Today has been dark, to say the least.

I have experienced so many aspects of PSP today, as have those around me. My body has been stiff and painfully slow. Later, the nerve pain returned despite the gabapentin, and even an opioid has not been enough to bring it under control. I have been angry, frustrated and exhausted.

It has been a veritable potpourri of PSP symptoms, with plenty more that I haven’t even listed. Not a particularly attractive assortment, and certainly not one I would recommend.

But… and here is the important but.

We got through the day.

And, remarkably, we even managed to have a laugh.

A physiotherapist from my HMO came to the house following our complaint that my brand-new wheelchair had arrived without a seat.

Yes, without a seat.

He patiently explained that the seat had to be ordered separately. Apparently, this is perfectly normal. Personally, I have never bought a car or a sofa and discovered that the seats were an optional extra, but clearly wheelchairs operate according to a different set of commercial principles.

Even better, it turns out that the mistake was mine. The relevant form was sitting in the file all along. I had simply missed it.

So there we were, laughing at the absurdity of it all. After everything that had happened today, we were still capable of finding something funny.

And that matters enormously.

Earlier today, I wrote about being frightened of the day when I might stop writing. I meant every word. The fear was real then and remains real now.

But my feared last post was not my last post.

And hopefully, there will be many more posts, just as there will be many more opportunities to laugh with my family.

I wanted to make that point before going to sleep tonight.

I write openly about pain, deterioration and the difficult realities of living with PSP. I freely admit that I am frightened of what lies ahead. I have no reliable timetable, other than the uncomfortable knowledge that the time available to me may be relatively short.

I cannot change that reality.

But I can try to decide how I respond to it.

I want to enjoy the time I have been allotted. I want to continue writing, thinking, laughing and contributing. I want to make life as enjoyable as possible for those around me, even when the disease makes that extraordinarily difficult.

And I want to remind myself, particularly on days like today, that a terrible day is not necessarily a terrible tomorrow.

PSP is progressive. That hasn’t changed. My fears haven’t magically disappeared, and neither has the pain. But the darkness that engulfed me earlier has lifted enough for me to see beyond it.

That is worth recognising.

This is not a bad news blog.

This is a resilience blog.

Sometimes that resilience falters. Sometimes it is buried beneath pain, fear, anger and exhaustion. Sometimes I struggle to find it at all.

But I have discovered that I can bounce back, even when I am convinced that I cannot.

Not always. Not on demand. And not necessarily for very long.

But enough to laugh at a wheelchair without a seat. Enough to write another post. Enough to go to bed with a little more hope than I had this morning.

Goodnight, everyone.

I sincerely hope, for entirely selfish reasons, that I manage to sleep for at least a few hours tonight. Clearing my mind before bed is an important part of that.

Tomorrow may be another difficult day. Or it may be better. I simply don’t know.

But tonight, I am going to sleep remembering that I mustn’t lose hope.