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I feel great!
This morning I decided to look back over the last thirty days of blog posts I have written. There were 59 of them. I thought I would simply be reminding myself what I had written, but instead I learned a great deal about myself and about my battle with PSP. Oddly enough, I came away feeling genuinely excited because I think I now understand this beast a little better than I did a month ago.
There were plenty of posts on important subjects such as feedback from carers, living alone with PSP, sleep and my Guide for the Newly Diagnosed. But looking back over the month, two discoveries stood out above everything else.
1. Windows of Time – I Need to Stop Thinking in “Days”
One of the biggest lessons came from Windows of Time and several related posts.
The traditional “day” is no longer the right way for me to think about my life. My life is now measured in windows of time. I have far less energy than I once had and those periods of energy are becoming shorter. Rather than fight that reality, I have decided I need to embrace it.
My plan now is simple. Rest more. Sleep more during the day when I need to. Recharge properly. Then make the very most of those windows when I feel more like myself.
Whether that means playing chess, writing, seeing people or simply getting out of the house, I think I finally have a much better understanding of how I should be living with PSP rather than constantly fighting against it.
2. From Stress to Anxiety
The second discovery surprised me even more.
I am anxious. Seriously anxious. That is new for me, and I now realise that my biggest challenge is not simply PSP itself, but learning how to deal with anxiety.
Looking back, so many of my recent posts have really been about uncertainty. Thinking them through has given me enormous clarity.
During my career I lived with significant stress. Deadlines, responsibility and pressure were part of everyday life. Looking back now, I realise stress and anxiety are completely different things, and they require completely different ways of dealing with them.
The biggest problem is that I am a control freak. I like understanding problems and finding solutions. PSP doesn’t work like that. By its very nature it is uncertain. Every new symptom raises new questions, and often nobody can tell you exactly what it means or what happens next.
That uncertainty breeds anxiety.
So I know I need help. Therapy. Medication. Music. Yoga. Deep breathing. Whatever works.
Most importantly, I need to stop trying to fight anxiety in the same way I used to fight stress.
Oddly enough, I now know what I do not know, and I feel all the better for it.
Aside from those two discoveries, two other things struck me as I looked back over the month.
Ben Is Still There
The disease has undoubtedly progressed, but Ben is still here.
That was genuinely reassuring to discover.
Humour still appears throughout my writing. So does an overwhelming desire to find meaning, to help people and to keep contributing. Reading the blogs back reminded me that although PSP is changing me physically, it has not taken away who I am.
Long may that continue.
I Still Need Purpose and People
One thing almost screamed from the pages.
I still desperately want to be useful.
Whether it is asking for feedback, offering patient experience discussions, analysing PSP rating systems, writing about those facing serious illness alone or producing a guide for the newly diagnosed, the theme is the same throughout. I still want to contribute. I still want to make a difference. I think that is a very positive thing.
Yes, the disease is getting worse, particularly with my eyes, but as I looked back over the month I realised something else.
I am surrounded by love.
So I want to finish with my heartfelt appreciation to carers everywhere, and especially to my wife. It is often a thankless role, carried out quietly and without recognition, but it is appreciated more than you will ever know.
Perhaps that is the biggest surprise of all.
I thought I was looking back over fifty-nine blog posts.
Instead, I found a clearer picture of myself.
