I should say “I”

I don’t know where this expression comes from, and for once I am not going to research it, because that would just be a diversion.

I also know it is not an excuse that can be defended in any meaningful way by me. In fact, it is horrible. However, it is true of me at the moment, and I am not entirely sure why.

Those closest to me, my wife, my mum and, usually, not my kids, get to see the worst side of me. They see the part I try to hide from blog readers, visitors and less-close friends.

I would love to explain it with psychobabble about feeling more comfortable with them, trusting them with my “inner self” and being able to let my guard down. But that is not good enough. It may help explain what is happening, but it does not make it acceptable.

I love these people more than anyone, and because of that I should show them more kindness, love and goodness than anyone else. I don’t always rise to that bar.

I can hide behind PSP, and to an extent I will. It has changed my personality, reduced my independence and made ordinary things much harder. I am in pain, frightened about the future and often trapped at home with nowhere for the frustration to go.

But PSP is not a complete answer.

The anger has to go somewhere, and it often travels like lightning to the place of least resistance: home. Sometimes it is a sharp answer, an impatient tone or an angry reaction to something that, in another life, would barely have registered.

Eventually, the dam breaks.

I am not describing myself as abusive, but I also do not want to dismiss the effect my behaviour can have on the people around me. I am struggling mentally while going through profound physical and emotional change. I am dealing with claustrophobia, the loss of independence, fear of what lies ahead and the constant effort of pretending to others, especially my kids, that I have got this.

I do not really have other outlets. There are not many people I trust enough to show this vulnerability to. Even with my loved ones, I try to protect them from it, which is another issue entirely. Friends are sometimes there and sometimes not, separated by distance and their own lives. I am guarded even around the professionals I consult with.

This is not a public apology. That is something I need to do in person, with the people involved.

Still, I suspect this is a feeling that others with serious illness may recognise.

At the moment, my leg pain is relatively high despite the amount of medication I am taking. I am writing this therapeutically because the opioid has worn off. If the keyboard were not here, I would probably be snappy and difficult to deal with. I am impatient, restless and capable of becoming annoyed by the smallest thing.

I will probably write this and continue to behave the same way at times. As PSP gets worse, I will get worse at controlling it. I will become less able to communicate and more affected by the behavioural changes that are so well documented in the research, especially anger and apathy.

I understand that, logically and neurologically, it makes sense. I am dealing with a lot.

As I have said before, those further along in the PSP journey, swamped by its weight and tide, simply may not be able to help it. I have seen evidence of that myself.

But I am not going to use that card for myself. Not yet, anyway.

I still alter my behaviour to some extent when my kids or guests are around. I am aware of my circumstances, and I do try to be more careful, even if I am not always successful.

The fact that I can still modulate my behaviour tells me that I can still do something about it.

I cannot speak for anyone else. I can only speak for myself. It is not good enough, and it is not acceptable. I may have one of the worst diseases there is, but that does not make hurting the people I love right. End of.

I am sorry to those people, but I need to make my peace with them personally, not simply write it in a blog. That is far too easy.

So perhaps the adage is true for me: I show my best and worst to those I love the most.

I cannot promise that PSP will never make me impatient or angry. I can promise to notice it sooner, to step away when I can and to repair the damage when I get it wrong.

I will try my best to show more of the first and less of the latter.