Maybe I Am Getting the Balance Right

Anyone who knows me knows that I am not particularly prone to giving myself compliments. But my very surprising, and to be honest slightly unsettling, takeaway from a lecture I heard this morning has led me somewhere rather different.

This morning I listened to a lecture by Dr Howard Schubiner on chronic pain management. It was sent to me by a friend I have met virtually through PSP, so thank you to them for sending it.

I expected to come away thinking about neuroplastic versus biomedical symptoms, whether the brain can learn and unlearn pain, and what any of that might mean for anxiety, fear, sleep or depression. I could easily have disappeared down a rabbit hole of science and debate.

But I am not going there, at least not today.

Instead, I found myself asking a much more personal question:

Am I actually doing well?

And, slightly unusually for me, I think the answer may be yes.

PSP is a horrific progressive neurological disease. I am not trying to think my way out of it. I live every day with its consequences, including pain, anxiety, fear, rigidity and poor sleep.

I honestly do not care exactly which parts are neurological, psychological, physiological, biomedical or neuroplastic. I am not a doctor or a scientist. I am a patient living with them.

What matters is whether I am responding as well as I can.

I have had severe, off-the-charts nerve pain, but medication is working and the side effects are under control. Rigidity still causes daily pain and discomfort, but medication, care, massage, physiotherapy, exercise, yoga and a considerable amount of stubbornness are helping me live with it.

Anxiety and fear are harder. Anxiety is hardly surprising when you have PSP and some idea of what may lie ahead. But I am learning. Music, writing, distraction, acceptance and simply giving myself space are helping me break the cycle more often.

Sleep still needs plenty of work. I get frustrated and angry about being awake, although my sleep hygiene is improving and I am slowly getting better at accepting that sleep may simply be different now.

But the bigger thing I realised this morning is that perhaps I am finding the right balance between determination and adaptation.

Determination keeps me going. I exercise, stay engaged, try to remain positive, use medicine when it helps and keep looking for ways to make things better.

Adaptation allows me to change. I use a wheelchair, accept help, adjust routines, try new equipment, listen to doctors and therapists, and remain willing to consider ideas that initially make me sceptical.

Too much determination can become stubbornness. Too much adaptation can feel like surrender.

I need both.

And perhaps I am getting that balance better than I normally allow myself to admit.

That was my real takeaway from the lecture.

Not that PSP can be unlearnt. Not that medication is unnecessary. Not that symptoms are imaginary.

Simply that I do not have to respond tomorrow exactly as I responded yesterday.

There is still plenty I want to improve. I want to handle anxiety better, sleep better, be less angry when I can and be a better husband and parent whenever I can.

But wanting to improve does not mean ignoring what is already going right.

Given the circumstances, I think I am doing okay.

I cannot quite believe I have written that.

Perhaps that is why I should keep this post for myself as much as anyone else. This is how I feel right now, and it is a feeling I have not had for a long time.

So, just this once, I am allowing myself a small pat on the back.

Maybe I am getting the balance right.