Last week, for the first time ever, I met a neuro-physiotherapist working in the NHS.

I’m just going to let that sentence sit for a bit.

I am 35 years old and have endured a neurological disability since birth. The one remedy I have been consistently aware of throughout that time is physiotherapy. I was in my 20s before I even knew that the muscloskeletal teams I had been shunted back and forth to for just a few weeks’ involvement at a time were not the specialism I required; what with mine being an issue resulting from brain damage and not a strain or a break.

From then until now, I have been repeatedly aware that the NHS, brilliant though it is, is not designed to support those with chronic illnesses or conditions. It is a reactive service and it has been a struggle to even understand what support it was I was seeking to get the best out of my body and as such, my life.

I have paid for years to regularly see a neuro-physiotherapist privately  and it was only when I asked the neuro team for some kind of joined up care that they asked if I would prefer to see the NHS neuro-physios to achieve this, or draft in my private therapist. I remember my stomach tightening as I envisaged my medical notes going missing or remaining incomplete. When I said I’d rather keep it all within the NHS, I was able to book an appointment within 2 weeks.

So last week, I made the trip to the city on the train and walked through the city centre to the clinic on the edge of the neighbourhood we’d lived in when Squidge was first born.

“How can I help?”

“I need to understand me; my condition, my body. Google is pretty useless because it’s full of jargon no-one has ever explained. Why it is how it is, what I can do to help myself.”

The neuro-physio was undoubtedly younger than me and I felt a little silly sitting there having to admit I didn’t understand half the words she would have been able to use with ease.

But she smiled and was patient and kind. She asked me to describe my pain and struggles and listened attentively. She was able to explain that I have high muscle tone, meaning that my muscles are always on. The messages from my damaged brain to ready my body for movement are always on, always coming. As a result, my muscles are overworked, tight and stiff. I felt a light bulb go off over my head. In one sentence or so, I understood why my muscles were always sore, why I tired so quickly and felt my limbs go heavy after so much was done throughout the day.

She talked me through exercises I could try to strengthen muscles she could see I struggle to engage, namely my glutes and my hip abductors in ways I actually felt like I could complete and get something out of. But she also said, carefully, that some of my capacities will be gone as a result of the brain damage and that it would be useless to pretend that these could be restored through effort or will alone.

No-one had ever been so…. truthful and frank with me before. Medical professionals have always urged me to complete my physio every day in order to be at my best. Which is a fair request that I must own I did not adhere to in my young adulthood. But no-one has ever done me the kindness of pointing out that my brain damage cannot be reversed if only I am doing enough.

She spoke of how in my early years, my brain’s pathways will have forged their way around the damaged area. It made me think of the two ends of a damaged electrical wire, sparking as the two ends touched again.

It is quite incredible to see the way my body can compensate. I overuse my arms and bum in distributing my weight and ensuring my balance. Those are the ways my broken electrical wire of a brain has created a spark of activity. It is not the done way, it is not graceful. But it is the way I have learnt, been taught and taught myself to navigate this body, these limbs and their possible movements. I can never hope to look, move or feel as you do, perhaps.

But I can hope to do my best for me.

I will be beginning Baclofen this week, hoping to relax my muscles that have clearly worked so hard for so long.

Then I will be able to report back to the neuro-physio clinic anytime I like within the next year for more support. Not just being shunted, but embraced.

Finally, a positive experience.