Tuesday, May 22, 2012


Living with a chronic pain muscle condition is similar to living with random weather patterns. The location and intensity of my pain varies from day to day. I do not know from one day to the next where, or how severe, the pain will be.

Because it isn’t sunny every day outside, when it is sunny I personally want to get out there, enjoy that day and make the most of the sunshine. It is the same with my pain.

When, for example, my hands are free from pain, I want to try and do as many things as I can with them that day; to write, to do some form of art work, or to cook. I do all this for enjoyment, but also so that when the pain returns and I struggle to do any of those things, I will be able to look back on my day of being pain-free in one area with no regret. 

After having 10 years of living with a brain that barely functioned I now also have a drive to use it. There are still many days when I struggle to use my brain to its greatest capacity because of headaches and pain, but I now love being able to think and process things. I lost a lot of my vocabulary after all my surgery in 2000 and had to re-learn it. Because of this I also really enjoy being able to describe things.

I think that wanting to seize the day is a driving force in my life. But what I find disappointing is when extreme fatigue hits me and I don’t have the strength to do much of what I would like to do with that day.

I do wonder if I would have this perspective if I was living without pain. Do ‘normal’ people have the same driving force to use their bodies to the best of their ability each day? To make the most of hands that don’t hurt, to write? To make the most of legs that don’t scream with pain with every step? Or are they not even aware that they are living a life of freedom without physical limitations?

I’m not sure that we are even conscious of the freedom in our lives until there has been something that threatens to take it away. As the band ‘Counting Crows’ put it, “You don’t know what you’ve got till it’s gone”.

We appreciate sunshine and warmth after a lot of rain and cold weather. We truly appreciate rain only if we have had a dry spell. I wonder if it isn’t the absence of things that make us really appreciative of them.

It never crossed my mind before 2008, when my pain progressed to my hands, how fortunate I was to be able to hold a pen, paintbrush, or cutlery to feed myself without pain. Neither did it cross my mind before 2009, when my pain condition progressed to my legs, what a marvel it was to be able to walk down stairs, or up a hill, without excruciating pain in each step.

I think that one of the most important things I have learnt through experiencing pain is that we need to do what we can do with ease, and make the most of that physical ability. To enjoy the ‘sunshine’ when it is around and bathe in its beauty.

This is something I aspire to do.

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