Posted on December 9, 2011; Updated August 8, 2013
Why live with the Auto Gnome? And what is one of those, anyway? My original condition, CRPS, resulted in my autonomic nervous system (ANS) being faulty. In the last couple of years discovering what it really means to have autonomic dysfunction (dysautonomia) has become a dastardly rollercoaster of a ride that all medical practitioners had suspiciously avoided forewarning me about. But, as it turns out, it was mainly because they didn’t know, either!
My brain sees it like this…..dysautonomia…dis-auto-gnome-‘ere….this auto gnome here…..what the blummin’ heck is an auto gnome? And why do I have to live with one? Hahaha ha ha *sob* ha.
But the old ways of pain management that I worked through with the CRPS were about ‘control’, whereas the new wave of psychological advice is ‘acceptance’. Not a passive acceptance, that sounds so insulting when people say we should just ‘accept it’ doesn’t it?! But an acceptance of the health issues merely as the beginning to new ways of working… I then learnt as much about them as I could so that I can manage them much better (and every week I’m still learning more). My day-to-day quality of life has improved since I took this approach, and I enjoy kicking CRPS’ butt, hehe 😉
So yes, I live with the little blighter rather than try to fight it. Me and the Auto Gnome. No point in starting a losing battle when I’d actually like to live my life, so I try to work around the gnomic hassles instead.
Not that I don’t ‘control’ any more, I kinda have my own mix of the two approaches….
a) I control what I do and how long I do it for, to retrain (or at least rein in) the ANS wherever possible. And where it isn’t possible, which is with most of my symptoms, it’s to keep the ANS from having a wobbler and demonstrating just what hideous symptoms it can cobble together when it feels its been slightly put upon.
b) I do, however, accept the hand that I’ve been dealt. That doesn’t mean I have to like it. Doesn’t mean I don’t break down in end-of-the-world sobs or talk my boyfriend’s ears off from time to time. (Actually the boyfriend’s ears are regularly in use as I try to figure my newest symptoms out, but I do try to make up for it with cake offerings). (Not to his ears). We do what we can with what we’ve got. And I’ve got a list of symptoms as long as an orang-utan’s arm. So doing stuff can be a challenge, but (fortunately 😉 ) I’m a stubborn girl!
In this blog I write about living life despite the Auto Gnome. I write about tips, achievements, different approaches, studying from home; I write occasional silly poems and have a tendency to share my Tai Chi experiences along the way, too. My fellow patients are totally awesome, and I wanted to share some of my knowledge and experiences whilst having a bit of a chuckle along the way. Because silliness rocks. (And so do cups of tea. Yes, I’m British! 😉 )
I don’t give up. And that’s the key to it. With this condition we get knocked down with new additions to our array of problems again and again….. But we get up. We get back on with it. Basically we refuse to say die. (Though sometimes we do say arrrggghh). (Quite a lot).
It’s hard. Harder than I could ever find any words to describe. To start from scratch again and again because our bodies discover new tricks to incapacitate us with. The road from this point is so long and so arduous because it’s relentless. Both the endless physio’ to try to assist the situation, and the symptoms that batter away at us and our coping skills. But when we’ve done it once, as I have with the CRPS pain to increase my daily activity and reduce pain levels, we know something can be done. Maybe. It’s all a bit up in the air with each new thingymajig that develops until we work out exactly what it is. But surely it’s worth a shot?
So that’s it, that’s life with the Auto Gnome – endless symptoms, endless trying to work around the symptoms to do the odd thing here and there. Well, anything really, it doesn’t have to be odd! Just getting the weekly shop is an assignment worthy of a shiny gold badge. So we pat ourselves on the back for getting the boring stuff done, and sometimes we get to do something more interesting. And when that happens we take loooaaads of photo’s to look at when things get crappy again. Then we can relive the good’uns. 🙂
Inbetween times we like to find life as amusing and full of love as possible. Because it helps, x
So the Auto Gnome shadows me wherever I go, and I live my life anyway, x