16:30, Thursday 5th April
I could not give a flying toss over how to drive like a racing driver. After all, I can’t even get in a car by myself let alone push the pedals, so I don’t know why I’m reading about it in Jenson Button’s Autobiography. It just feels that by reading a chapter of a book I will have achieved at least one thing today.
It is 4:30pm, Thursday the 5th April. I have now spent over 5 months in hospital and will be spending another 2 months more. The story being I got paralysed from the neck do
wn with GBS (Guillian Barré Syndrome) when travelling in Bolivia, narrowly escaping death. I was rescued by the British Embassy who took me to a hospital that were capable of diagnosing and then treating me. The first hospital was crap! Ten days later I was medevacked back to the UK where I was processed through the NHS system in the Royal Surrey Hospital in Guildford. I was then transferred to the Bradley Unit in Woking and that is where I have spent the last 4 months leading up to now.
At first the Bradley Unit was hard to adjust to, feeling like an old people’s home. Somewhere that a recently turned 22-year-old did not belong. Thanks to some amazing staff and some crucial changes to treatment and habitat I was able to settle in and progress, thawing my frozen limbs to the verge of being able to walk.
I have crossed many bridges to get to this moment, but through each bridge crossed the novelty wears off. The first achievement was to stay alive and in the early stages, being alive was enough of a pleasure to get me through much of the pain and trauma. But that wore off and the next novelties of becoming slightly independent have also slowly worn off one by one. Now I am left desperate to gain full independence as I still can’t shower, dress, cook, use the loo or even get up in the morning by myself. And that is just mentioning a few of the current defects.
So that brings me to now. Everyone has bad days and this is one of mine. I have just spent the last half an hour ranting to my mother about the little things that have got me down whilst we watched the ducks in Woking Community Park. I will now continue the rant on here.
This morning I woke at 7:30am and waited for one of the unit’s staff to come and get me up. By 9am I was still in bed and knowing I had physio at 10am, I pressed the call bell for a nurse to get me up. If I was to wait any longer I will miss physio. One of the nurses who is not usually in this unit comes in and I now have to explain my whole wash routine to her. I request that she gives me a bed bath and not a shower so that I can preserve my once every 2-day shower for tomorrow because I cannot shower when I go home for the weekend. She is not one for talking and it makes it difficult when trying to get things right. After specifically telling her to use a miniscule amount of shower gel it is clear that the word miniscule has a different meaning between me and her and when she wipes my legs down I see bubbles appearing from the high concentration of the solution. During the wash my occupational therapist pokes his head round the door and tells me that my physio is not in today and I may not be able to have my 10am session, he says they are seeing if they can fit me in with one of the other physios. Physio, bar time, is the main promoter of my recovery and to miss a session would be a pain in the arse. The nurse puts my socks on and It doesn’t take long before my skin becomes itchy and red from the highly concentrated shower gel. After a few more minor irritations in getting up I am dressed and on my chair. I shortly discover the cushion on my wheelchair is slightly askew pushing me to one side, again this is only a minor irritation but an irritation non-the less as it can’t be changed until I go to the toilet. I then wheel into breakfast, hearing the sarcastic comment, ‘good afternoon Angus,’ as I roll past reception. I enter the dining room and the food trolley is being removed so my planned breakfast of brown toast, hash browns and baked beans plus porridge to make the tinned prunes that I need to eat, edible are all gone. Now I am sure you are thinking, lucky bugger, getting all that breakfast on tap and yes, I suppose I am very lucky to have all those options for the majority of my breakfasts, even if the quality isn’t pristine. But this morning that was all gone. I was then handed some undesired tined prunes in which I managed to eat 5 of them before gulping down my jelly like solution of fibre-gel and swallowing my morning dose of pain killers. I have to have the prunes and fibre gel as it makes up for the lack of movement in concern to my bowels, movement is essential for helping the body’s bowels process shit.
After breakfast I successfully do a small poo. I can wipe myself now, therefore can have at least some say in my own hygiene. I head to the physio gym. There is no-one who can take my session so I set myself on the moto-med (cycling machine type thing that I can peddle with whilst on my wheelchair) and start my usual workout. A head pops up beside me and its Gennie, one of the physios offering to take me on for the last half and hour of my session. I’m elated! I set myself up on the plinth and we go through some sit to stand squats with the plinth elevated to a high enough height that I can stand up from with only a little help. My knees are blocked by Gennie’s knees so that the weakness in my knees does not allow me to collapse, allowing us to work my hips. After physio I go to my room and try to shake off the frustration that I have felt all morning by playing music and drawing in the sketch book that my girlfriend, Alex gave me. I also replied to the apology messages on my phone from Alex as she upset me a little last night through some of the things she said. It would be fair to say that I was probably a bit over sensitive. Alex and I got together when she visited me in New York last Summer but we only made it official once I had been medevacked back from Bolivia. I owe her full credit for staying with me when times got tough and she has been a saint the whole way through.
Lunch was a bit of a downer with both patients left and right of me clearly being heavily affected by their neurological issues and as a result the conversation was miniscule. At least for once I wasn’t eating beans on a baked potato!
This afternoon I hid in my room slowly going mad from frustration, lack of sunlight, lack of socialising and a lack of purpose. My mother came and paid me a surprise visit where I unleashed the enormous rant I mentioned earlier and finally took in some vitamin-D, after all the weather was nice for the first time this Spring.
Having completed my rants, once to my mother and once on here I am feeling much better with myself. The typing has exhausted my slowing brain and I feel almost as though as I have accomplished something today.
If you have got down this far, thank you for reading.
Until next time. Bon Voyage!
By Angus Harper, the fed-up cripple.
AaaaAarghhh! Great rant!!
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Hi Angus. You don’t know me but I know your parents – it was our trampoline that ended up in your garden when our kids went to Uni!! So sorry to read your blog but good to hear that you have survived and are heading in the right direction – well done. Try and keep positive – you WILL get there. Might see you in the south of France next month. All best wishes. Tina (Salussolia )
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