Finding my voice

I have a dilemma.

Over the new year, my parents both individually suggested, again, that I share my story.  This has been something that has been going on for several years now, and comes up with each new diagnosis I receive.  They think that I might inspire people living with chronic illness and perhaps help a little.

To tell the truth I do want to do that.  But I am having problems with so much of it.  Firstly, I’m not a writer.  I’m actually a speaker.  Ask me to make a presentation, be it to 1 person, or 1000 (and I’ve done both) and I’m in my element.  Ask me to write something and I’ll stare at a blank screen.

So often I open up my computer and sit watching the cursor blink in the ‘New Post’ box.  I know what sort of thing I want to say, but I struggle to find the eloquence with which to say it.  A mere quip aimed at me in a supermarket can result in a super fast witty comeback.  Just what is my problem?

Is it too much pressure, that my desire to write all these things that I have been mulling over in my head for years is actually stopping me from just sitting down and doing it?  Likely.  More likely is my crippling fear of failure.  It has to be good.  I’ve got to be good at something.  I see my friends making the best of their lives with chronic illness, they all seem so talented.  What’s my talent?

If I listen to the general consensus, my talent is that I ‘just keep going’.  Well, isn’t that what you do?  Why do I seem to attract such comments about this from people?  This is why people tell me to write it down, to go out and speak about it.  But I just don’t understand.

I’ve always had ‘something’ wrong with me.  So, it wasn’t diagnosed until I was in my teens/twenties, but it was always there.  Consequently I’ve always been tired, I’ve always been in pain, I’ve always been coming down with one thing after another.  Apart from the drama in the few months prior to my diagnosis, I have always stuck close to my baseline so that I don’t have huge ups and downs.  There is no sense of loss, because I never lost anything.  I never had it to begin with!  Hmmm… this doesn’t sound like a particularly scintillating story, does it?  Just. Keep. Going.  Oh there we go, written in 3 words.  I must have attended the Widdecombe school of authorship.

Conversely, I could never tell people how to take care of themselves.  I stay up too late, I don’t eat healthily, I ignore my food intolerances more than I should for the sake of satisfying cravings (and my budget), I forget my pills, the list goes on.  OK, so I might think about things a little differently (Ok, a lot differently), but that’s not enough, is it?!

Then there’s the approach to take.  When I was pregnant I didn’t read “What to expect…” etc.  I read a hilarious week-by-week account of pregnancy.  Facts interspersed with humour.  My Dad thinks I should take this approach, being a fan of my lie-down comedy via Twitter, and even suggested a working title of, “Oh f**k, what now?!”  My Mum prefers a more autobiographical approach, telling my story in a more straightforward manner and offering advice through my own experience.  Well, what to do?  At least they are of the opinion it is worth writing about.

I just find I currently spend so much of my energy trying to live ‘normally’ – working, looking after James etc. that I don’t have the energy to sit and write.  I have notes.  Lots and lots of notes.  I make them at work when things are slow, or when a thought strikes me as worth considering.  But by the time I get home it just gets added to the pile and I’ve got to think about hoovering, or changing beds, or laundry, or what to cook for dinner.  I tried to set up this blog to keep my hand in, to find out what my style was going to be, I’ve tried soapbox.  Can I even make having chronic illness funny?  I worry it’s only possible if I go into the realms of TMI.  Do I go there?  I struggle to even write here at the moment.  What is the point, exactly?  10 years ago I wrote reams, my story was all but told in full, people were reading it, commenting, admiring.  And nowadays I have even less energy and 100 times more pain than I did back then!

I’d dearly love to be at home all the time so that I could organise my thoughts enough to get up and running.  But I need the money, and I could hardly write about how to keep going if I’ve packed it all in just so I can write about how to keep going.  Not when there aren’t any guarantees in this world.  Does the world even need another book on the matter?  Oh hello, there’s that fear again.

Hardly inspiring, is it?

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