Turning in Bed – You Have No Idea

The studies mention difficulty turning in bed, but those words do not begin to explain how materially it changes your life.

It was similar with my eyes. I was told that PSP would affect them, but I had no idea what that would actually mean. To be honest, I still have no idea what may be coming next.

Turning over in bed belongs in the category of things most people never think about. You feel uncomfortable, or simply want the cooler side of the pillow, so you roll over. It takes a second.

I think about it every time.

For me, turning over has become a nightmare. It takes ages and can feel as physically demanding as doing ten push-ups, which I still manage every morning. Unless I am genuinely uncomfortable, I often decide not to bother. The effort simply is not worth it.

When I do turn, I have to begin with a determined push while being incredibly careful not to roll too far and fall out of bed. It is a strange combination: needing maximum effort and maximum control at exactly the same time.

The cause is, of course, PSP. It is largely a combination of axial rigidity, bradykinesia, which means slowness of movement, and reduced mobility through the trunk. The cruel irony is that these problems often feel worse when I am tired, which is precisely when I am lying in bed and need to move.

It is not the same as nerve pain. It is not agonising in that way. But in terms of discomfort, frustration and sheer annoyance, it is right up there. There is also no simple treatment that makes it disappear.

Some people may read this and think: big deal. It is only turning over in bed.

They should try living with it, alongside the hundred other small things that are no longer small.

The strange thing is that today began well.

I had a lovely conversation with a fellow patient who is currently in hospital – who I wish well. We chatted about the music she was listening to and the memories it had brought back. I came away wanting to write about music, memory and the things illness cannot take from us.

Then I tried to pray.

I could hardly see the words in my prayer book. My eyes simply would not cooperate. It was all a blur, much of it doubled, and what had begun as a good day suddenly changed. I became frustrated, fell into a funk and decided to go to sleep.

That was when the next small thing became enormous.

My carer had placed my phone on the left-hand side of the bed. I fell asleep facing the other way. When I woke up, I wanted to reach it, but doing so would have meant turning my entire body.

So I gave up.

The phone was only on the other side of the bed.

It simply was not worth the effort.

That is how PSP can work. A day can begin with a warm conversation, music and memories. Then you cannot see your prayer book, your mood collapses, you go to sleep, and even reaching a phone becomes too much.

The irritations of the present can easily crowd out the memories we wanted to hold onto.

But they do not erase them.

Despite all these terrible annoyances, and despite the far worse things that come with this disease, we still have memories worth holding onto. Music can still reach places PSP cannot.

Today, for me, it is Fleetwood Mac’s “The Chain”, especially the second half. I love the whole song, but that extraordinary final section will always be connected in my mind with Formula 1, a sport I love even though I usually fall asleep while watching it.

Which, I suppose, brings us neatly back to today.

My default, however, remains Dire Straits.

Some things are still effortlessly within reach.