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Monday, 21 October 2013

Samual Pepys I ain't

I am not sure that I have any more right to write about my experience than anyone else but almost immediately since surviving my Sub Arachnoid Haemorrhage and it's subsequent life changing effects came a need to write about how I have felt and the experience of it all. I guess it has turned into a cheap form of therapy for me. Even in the darkest of early days, once I came round in ICU with tubes running everywhere and morphine levels high I began jotting into a notebook that a friend had left by my bedside .

I remember my nurses asking me on one occasion what I was writing about; I think they found it slightly nutty that here was this woman who had a head half shaved, full of staples and pipes , unable to stand unaided but was often to be found scribbling furiously into a notebook. It amused and bemused them at the same time. Perhaps there was also a nervousness that I was cataloguing the less salubrious goings on in a critical care ward (I did get a few of those too!) . All I know is that I poured my thoughts, my fears and sometimes my amazing hallucinations into that little notebook. It was a companion, someone I could talk to no matter the time of day or night. I filled that notebook entirely in those 6 odd weeks that I spent locked in ward in a bed in London. To be honest I have only looked at what I wrote a few times as I still find it a bit painful to read. Interestingly whilst I may have thought I could write at the time my handwriting and spelling tells a different story. Some of it is completely illegible, other bits just drop off the page and I often stopped halfway through a thought. A page turner it most definitely isn’t.

I kept up writing my diary once back at home. I captured my daily achievements, my tiny successes, and the painful progress. I wrote down my pains and aches like I was keeping a weather chart. I listed goals for each day and tried to tick them off. Sometimes it was just ‘get up’ and that is all I achieved. It’s really strange to look back on that time and have a reminder of it. I wrote how happy I was the first time I was given a full head hair wash but also the fear that just doing that could dislodge something in my head. I wrote of my embarrassment that I had to be helped to wash by family members as I couldn’t manage to do it by myself. I recorded the tears that fell because I couldn’t manage to even brush my daughter’s hair ready for school.

Roll on a few months and despite thinking I was doing well I found myself back again in the hospital. That was a shock and a half and to be honest I was feeling frankly miserable and bruised and battered and trying to weather the after effects of a second brain surgery. That’s when I started this blog, which looking back was probably a pretty crazy thing to do at the time but I have gained a lot of comfort from writing it. It seemed somehow a more civilised way of writing my thoughts down and also it gave me a way to practice doing things which to that point I hadn’t been able to do. Before I had James shunt put in to relieve the brain pressure from the gerbil wee I couldn’t watch TV, look at a screen for any length of time, but after the operation, whilst it took its time to get to a steady setting, it was instantly easier to look at things online.

The other positive side of all my online journaling is I can tell people around me how I am really feeling without having to look them in the eye and say it, something I surely couldn’t do without tears on some days. I suppose I am still grieving for the bits of me that I lost when my brain bled and whilst it does get better, much much better, it can never be the same as it was, what I knew and was familiar with. Hey, but any change is always hard right?

My closest and dearest family and friends see me every day, they see the progress I am still making, they know the battles I still face and struggle with, they reassure my fears and they realise and support me as my recovery is years in the making and not a matter of months. That’s a harder message to tell and this blog helps me to be honest about that reality to people I see less often and is my easiest way of being the honest upfront person I think I always was and still am and if along the way a few complete strangers read it and enjoy it too, well then that’s all good stuff too.

1 comment:

  1. I am always looking out for your next post, it makes me feel like I am chatting to you even if we have not seen each other for years... the wonder of technology, it makes you feel less alone sometimes. Great to see things progressing nicely, who would have thought you would be doing some of these things 2 years ago, I am a big believer in change however hard it is! : ) sending love and kisses Suzanne xx