Over the last few months we’ve been learning heaps about my body. From both a medical and physiology perspective.
We’ve noticed a pattern of tightness and looseness in my hips & legs and talked to the neurologists about it at a recent appointment.
Combined with some data from a nerve conduction study it suggests a different answer to what’s changed in my body over the last two years.
The theory is that the pain and mobility issues we’ve been working through are caused by a series of muscle spasms happening in my spine and neck. The spasms cause a heap of pain & mess with the nerves in my spinal cord.
It’s a theory we can test by starting a treatment using epilepsy and nerve pain medication.
If the theory is correct then the meds will interrupt the cycle of spasms and stop the pain. Beyond side effects like being very tired and a bit of brain fog, the main downside is we believe it’s the spasms which hold me up. In other words when I take the new meds i am probably going to get wobblier for a while.
When the spasms have stopped we can see what state my muscles are in and get to work rebuilding them.
We don’t know what’s possible. The doctors think I will at least get back to the mobility I have now within 6 months or so.
Perhaps it will go further and I can regain some of the mobility I’ve lost. Either way, the pain should stop and I will be more comfortable.
The meds may also impact my speech. We’re not sure but it’s a known side effect and if it happens I’ll just end up using my AAC apps more.
Being more wobbly again is a bit scary. I’ve only recently found a good balance of support and adventure. It’s going to be tricky to be more wobbly and still retain my autonomy and independence. Even more so if my speech is more limited.
It helps that we know it’s coming. We have lots of good tools and we have an effective process for identifying and fixing barriers.
In the past we’ve used the ‘toddlery’ or ‘little’ lens to great effect.
Simplify my life as much as possible and make the most of the things I can do. Embrace the things I find joyful and use the tools which bring me joy. We avoid the medical aesthetic in favour of someone safe, soft and cosy.
We’re keeping with that approach. It’s worked well and it’s something we can build on.
I’m approaching this entire thing with optimism. There’s a lot of potential outcomes and most of them are good.
The last 21 months have been surreal. It took a long time to accept how my body had changed… it’s even more surreal to learn the changes might be reversible. Even if it’s just the pain or small changes to my mobility.
I focus my life on adventure and play. This is a new adventure. We’re starting the meds in the next week or so & from there we have to wait and see what happens.
Overall I am excited and optimistic. There will be some scary and hard things ahead, but I will be okay. We’ve been here before and we made it work. We’re surrounded by amazing people who are happy to help.
The only way forward is through it. I can’t wait to get started.
