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Friday, 1 February 2013

Brain versus pain

When I was a little girl I dreamed of becoming an architect. I wanted to design. It never happened and I have ended up doing a variety of jobs since then. Reflecting on my career (having time on my hands since the brain pop) I realise all my jobs to date have given me opportunity to come up with different ways of doing things and ideas and solutions and it that I love. So I guess I am an architect of ideas!

Over the last 12 days I have been sick as 3 sick dogs in this fine London hospital but I have spent time thinking about what I would redesign to improve hospital life rather than wallowing in the pain.Imagine how pleased I was when I discovered my bed neighbour, as well as being very tolerant about Jurassic Poos headed her way, is an architect and artist. Pain can be distracted I have learnt by good conversation,ideas and of course morphine and I have had plenty of all three. So hats off to Doodle girl and here is our top 3 redesign ideas.

1. The chair commode. This unisex contraption has a small gap between disposable bowl and seat. Boys, you have the advantage here with your multi directional wee stick. Girls, its not good news if you're busting. I'm on fluids IV so have pressure equivalent to a water mains pipe, this means I always find the gap and can spray down my legs before you can say 'please nurse'. My suggestion is simple, make the bowls fit the gap and deeper; trust me it's not a spa treatment to sit in a bidet of your own wee even if you haven't had a warm bath in days..

2. Bedside cabinets in hospitals are rubbish, lots of hard to reach cupboards and a shelf that everything falls off the back of. Hospital big wigs, what we need is plenty of different size sliding trays and hanging pegs. I have spent a lot of time recently clawing around for stuff that falls out and frankly I think there are better forms of occupational therapy. Im sure IKEA have just the thing and would do a deal.

3. Noise reduction sleeping ear muffs. All patients should be given ear protectors that are soft enough to sleep in but up to the job of muffling those 'aiaiai's' that turn up a decibel at night. Thanks to beloved husband I have F1 ear plugs already but frankly they're as much use as a Eskimo in the desert.

So that's my top 3. feel free to add your hospital environment improvement ideas. Who knows might get somewhere. Thank you for taking the time to keep me company in hospital and to read this ramble.

Pacing sucks

I'm approaching a year on from when I had my brain haemorrhage and it's amazing how far I've come for which im so thankful but also how achingly frustrating progress can be sometimes. Brain injuries are curious things;being the wonderfully unique creature we are every brain injury will manifest slightly differently, there's no well trodden path of symptoms that are easily explained or treated.

In my world it often feels like I have gained a mysterious passenger whom delights in chucking out heightened responses, sensations or pain often when I least expect them. This list is not exclusive to brain injury I know, everybody says the wrong thing from time to time, misplaces a word, forgets their keys, gets headaches , the oddity of this new experience is that when something has kicked off in your head like it has in mine that my every sense feels very exaggerated. Its like I've bigged up all my sensory and emotional receptors. "I'd like some grief please?" , "certainly, would you like to go large with that?" "why yes". Actually , no I wouldn't but it appears I have no choice in my new state.

Pain can shoot up quickly and inexplicably and then can leave just as quickly but leaving behind a creeping exhaustion like you've just worked 16 hours straight even though it's only an hour since our hauled your arse out of bed.

Before my brain pop could have sat through ET, Lassie, Chalottes Web, Terms of Endearment and not shed a tear, some of you may say thats not a good thing. Now however you only have to waft a baby near me and I sniffle, shown a sad story on the news triggers full blown tears and a simple argument over tidying the kids bedroom apparently can end in tears as quickly as you can say " because I say so that's why!".

I am gradually getting to know these new modifications to my brain upgrade, I'm learning the signs , triggers and trying to limit the effect they can have on my everyday living. Not all the time though and this week saw me having brain and body scans to check that James and the gerbils were in ship shape condition as odd symptoms completely and quickly knocked me off kilter. Its all tickety boo though which is great but there's an element of Fluidity and surprise that is keeping me on my toes.

In my quest to recover I have been introduced to 'pacing' and it's beyond BORING. Yes, I know it makes logical sense to keep a steady pattern of activity , not too much rest but not too much excitement , you get the picture, but YAWN! it's hard to be this boring. Forced inactivity is such a strange beast, I even find myself rebelling against it which pretty much defeats the whole point of the exercise. I'll be sitting down having a quiet period and then find myself leaping up off the sofa and shoving a load of washing in just to be doing something! I mean I bloody hate washing,I never rushed to do it previously but the lure of doing something , anything is just irristable somedays and then I pay the price of rushing. Hey ho, progress is painful I suppose and I've come a long way in a short time, I have faith I'll get there, maybe wearing sunglasses and earplugs but I'll get there.