Tribes

I have come to realise, in the past few years, but more acutely in the last 8 weeks, that only the people who value me simply for being me are the ones that matter.  

I have learned who is present with me and who watches from the sidelines with an intent only to be negative.

I have too much to cope with, just simply getting out of bed of a morning and making myself "look well" , to deal with other people's bullshit, deceptions and manoeuvring.  I figured this out a while ago, but now that I am making conscious decisions not to give a toss about things I can't change, it is really quite liberating.

The physical aspect of living with chronic pain is hard enough.  The emotional turmoil I have makes me feel angst and guilt over ridiculous things.  For example, the fact that the two reprobates in this photo with me make me laugh and feel human.  But then I think - I'm 'sick' and therefore shouldn't be showing myself having fun. Just for the record - I was laughing at Cody being his usual idiotic self, but at that point, I had had to sit down because the pain in my hip, leg, abdomen and other places was so awful that I really couldn't stand.  I didn't mention this - why would I?  I have managed for years and when I have an opportunity to be normal and not solely defined by my condition, I take it.

I went into work this afternoon to do a couple of jobs that could only be done in the building.  I lost count of the number of times I responded to "You look well" with "I haven't had my surgery yet".  Those three words "You look well" are so painful to hear.  I want to scream when I hear them, almost as much as I want to scream when I hear "But you don't look sick" or "Yeah, I had a friend who had what you have and they were cured and now they are fine"  (there is no cure.  Only surgical processes and medication regimes to manage it).

It was good to go in - I saw people who I consider to be far more than my colleagues - my friends, my tribe.  I have many tribes and each one I have a different role.  But every single one of the people in my tribes shows me sensitivity, love, understanding and care, without any judgement and daft advice and suggestions.

So, I say this.  With less than a week to go (I hope!), those of you who care about me, just because I am me and not because of sympathy over my shitty health, I value you above all else.  For someone usually so able to write fluently, I find that I do not have the words to explain how important you are to me.  My family, near and far; my friends at work - new ones and those who have shared more than a decade of my life; my friends from home, from my childhood and teens that are still there, despite being spread around the world.  I may not see you or speak to you every day, but please know that I value you all.

I'm OK.  But a little bit terrified (and I realise that is an oxymoron).

Night 
xx