Monthly Archives: December 2016

Before We Begin…

Gah! I’ve been trying to write this blasted blog for so many months now, and it is driving me crackers! How many of my Facebook friends have heard me say that I’m working on it, not knowing that I’ve written the equivalent of two Word pages, and deleted the whole shebang, about seven times every time I’ve attempted the sodding thing? That’s about…oh, I haven’t really kept count…erm…*tries to remember the times table*…four hundred and eighty pages!

Right, this is the situation: I was very, very ill last year. Most of you know that. What you don’t know is how and why I got into that state. The state being, at the end of my stay in hospital, expected to die within the next 24-48 hours, and deemed no longer able to be helped, much less saved, by medical intervention. A scary time for a lot of people it seems (thank goodness for my family and friends), except me, as I had no idea whatsoever what was going on during the worst of it.
To recount everything that happened takes a bloody long time, which is why I’ve been struggling so much. Where do I start? How do I start? How do I write it? How much or little detail? Having to be open about private things. See? It’s no easy feat.

There is a reason I want to share what happened – not to get sympathy or to be called brave (let’s be honest, all I did was have my organs go bum upwards!), no. What I want to tell you is a cautionary tale; we (me and my family) have learned a LOT during and after our Series of Unfortunate Events and, frankly, I would far rather pass on our lessons than have any of you lot out there in FB land, with or without EB*, learning these lessons the way we did. Because it was horrible, painful, scary, isolating, bewildering, depressing, debilitating, life-affecting, and “downright f***Ing dreadful” (description courtesy of one of my parents). That’s why I’m asking that you read the blog post, when it comes along, because it might just mean that you don’t have to go through weeks of misery.
It is not intended as a horror story, okay? It’s intended as a “this is what I wish I knew”, but I have to tell the story to be able to tell you why I wish I known several things.. *and breathe*

*(though I suppose folks dealing with EB [EDIT: And my ’Spoonie’ friends, who have visible and/or invisible illnesses and/or disabilities. If I’ve termed that in a way wrong or offensive, do let me know, please?] might be more likely to find it useful)

I’m going to say TTFN, and get started on the main post, but I’ll just let you know this: coming next is a weeny post, explaining two things that will pop up in the main blog post – one repeatedly – and you really need to know about them for the proper post to make sense. I want the big ‘un to flow well, I’m going to get those out of the way first.

 

‘See’ you again soon
xxxx

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Filed under Catching up, Disability, EB Etc