Time for data

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Over the last 3 months I’ve been steadily working to understand my injury. Especially the ways in which it interacts with being autistic and having ADHD.

We had a good understanding of my tailbone pain and my walking issues. One area we haven’t systematically explored is the exact nature of the pain and weakness in my sides. The pain is so impactful that we have focused on avoiding it. It feels like hot leather strips are burning my sides and then it progress to a sensation much like doing the splits.

The side weakness is the root cause of my walking issue. As my sides become tired my psoas muscle compensates which appears to cause the toe walking.

Our next step is to explore my sides and core to understand the nature of the injury.

The process is relatively easy. I need to use my gutter walking frame each day and collect data on how many steps I manage and how long I can move for before reaching a cut off point. We then need to see if that data changes over time. We need to identify if exercising the muscles in a structure way we can achieve an improvement.

The challenge is the pain. When using the gutter frame my sides rapidly become painful. The theory we have with the doctor is that the pain I initially experience is rapid lactic acid build up. Eventually it’s gets severe enough for the muscle to stop functioning which is when the ‘doing the splits’ style pain starts.

We don’t believe the pain indicates damage. Much like riding up a big hill on my bike, I have to continue through the pain. Doing so may trigger my body to improve the blood supply to my sides and in turn improve my mobility.

The muscle won’t be stronger as such. However the intense physio may allow me to use the strength I have for a longer period. Even a small change would be a considerable improvement in my daily life.

It’s going to be two intense and unpleasant weeks. The plan is to exercise every morning around 8am. Then shower and return to bed. Our hope is that I can recover enough in 24 hours to do it again the next day.

The timing is good. I have enough stability, support and routine to make this feasible. We had to have solid foundations before we attempt something so disruptive.

I’m not getting my hopes up. It’s nice that we can easily test a theory. If it works wonderful, if not we have explored and ruled out a possible explanation and were ready to explore something else.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
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