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I have PSP, a life-threatening neurological disease, and today I am absolutely gutted about clothes. So much so that the anxiety caused the muscles in my face and arms to go rigid, meaning I couldn’t move my mouth and, in practical terms, I couldn’t move my arms. My carer, in combination with the massage gun, helped unlock them.
It sounds ridiculous even as I write it.
I spent part of the day ordering new clothes because I need to go up a size. A couple of years ago, I was going the other way.
And it has really got to me.
The warning came a few days ago when I tried on the suit trousers I wore at my daughter’s wedding only a few months ago and discovered that they were, let’s just say, a “stretch.”
Today made it real. I actually had to order the bigger clothes.
Of all the things PSP is doing to me, surely this should be somewhere near the bottom of the list.
I am in a wheelchair. I cannot safely walk without enormous assistance from two people and/or rails because my balance is so poor and I freeze. I have a progressive disease for which there is currently no cure or treatment that stops it.
And I am upset about trousers (aka pants for my American cousins).
Except, of course, it is not really about the trousers.
Before all this, I was probably in the best physical shape of my life. I was running 5Ks and 10Ks. I was active. My weight was under control. In fact, I went down a size from the current size, and I was borderline to go down two sizes.
Then my mobility gradually disappeared.
Today I spend almost all my time in a wheelchair, armchair or bed, for very good reason. Walking is not simply difficult. It is dangerous. I lose my balance, I freeze, and if I do try to walk I need people around me to keep me safe.
It is hardly an efficient way of burning calories. I am like a poor tortoise who, instead of walking continuously, stops every few metres and can only manage about five metres in total anyway.
I have changed my diet from the really healthy Mediterranean diet I once ate because I now have to eat in a way that helps prevent me from choking. There is less food and less variety, but also, at times, less healthy food, including vanilla when anxiety bites, which is far more often than I would like to admit.
But despite this, I exercise. I practise yoga. I lift weights. I use an exercise bike. I genuinely do what I can, under supervision.
Still, it is not enough.
Because ultimately, doing what I can today is very different from running 5–10 kilometres and walking, running or boxing a number of times per week.
My body has changed because my life has changed.
And seeing that change reflected back at me in the size of a pair of trousers hurts far more than I expected it to.
People will tell me not to worry about my weight. They will tell me I look fine. They will tell me I have much bigger things to worry about.
They are absolutely right, especially as evidence shows that you lose weight later on in PSP.
That doesn’t stop it hurting.
There is something particularly brutal about these small, physical manifestations of illness. PSP itself is enormous. It is almost too enormous to process every minute of every day.
But a suit that fitted a few months ago and doesn’t fit today is wonderfully, horribly simple.
There is no medical terminology involved. No scan. No neurological examination. No prognosis.
The zip just doesn’t go up.
That tells you something has changed.
My instinctive response, naturally, is to fight it. I want to spend longer on the exercise bike, keep lifting weights and exercise as much as my body will tolerate without deciding to power down on me.
I simply don’t know how much energy my body has available before it says enough.
Perhaps I can reverse some of the weight gain. Perhaps I can’t.
For the moment, I have bought the larger clothes. I am treating them as emergency supplies rather than a lifestyle choice.
That distinction is extremely important to me, even if nobody else cares.
And yes, I know how irrational some of this sounds.
But that is partly why I am writing it.
People do not experience serious illness according to some logical hierarchy in which the biggest medical problem automatically produces the biggest emotional reaction.
Sometimes the enormous things become part of everyday life.
And then something seemingly tiny comes along and floors you.
A shirt. A pair of trousers. A photograph. A number on a scale. A suit from your daughter’s wedding that suddenly doesn’t fit as it did.
Today, for me, it was clothes.
I am very grateful to the friend receiving them for me and bringing them over because getting what I need is not straightforward either, this time due to my length.
Even that somehow adds another little layer to the whole thing.
But we move on. We push on.
And tomorrow I will probably be worrying about something completely different.
I write this blog partly because writing is my therapy. This is my version of shouting and screaming, only considerably more contained and, ironically, heard by far more people than an actual scream would ever reach.
But I also write because this is part of the real patient experience.
Serious illness isn’t only hospitals, medicines, symptoms and prognoses.
It is also discovering that your suit doesn’t fit.
It is ordering the next size up when desperately you don’t want to.
It is knowing intellectually that you have far bigger problems and still feeling completely crushed by something that looks insignificant from the outside.
It may not be rational. But it is real. And today, it has really got to me.
