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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.

Friday, 4 October 2013

I think like a squirrel

We've all seen the little squidges, hard at work, furiously at work burying their latest nut, totally concentrating on their task at hand when all of a sudden they lift their head and bound off in another direction and start the same thing all over again. This week I have felt a strong connection with my furry cousins and had moments when I have felt like Scratch out of Ice Age as I repeatedly have gone back to a task that I had thought I had done but in fact had only imagined I had done it so each time my nut was missing!! Blooming annoying.

So what? I hear you say, you do that all the time too. Well that's probably true but I've been learning all about my brain this week and I have learnt reasons for changes like the one I describe above. Whereas I was thinking that my memory had deteriated post my SAH I have now learnt that in fact my processing power has probably gone down a notch or two, so it's not that I don't remember it's just I just didn't file the information fully in the first place. And the good news is that hopefully I can continue to retrain and reboot my brain , YEY!

Life marches on with me. I'm back at work for a fair few hours now,I am managing weekly trips to my London hospital for rehab completely unaided and physically I remind myself more of the pre pop Tifty. Who would've thought all that was possible even twelve months ago, not me for sure, yet here we are. Time has passed Slowly but it has been kind, and after lots of baby steps , gritted teeth and the odd few moves backwards and sideways, its good to report that its going pretty well right now. I know that this dance will continue long into the future, maybe my entire life, but I suppose I am more familiar with the steps which makes it a little easier when I stumble or fall.

I still set myself little goals each day, a trick that Headway introduced me to early on. Admittedly some days those are simpler than others but there is some satisfaction to be had in putting a load of washing on, honestly there is. I didn't say enjoyment please note, I derive satisfaction that I could complete the task I planned to. Wanted to clear that up as I don't want friends to worry I have had a complete personality change and now enjoy doing the laundry!