Photo Challenge for CRPS Awareness, Day 10

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 10 – A picture of your something you’re afraid of

Well, initially Magic Dude took a piccy of a spider for me! *shudder* But this is a photo’ challenge for CRPS awareness, so I feel I would be missing the opportunity to share some insight on living with CRPS if I went down the spider route. (Plus, I’d keep seeing the spider picture as I flick through blog stuff and that’s not something I relish!)

As a patient with multiple chronic conditions with a large dash of progressiveness, fear is something I am used to. I don’t want to be afraid of what the future may hold, or other things that may ‘go wrong’ with us. Let’s face it – that would be a waste of my time as who knows what the future holds? And even if we could say for sure, dwelling on it means life passes us by and I’d rather live my life thank-you! 😀

So… let’s look at the immediate issue – what if an unplanned for event means that I end up in hospital? Most of us humans do at some point, after all!

If I do, the information the relevant doctors and nurses will require is quite simply only going to come from me. The likelihood of them having a clue about CRPS in it’s basic sense, let alone in it’s complex multiple system reality, is about as likely as every other doctor and nurse I’ve ever met….. either none at all or a wonky out-of-date version.

So…. what can I do about it? Carry information?

Sure, but carrying research papers with ‘read in an emergency’ written at the top of them is not really going to help matters if things have to be dealt with in a hurry. Medics have standard ways of dealing with specific situations and wherever I don’t fit into that I need to be able to highlight quickly and simply so that they can quickly and simply work around the issues.

I have a wallet card. Originally I printed off the RSDSA card (see my Useful Links page) but my condition developments mean that a pain-only information card is just not appropriate for me any more. So I made my own, printed it off and covered it in sticky-backed plastic to keep it legible in my wallet.

Every now and again I have to change or add bits. New health information or medications need noting. Loss of family ties (which is horrifically common for patients with chronic, complex and little understood conditions such as CRPS) means having to update the emergency contact if that changes, too.

There was some discussion in one of the CRPS groups the other day, about being prepared when we go out. A wallet card was something that a few of us mentioned and those that don’t currently have one were asking what we have noted down on our cards.

So, here’s my new wallet card I’ve been creating today. It helps to reduce the fear of inadvertent mistreatment by medical staff and thus reassure me that if they have the facts upfront they may be able to at least help avoid creating any new problems for me!

Elle and the Auto Gnome, Wallet card

Which, in close-up, looks like this….

Front of wallet card

Front of wallet card

Back of wallet card

Back of wallet card

If there’s anything you think might need adding to my wallet card, or aspects that might be handy to add to a general wallet card, or indeed any comments on this that could help others, then please do comment below as I am sure that your input will help fellow patients piece together what we each need to include on our own wallet cards if we’re going to create one, x

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Additional note added 11th June 2013:

My reply to a question about the non-adrenaline anaesthetic: Yep it’s CRPS related.. because our autonomic nervous systems are disrupted our ‘flight or flight’ mechanism kicks in really quickly over very little,.. we want to do everything we can to keep our nervous systems calm so that we can get through surgery / dental treatment / anything invasive with as little raised response as possible. Adrenaline is part of the fight or flight response, so we really don’t want even more of it in our body than is already being released under those circumstances. So using non-adrenaline (non-epinephrine) anaesthetic means that we reduce the likelihood of the body over-reacting which means less chance of spread or new issues in the area and less chance of a new faulty autonomic issue precipitated from the over-reaction, xxx

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