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
Elle and the Auto Gnome 
Gnomes – nasty little buggers! And don’t get me started on bears – pretending to be all cuddly and cute and then it’s “Raaaaar!”
I hope you get lots of shiny gold badges!
Hehe, thanks Rory. I should think Bertram may have found it easier to track me if I’m clanking multiple badges down my sleeves, doh! I shall expand upon the Bertram Experience once I’ve dug myself out of this pile of research papers! x
what a really useful webby, now i can fully understand what pain and suffering you are going through and fellow suffers. Is there a charity maybe you could put a link to it on this wonderful page of yours???
Thanks Toni,
I’m chuffed you found the weblog useful. I really wanted to have info’ on here as well as the blog, there are more blog posts coming soon. 🙂
I don’t know of any RSD/CRPS charities in the UK any more. ‘RSD UK’ closed down in 2008. I found a charity relating to neuropathic pain, but there was no mention of this condition at all so they’re not raising any awareness or, presumably, doing anything regarding this condition. Under the wider heading of Dysautonomia I found ‘The Dysautonomia Society of Great Britain’, but on closer inspection it’s just talking about the hereditary developmental disorder where nerves don’t develop properly, rather than a healthy ANS going on the blink at some random age owing to injury. So, nope, having had another search, there appears to be nowt charity-wise in the UK that I can post a link to. But I shall keep checking from time to time in case one pops up, x
I just found out there’s a new UK group. It must’ve taken a while to get bumped up in the online searches, but now that I know it exists I shall post a link on the main page, xx
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Really love the light and comical way you played on autonomic dysfunction.. makes me want to get a little yard Gnome.. that way i can blame him for my bad days…lol. I am a fan. And will read your blog from my command center (my bed) where i spend most of my time… thanks gor the smiles
‘Command Centre’, I like that! Mine is my sofa (complete with blanket, hot water bottle and nearby cup of tea)! Lovely to meet you Kathy, here’s a big seasonal hug from me, x
Hi Elle,
I live in New Zealand and finished up starting my own group, the reason I mention this is I totally love your site and would like your permission to share your page and some of your links.
You have such an amazing way of putting it, like myself I try and flip the coin over to find the shiny side. I am one of the very lucky Crps suffers though as mine got caught early and is under control a lot more at this stage due to early intervention.
Amazing attitude you have, you are such an inspiration!
Totally going to follow you! Lol
Thanks again, you have made my day!
Hi Denise, congratulations on creating your own group, I’m sure it will make a fab’ difference to all those who come into contact with it. 😀
Definitely feel free to post anything links that you think others may find useful, it’s exactly what I created it for – to help fellow patients wherever possible.
Much love and my very best wishes, give me a yell if I can ever be useful, x
I love your sense of humour Elle and your fighting spirit. Hope you are doing ok, don’t see so much of your posts these days? Ive got long-term CRPS too, sure is a ……bear!
Heh, yeah, at times it’s a total bear, eh?! Thanks Paula, I am still around but the house we moved to needed building work which is getting done a bit at a time and so also a lot of ‘doing up’ which kinda feels endless right now. It basically means a tiny percentage of my physio time is getting spent painting a small corner of a wall before I run out of time and the rest of it gets swallowed up with the mudane stuff. I’m defo going for the tortoise speed over my old Way of the hare! My processing has been appalling though as my immune system has recently decided to join the list of Doolallies so I’ve written blog posts and then struggled to figure out if it makes sense. I am looking forward to having a couple of rooms complete so that I can sit somewhere without getting impacted by building dust and paint fumes. Then the waffling shall continue, oh yes! 😉
Big low pain hug to you my fellow CRPSer xx
I have many of these symptoms and have been hospitalized frequently recently for random events they can never find a concrete diagnosis for……
I’m so frustrated and tired of feeling crappy and no one listening to me holistically speaking.
Thank you for coming forward and speaking, it helps so much in my journey to figure out what is going on!