I've been lying to you

I've been lying to you.

I'm not ok.

I've usually tried to make these blogs upbeat and positive because I believe positivity is one of the strongest weapons in my arsenal. But there has been many occasions where finding positivity has been impossible and perverse. My cheery demeanor becomes a pretence, a lie, a mirage designed to pretend to everyone that I am ok, when in reality I am a million miles from ok.

I can't begin to describe to you what living with chronic pain is like. I have spent an entire career using the power and versatility of words to communicate effectively, but I find myself utterly incapable of describing the depression that washes over me during the worst pain episodes.

Balancing the positivity equation

My tactics for dealing with depressive episodes have usually involved actively making myself find things that I can be cheerful or optimistic about. And yet, as the pain episodes have become ever more intense and frequent, I find that my 'old reliables' are somehow lessened by their constant availability.

My brain subconsciously assigns a lower value to 'dependable positives' (such as my wonderful wife, surrogate daughter, family, friends etc). Perhaps because they are so permanent, they are somehow lessened? Don't we all tend to appreciate less those things that are always available? It's almost as if when I am trying to find things about which I can be positive, my brain says "yeah, ok - but they're always there - what else have you got ?". God that sounds so ungrateful and selfish.

But when I'm having a bad pain episode, (and we've reached the stage now where the worst episodes can last 48-70 hours), it is all but impossible to make my brain focus on the positives. In fact, it becomes impossible to focus on anything but the pain. It consumes my existence to the point that consciously trying to focus on anything else - let alone something positive - is a futile and pointless exercise. Pain consumes you and chronic pain is all-consuming.

Is Assisted Dying an option?

I've been a passionate advocate of the Assisted Dying bill currently making its way through Parliament because it is something I consider to be well overdue in this country. The ability to keep people alive should not trump the compassion of a decent quality of life. Currently, we keep people alive because we can, without ever considering whether we should.

I want to be clear about this - I am not suicidal. But - I have watched too many family members and friends die in conditions that we would not allow beasts to endure to not consider the equation of quality of life v assisted dying. I will not put my loved ones through the agony of watching me slowly waste away in a prolonged brutal endurance. There have been so so many times where I have considered how warm and comforting the embrace of death might be, compared to remaining in this jail of pain.

A new dawn?

Clearly, I cannot continue on this downward spiral. It is a cul-de-sac that ends only in my funeral. And while assisted dying is definitely an option that I can keep in my back pocket for further exploration at a later time, it is not being brought into the playbook now. It is solely and exclusively an option of last resort. Now is not the time for that last resort.

So today I choose to follow a different path.

I have a fabulous joint medical team and we have commenced a process whereby we will take individual steps, each aimed at making my existence more tolerable. If you've read Dave Brailsford's philosophy about marginal gains, you will recognise the approach.

I will undertake a variety of steps, each one designed to make a marginal improvement in my pain experience. The hope is that the effect of each of these steps, when aggregated together, will make a significant difference in attenuating the debilitating pain.

Step One is about addressing the lack of sleep. You don't need me to tell you about the health implications of a lack of sleep. So for now, we are trying Mirtazapine to aid restful sleep. Once we can assess how successful that has been, we can address what to do next.

Doing my bit

In tandem with all of this, I am going to try to exercise a little more than I do. As you know, I generally play golf twice a week but pain means I can only do so in a buggy. It's some exercise, but nowhere near enough. There's a lot of tangential stuff involved in the whole exercise debate though, so I'll write a separate blog about that in the days to come.

But for now, while I might be lying my arse off when I tell you I'm doing ok, just know that I'm doing everything I can to find the positives - even on those days when it feels impossible.

I'm trying hard everyday to live up to my motto:

Stay Strong. Fight Hard. Laugh Lots.