31/10/15

I used my sense of invention in desperation to find a way to get the bloody catheters in, and avoided a stay in Portuguese A&E.

A&E in a foreign country is no place for someone with my potential complications – it was frankly hopeless in a large London hospital a year ago when I had an extreme allergic reaction. It’s absolutely not that I fear a terminal outcome, more that I really don’t want it to be in a hospital corridor at 3 am in Faro.

On that subject I thought quite a lot when I spent 5 months in America about the possibility of being held up at gunpoint, either on the way to or from the hospital, or whilst in my less than desirable ‘hotel’. Over and over in my head the same scenario played out – spaced out gunman holding a gun against my forehead, asking for the money, or he’d pull the trigger, and me smiling and saying no, do whatever you want with that gun.

But I was never in the right place at the right time, it turned out, to enact it for real and see what happened next.

 

Lily and her lovely friend Ella definitely enjoyed our short half term trip to the sun.
Ella’s lovely mum, Cress, helped me with lots of stuff, making it all possible ( for me )
My state of mind doesn’t lift, as I’ve previously said ‘ on holiday ‘ as I’m not, in the former sense of the word.
The challenges of being in situations not suitable for myself unnerve me, the opposite of the reaction I’d get pre injury.

 

This week I had an assortment of unpleasant issues ( any one of which would completely ruin a trip for a healthy person ) but that now are the new normal for me. I get through them as usual, but despise them nonetheless. I don’t think I’ll ever get to the point where they don’t matter to me. At the moment I’m on the flight back, after being semi carried onto the plane. My legs are twitching, my stomach is bloated, yet I can do nothing about it.

Nothing at all, except accept it, accept that it’s how it’ll always be, so crap compared to before, when it was just sitting down in a cheap and small seat on an economy flight.
Before I was totally indifferent to cramped airplane seats; now I’d do anything to feel the ‘normal’ joy of an Easyjet flight.

Nobody looking at me would realise that there was anything wrong at all, except maybe that I was moving my legs somewhat erratically.. unaware of my complete lack of control over them, or my total inability to move from this row of seats by myself.

Lots of people carry on with the attitude that ‘at least I’m alive’. Do I feel that way? I can’t say that I do. I don’t feel alive. I have the misfortune of knowing exactly how that feels, and it’s not this.

I tried no alcohol for a whole week ( not difficult to do ) as I was curious to test the effect on my mental and physical state.
Verdict : no benefit in abstaining. None at all. I had more problems than usual, actually, to my surprise.

It won’t hold water as a clinical trial, but on the basis that it doesn’t help ( me ) to not drink, I’ll continue to exercise that option whenever I get the urge.

Dani had recommended that I read my own blog, from the start, saying that it would benefit me ( she read it all, recently ). I resisted for quite a long time ( just based on instinct ) then caved in and started at the start.
I read as far as the second week of August 2013, only 7 weeks into my new ‘life’. It took me back to an awful time, of near death and coma for me, of other people’s guarded optimism/ of the use of humour to disguise the awfulness of the situation / of the evident stoicism by some, including Dani. I didn’t read the word ‘paralysed’ once, it’s obvious use having been avoided ( optimistically ? ) completely.

I’d got to the bit where I was writing the blog myself, clearly in some hope that all was not lost, that some hope remained. The medics didn’t ever say to me that I had zero chance, even though I think it was pretty obvious to them.

I was reminded of just how many people came to see me in Toulon. Some of them would have thought they were probably paying their last respects, that being the medical likelihood for a while; some would have been realistic inside yet optimistic outside, and some for sure just certain that I’d make a full recovery ( I got quite a few cards saying ‘get well soon’ ).
There were countless emails expressing concern from an awful lot of people, offering whatever help that could be given. In some cases that was the last time that they got in touch.

I didn’t smile at the images, the positive faces, the amount of effort that had been made for me, rather I wished desperately that I hadn’t put so many people to so much trouble and pain.

I’m sure my story and the way it’s been told can and will help other people to understand this ‘process’ but for me to relive it at the moment is too painful.

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