I choose Pain and Purpose

Last week was a bad one, mainly due to the introduction of a new drug. It knocked me for six in a way I find hard to explain. I was truly in shocking pain from my leg: what seems to be a nerve type pain in my hip and thigh area. Truly terrible pain.

My GP, Neurologist and Psychiatrist (who is in charge of anti-anxiety meds) had a call and chose a painkiller which I would take full time but which used to be a medicine for depression before being re-labelled for pain. It is a relatively common drug and I know people with PSP successfully using it. The Psychiatrist raised the concern that it was an old drug with a real possibility of side effects, but we decided to try it in a small dose.

It was awful. For me.

I responded as if in a drug-induced stupor for the first few hours of the day, unable to write or think. I was simply out of it, and yes, it influenced my decisions.

I realised the connection to the drug and how I felt, spoke to my GP, and we have pulled the drug as we search for the next option, which very well may be a cannabis one, but that is not yet concluded.

For now I have pain… real pain. Asked to describe it on a scale of 1 to 10, I put it at 7, but now I may put it at 8. A 10 for me is the lumbar puncture that hit two nerves, so it is quite a high 10. It is not all the time, depending on the position I am in, but it is stopping me from sleeping (even the amount I was) and hurts like hell.

One of my therapists told me she had never seen anything like it before in her experience. The muscles of the thigh were incredibly tight, like rock, and the nerves appeared to be fighting during the treatment. The pain would simply return to unbearable levels. I am not a trained medical professional, so I don’t know a nerve from a muscle, so apologies if I get the terminology wrong. It was just pain to me. Sheer pain.

But I choose it every time over that stupor I found myself in. I am using ibuprofen, other drugs, hot water bottles, ice, Voltaren, a massage gun, massage treatment, physio treatment and even a CBD vape. These can help, but the pain remains, sometimes touching a 9/10 like a few minutes ago. I had to get out of bed and move, even if it meant a logistics challenge with my wife to bring me to the armchair (and watch the Brazil/Morocco match).

But I choose Pain. I hope we find another option to treat it.

Purpose

I announced a stop in writing, saying I needed a rest. That was and is true. I have however felt completely lost without writing and without this outlet for talking through my condition. People have told me I could write a private journal or write to selected people, and that may be true, but I need a purpose, and I will explain why.

There was a conversation about people’s plans this week, and I literally said I have absolutely nothing planned. At all. I have the odd treatment and my weekly commentary on the portion of the week (a Jewish thing), but nothing.

I almost revelled in it. I am free to watch Wimbledon and the World Cup, but for me right now, still with this cognitive function alive, it is without meaning and purpose, and I felt useless, and dare I say it, a patient.

I have the strength and the ability to write, and for me that has to be about my patient experience with PSP. Authoring a book of fiction would be ridiculous when I am going through this journey and am able to raise the voice of patients with terminal illnesses and their loved ones. It would be a terrible waste.

There are times I need to rest more, and there are times where the whole world doesn’t need to hear about my latest episode (such as the reflux that is back), but just take this article for example. I think people should understand that acute pain comes with PSP (my kind, anyway), that there are complications with drugs, and that there are good people like my Neurologist, GP and Psychiatrist working together to try to find solutions. These are little nuggets of information which may be useful to someone. (Someone also asked me to talk about life with a carer, which I will get to soon.)

I have realised that at some point I may be forced to be a couch potato or a bedridden patient, but not yet and not now. It is not the writing that stops me sleeping, it is the writing that prevents me sleepwalking through life.

Many of you would have put money on me making an appearance sooner rather than later. I didn’t think I would. I made it through two days of the World Cup. Pathetic.

I am honest about PSP, but I am not planning on giving it an unnecessary advantage.

I wish everyone a good week. And regarding the book on Amazon, I can add to it at any point so that it remains up to date (and I am not actively marketing it, so it does no harm).

Of course, I don’t know if people want to read this blog, but that isn’t my real concern, because if one person (and it could be me) benefits, then I have done something useful.