About

Posted on January 28, 2012, Updated December 18th, 2014

A very good long-term friend suggested that I start this blog. I suspect that a couple of other friends may have suggested it before and I was just too good at changing the subject! But she must’ve got the timing just right as here I am!

Despite having CRPS(Complex Regional Pain Syndrome) for over 14 years and developing other autonomic dysfunction (dysautonomiaissues along the way, I firmly believe in hanging on to who we are despite the massive changes that chronic illness creates. Core identity, like my morals and loves, are easily unchanged. But a lot of who we are is wrapped up in what we do. And when we can no longer do what we used to, things can get tricky. But it is work-able. Honest, guv’!

It’s about hanging on to who you are in your head and your heart. We may not all be able to get out and party, but we can keep silliness and self-expression in our lives. If I have mundane, pain-filled days it gets me down. I need some silliness and laughter to pick me up again. It doesn’t matter if it’s mis-hearing an advert and laughing out loud, playing a computer game, planning something silly for when I’m less painy again, having a silliness fuelled chat with a friend on Skype – anything that is light-hearted and doesn’t involve moving at the time. We have enough to deal with as it is so it’s always good to have a distraction and a chuckle when we can.

In this blog I write about living life despite the Auto Gnome. I write about tips, achievements, different approaches as well as bits of medical info’ and research; 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. –  Yep, I’m British! 😉 )

So here’s a few links to get you started, I hope that these can be of use, xx

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CRPS Frequently Asked Questions (FAQ)
– also a lot of Dysuatonomia relevant info’ in the FAQ too

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Sidebar, Why I also live in Cyberspace

 

Sidebar, Health variabilitySidebar, What I take to my doctor

 

Sidebar, dentist appointments

 

 

 

McGill Pain Index, final 2

The Tilt Table Test

Autonomic testing (inc. the Tilt Table Test)

 

 

 

 

 

 

Oh and silliness, let’s not forget the silliness…

CRPS critter

If CRPS was an animal…!

 

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6 thoughts on “About

  1. Luv it. Love your whole attitude. Silliness is a highly under-rated management technique. So glad you decided to start the blog and looking forward to reading more.

    PS the fact you used ‘guv’ in a sentence just made my day 😉

  2. What a lovely and inspiring blog! I’ve got it here via OU newsletter link and I now know something about CRPS condition. Thank you Elle and the Auto Gnome, keep this excellent blog up! Best wishes, X, A.

    • Thank-you so much for your lovely message, Aline. It’s lovely to hear from a fellow OU student, my very best wishes to you for your studies, x
      I shall definitely keep up with the blog, in between TMAs, of course! 😉

  3. Hi I don’t know if you still use this blog but I found it helpful and informative although I don’t have crps I have suffered amounts of pain and a bazillion other symptoms for over 10 yrs, and am only 25, I kept it to myself for a long time after being labelled a hypochondriact by my parents and thought everybody felt like this until I reached the point where I couldn’t bear the thought of living like this forever, I feel 85 now lol! After being diagnosed yong with ibs and later thinking thinking celiac crohns and other tummy situations and having a camera I was unhappy with having and other pointless prescriptions of tummy cramp pills and ibs info leaflets etc, a rheumatologist finally diagnosed me with hms i was so shocked i didn’t ask any questions just accepted and walked off. Now i finally have an answer, something other than ibs…like stomach cramps are a problem when you feel like this! I quickly booked an appt with my gp and saw a new doctor who happens to have a daughter suffering same problems and gave me hope and information galore! I feel that I’m finally diagnosed not crazy and that although not cureable any problems can be eased with all sorts of methods and who cares if its a struggle the last deacade of my life and more have been a struggle and its now time to start living and stop feelijng so guilty for my 3 young children that mean so much to me . I do have a question though nobody as of yet has mentioned any sort of hms specialist just the tilt table situation and I have been prescribed tricyclic anti depressants to treat the situation by the rheumatologist could this be she is knowledgable in the field herself or do I need to see a specialist? Thanks for your time and making me chuckle a few times the making it up with cake but not in his ear was my fave so funny! Take careeee x

    • Hi Stacie, yep I’m still here and will be back to blogging soon (I’ve just been spinning far too many plates recently so far this year)!

      I am so so soooooo pleased that you finally have a diagnosis after all this time. It most likely helps enormously that your doc’ has experience with the condition in her own family, many doc’s just don’t have the insight otherwise. I would discuss specialists with her next time you see her in case she’s not so aware of the additional clarity it can bring. Through that conversation you can decide between you whether you’d like to see a spec’ as well. (There’s a link on the ‘Useful Links’ page to the DINET list of dysautonomia physicians which, although not exhaustive, can be helpful for starting us on the search for spec’s in our geographical area).

      I would also double-check that your medical notes clearly state why you’re on the meds. I find that all medical staff assume that ‘anti-depressants’ are for depression only (hardly surprising considering that they get called ‘anti-depressants’ 😉 ) but this can make them jump to unhelpful conclusions and/or ways of dealing with a patient they assume suffers with depression. It helps hugely to have it highlighted when they are prescribed for pain and/or autonomic issues.

      If I can ever be helpful just let me know. I’m cheering you on from here 😀

      P.S. Thanks for the cake mention coz it’s reminded me to plan some physio’ time to bake one! He’s been super awesome helping me more and I’m pretty sure he’s overdue some cake treatment! 😉

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