Diary Post
Days when it just doesn't work....
I've had one of those crappy days today, not because anything went wrong or anybody said or did anything to piss me off. But just 'because'.
I've had plenty of those days where plenty has gone wrong in recent months. At times it felt like it was open season for having a 'pop'. Since my first ‘attack’ and subsequent diagnosis I can honestly say that nearly every part of my life has changed.
Some things I have come to learn; it doesn't matter how much stuff you surround yourself with or how high you build your towers, it can all be blown away in an instant.
Never feel untouchable or above this because one day, it really could be you.
But I'm not writing to lecture you, not today. I just want to 'blood let' for a while and write it down. Because my day really has felt pretty 'crap'.
I had a really nice day yesterday, we took the kids over to Grandma & Granddads’ for the holiday which was great and some of my brothers and their families turned up with their kids. So I spent a lot of time play fighting with them. Then I had the usual bout of “how are you” and “when are you at the hospital next” and stuff because naturally their concerned.
I only recently told my family even though we've known for some time. I couldn't see the point of telling them because I didn't want to worry them and I knew there was nothing they could do about it anyway. I also didn't want this kind of questioning getting in the way every time I saw them because it's now more than ever that I just want to enjoy their company.
Mandy was furious that I wouldn’t tell them because she said it was their right to worry. I understood where she was coming from but I didn't want to be the object of their pity so reluctantly she agreed to go along with it.
It's only since it was becoming increasingly obvious that something was wrong and I was turning ‘yellow’ that I decided to 'come clean' so to speak.
However, I try my best to be my 'old self' whenever I go over, like I do whenever I go to any of my friends’ and families place, or if I bump into someone in the street.
But you can always see as we're talking, the conversation going on behind the eyes. It’s the evaluation of when I was my old self; and now. The "oh Christ he looks awful" and the “it’s true then” and all the while their mouth goes into 'autopilot' as they ask "so, how are you?" Then the realisation of the enormity of that question!
For my family it is genuine concern but for many it's a "bollocks, bollocks, bollocks, why did I say that" moment. I try and getaway with “Yeah, y’know, just plodding along” a ‘get out’ for both of us but some people just don’t know when to stop!
But, after a day like yesterday, as ever I’m tired and usually in pain so I end up spending the day doing very little or staying in bed. The kids will come in periodically and crawl all over you and you feel like screaming at them because their hurting you or keeping you from your sleep. Or you want squeeze them tight to you and get comfort from their innocence and lack of understanding of the situation.
And that’s when the emotional roller coaster kicks in. You start to wonder if you’ll ever get a transplant because God, you’re sick of feeling sick. You want to make plans but then you know you can’t. The “why me?” and the “why not you, who ever said life was fair?” And you start to believe that everything you’ve ever done could just be about to go down the toilet.
It does make you feel afraid and even cry. You want to hide and under the covers and have a really good ‘blub’ like you did when you were a kid, hoping your Mum would hear and come and tell you it was just a nasty dream.
Mandy has been great and so have the kids. They made me realise that all that truly matters in life is the people you surround yourself with. And then you cry again. But, for now I’m all cried out so I thought I’d try and write it down to try and make some sense of it.
My life has been punctuated by some massive highs and extreme lows but on days like today, nothing seems to really work anymore…
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