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2010 Archive 15: My Reality Sucks

Stiletto Wheels Blah Blah

I haven’t been writing so much in 2010 because life has been frustrating due to a series of small setbacks that have merged and forced my compliance with more of the life style limiting restrictions imposed by my illness.  I have just had to suck it up … no immediate solutions, no workable way round it.

I have literally left the house no more than a dozen times in five months.  I suppose I should be grateful that this is not the ‘norm’ for me but of course, I am not.  I am just isolated, bored and grouchy.  Reality sucks  … and how dull is that?

My confinement has been caused by sundry, successive, minor health problems, followed by a sudden, severe relapse in my neuro condition combined with EaZyD crocking himself and the non delivery of the wheelchair accessible car which was meant to be with me mid March (current expected date is mid-end of June!).

It has been a period where I have been shocked all over again at how fragile my grasp is on a ‘normal’ life and how incredibly grindingly difficult it is to sustain any semblance of it, especially given the physical toll it imposes on EaZyD whose fitness and physical strength we have taken for granted.  In the past year, after more than a decade of lugging me about, he is really feeling the strain on his back – and that is not OK.

Of course, we have tried to find solutions but nothing is easy and everything is expensive.  I hate the dependence, the lack of outside stimulus and the restrictions with an undying passion.  I feel so peripheral in this world and such a burden.  I cannot help but wonder what the point is?  And, I have no answers, so, no writing …

It’s taken me a couple of weeks to actually sit and write this because, ya know, I’m just bored with it.  Bored with illness.  Bored with things always going wrong.  Bored with arranging to go out and some stupid health problem flares up and I have to cancel … again!  I try to be upbeat but  … oh, I know – feeble, whine-y ass shit, yeah?  Bite me!

This year, the worst of my problems arose in August, over the Bank Holiday weekend.  I had a bath and part way through the [tedious] dressing process  – we were about to go and see the Alice Neet exhibition at The Whitechapel – I felt dizzy.

Struggling to sit up, I started vomiting … and carried on doing so for fourteen hours!  Couldn’t open my eyes without more nausea; couldn’t keep even a sip of water down.  I was literally hours from being hospitalized … and if you’ve read much of me at all, you will know that I am only willing to go there in a coffin!  I hate hospitals.

Blah, blah, blah, GP, acute episode, prescription medication for the symptoms, stay very still (ain’t that a stretch for a very paralysed person!), will resolve itself eventually, blah, blah, blah!

I hate this.  Another Bank Holiday weekend,wiped out … and now, I haven’t got time to see the Alice Neet at all as it ends on 17 September.  How many things have I missed through illness?  I am so sick of this in the way John Cleese’s parrot was dead.  Sick.  Sick.  Sick. Sick of it.

It took me about a week to recover and I am still very wary about moving my head at all.  Even worse, having happened once, it is likely to recur … and do they know why?  Of course not!  Anything preventative I can do?  No, or don’t put yourself in positions that bring it on.  Brilliant.

Benign Paroxysmal Positional Vertigo (BPPV) (GP says I have this.  My consultant says not – it is ‘obviously’ part of my neuro illness symptoms.  I have no idea who is right.)

A term to describe vertigo that comes and goes (paroxysmal), without a specific associated illness (benign) … the episodes are frightening and difficult to predict … and are related to the labyrinth system inside the inner ear that is responsible for maintaining balance in the body.  There can be associated nausea and vomiting if the vertigo is severe enough.

After the symptoms have gone, some people have recurrences.  Occasionally, symptoms persist for months or years and cannot be eased. Fabulous.

Oh, don’t worry, no pity party here.  I’ve had treatment, EaZyD is better for now and the new car is on its way.   I know, too well, that things could be worse but, nevertheless, as life goes on outside of this house, without me in it, for all my friends, family and EaZyD, I do feel like I am only breathing and existing rather than living and it just doesn’t feel … like enough.

Apart from this, 2010 was a ‘usual’ year – one hospital visit for treatment in May, then the dizzy stuff, something of a relapse kicked off in November but I figure’d I’d hang on a bit for my next hospital visit (and hope like hell that I am able to avoid most serious bugs for the rest of winter!).

I did manage to find a great chiropodist which helps stabilize relations between me and EaZyD – who is good at many things … not including feet!  Other than his own!  Umm, TMI, so, moving on …

The frustrations of last year continue.  I chafe under the constraints imposed by my ill health – the waking everyday, cursing, in pain: the teeth gritting ordeal of undergoing all daily activities in said pain and difficulty: having my social activities dramatically curtailed by … oh, yeah … that’s pain and difficulty again.  Chronic illness, huh?  Wouldn’t want y’all to think it’s easy as I wisecrack my way through it.

Enough with the moaning, I hear you cry and I feel you, man.  Moaning sucks!  So, I’ll end with a story (precis’d from an email) about an experiment, carried out by the Washington Post in 2007 which, in brief, involved a world-famous violinist, Joshua Bell, playing, incognito, as a busker at a Metro subway station in Washington D.C..

Bell played some of the most intricate Bach pieces ever written, continuously, for about 45 minutes as around 2,000 people went through the station, most of them on their way to work.  After he finished playing, silence took over. No one noticed and no one applauded. There was no recognition at all.

Only 6 people had stopped and listened for a short while. About 20 gave money but continued to walk at their normal pace.  Several children stopped to look at him but were pulled away, still with turned heads, by parents forcing them to move on quickly.

Joshua Bell collected a total of $32.

We all do it, don’t we?  Rush through life – busy, preoccupied, stressed – missing the moment, the people, the essence of now!

Why not join me and make 2011 the year that you take time to enjoy the journey and those you meet along the way; to enjoy Life … it has an expiration date; and, to enjoy the magic of every moment.

Happy New Year.

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