they are not practical daily transport. The buggies are super useful, but they are not very good as daily seating. We’re trying to address both of those issues with a power wheelchair with a recline and tilt function. The local NHS wheelchair service have been wonderful. They will hopefully supply a power chair. We just don’t know when. Eventually I went to be able to go to and from my favourite cafe independent. Just like I used too.
Working at my desk - I need to get back to work. I want to be working. The biggest barrier is my desk. While the wheelchair will hopefully fix the seating, we need to sort out the rest of the ergonomics. We’ve made a start with a display upgrade from 24” to 28” so I can still read the display from a reclined position when using the buggy as a seat. We will keep experimenting. We just brought a new office chair which made tide us over till the wheelchair arrives.
Fluid management / Diet - I have little sensation in my bowels or bladder. It’s slowly improving, but it’s very tricky. We are putting a lot of time into structures, routines and tools to help me manage my fluid intake and diet in order to keep things comfortable and healthy.
Physio - The majority of our focus is on making things work with the body I have. However my body is changing. We are exploring more and more ways to improve things over time. We have a good understanding of what is wrong and we’re finding the right specialist physios to explore different options like bracing and supports.
After 10 weeks with cauda equina syndrone things are going pretty well. We navigated the initial challenges and have found a sustainable level of support.
My former line manager Gareth Ford Williams made a really good observation this week. He pointed out that I am more or less back to work… rather than using my research engineering skills to make BBC products and services more accessible, I’m using those skills to remove barriers from my own life and achieve my goals. It’s the same job just a different focus.
He’s right. This isn’t a good situation but i am having fun of sorts. It is joyful to discover new solutions and feel a positive impact.
I am still the same Jamie as before. My bikes have more wheels than they used too… I spend a lot more time in bed… but I am still me. My skills, identity and cheerfulness are intact and I am starting to thrive again.