|
Getting your Trinity Audio player ready...
|
Today has been a pain in the neck for more reasons than I can say, and not all of them are PSP-related. Some things are best left off the blog.
But the PSP side of the day started badly enough.
This morning I woke up in acute pain. Real pain. The kind that leaves you completely stuck, unable to move without every shift of your body demanding payment. I spent the first couple of hours effectively bedridden.
And honestly, I think I know exactly why.
Yesterday, I overdid it.
I pushed 30 minutes on the exercise bike, 10 more than usual. I had an intensive physio session. Then, for reasons only LinkedIn can probably explain, I spent hours in a ridiculous back-and-forth debate about geopolitics that dragged on until 1 a.m.
By the end of it, I was physically exhausted and mentally drained. Completely absorbed in something that, in truth, probably did not deserve that much energy. The post was eventually deleted by the other writer after I challenged what I saw as a borderline anti-Semitic argument strongly enough to annoy him. I suppose, in its own strange way, that counts as a victory.
But my body sent me the bill this morning.
Every movement hurt. My hip was screaming. Even light felt aggressive.
A combination of four hot water bottles, ibuprofen, water, food, an espresso, a massage from my carer, sunglasses, an occasional eye mask for the light sensitivity, and a small measure of determination eventually got me functioning again. Slowly, the haze lifted.
There was, however, one unintentionally funny moment in the middle of all this.
A friend who knows that I dislike quiche more than perhaps any other food decided that breakfast was the perfect moment to send me a photograph of the quiche they were happily eating.
Apparently, friendship sometimes means kicking a man while he is down.
But while I was lying there, another thought kept pushing its way to the front of my mind.
The toilet.
That probably sounds ridiculous to healthy people, but when movement itself becomes difficult, basic logistics suddenly matter a lot. Especially after water, coffee, and a smoothie.
Although the diaper was there as a precaution, I had absolutely no desire to test its reliability voluntarily.
And that was when my mind drifted again toward catheters.
Something I dread even more than the D word.
Something I know will almost certainly become necessary eventually, especially as, despite three drugs to counter the constant need to go, I’ve been at least ten times this morning already.
For now, a friend recommended a temporary travel option for emergencies rather than regular use. After rereading a message he had sent me weeks ago, I reluctantly bought my first one to keep nearby if I ever need it.
It feels like my first real step into a category of medical devices I never wanted anything to do with.
Logically, I know there is nothing shameful about any of it. If anything, these tools create freedom and dignity.
But I am also British.
And somewhere deep in British culture there is a built-in instinct to feel mildly embarrassed by absolutely everything bodily. So yes, part of me is irritated and resistant to the whole idea.
Still, reality is reality.
Then came the second battle of the day: customs.
After writing my fourth book, I discovered that because of the current geopolitical situation, it could not easily be shipped here by Amazon. So, with no commercial intent whatsoever, I arranged to bring in copies at cost price for friends, family, and a few readers, often simply as gifts.
Ironically, because the book is not enrolled in KDP Select and I retained full copyright control, I was also able this morning to place a free PDF version of the manuscript online for people in my country who currently cannot access it any other way:
Living the Tension: Finding Beauty in a Complex World
To be clear, wherever possible I would still strongly encourage people to purchase the book through Amazon and, ideally, leave a review there as well. But for those who currently cannot access it because of shipping restrictions, at least this way the words themselves remain available.
After a very long exchange with customs officials, who were actually kind and considerate throughout, the conclusion was simple: the books could only enter commercially, which was not something I was prepared to do for multiple reasons.
So the books are going back to the UK, where I will donate them to charity instead.
Financially, it has been painful. Between printing, shipping, and return costs, it is not a small loss. And yes, I am frustrated.
But there are bigger problems in the world than my annoyance.
More importantly, I realised something today.
I cannot afford unnecessary wars anymore.
Not with strangers online.
Not with customs departments.
Not with every frustrating situation life throws at me.
Stress has a cost now. A very physical one.
Sometimes the strongest decision is not fighting harder. Sometimes it is recognising which battles are no longer worth the damage they cause.
So after I post this, I am going to sleep.
Rest.
Reset.
And wait for the next elephant to land, whether PSP-related or otherwise.
But today also forced me to realise something else.
If I am going to tell this story properly, then I have to actually tell it properly.
That means getting over some of my British discomfort with words like diapers, catheters, bodily functions, and all the other realities that come with neurological disease.
This is the territory now.
And if people choose to follow the journey, then these are the realities we will sometimes have to talk about honestly.
