Updates and excuses PART III: The Name Game...

The name of Pain may be CRPS, but it doesn't automatically mean that any and all other unexplained pain would always be CRPS too. Logically, we could reason it as follows:

a) CRPS can spread beyond the original site in some people; (true)
b) I have CRPS in my arm and new Pain in my legs - my Pain has spread beyond the original site;
 THEREFORE - These new Pain symptoms in my legs must be CRPS (logically true but it is based on the assumption that there are no other causes to Pain)

It is an easy assumption to make, but to rely on this assumption would be dangerous without evidence. What if there was a life-threatening problem that ends up ignored because it mimics symptoms of a condition you have already? You can see the danger. It's such an easy one that even I made it. Granted, it felt very similar. This new Pain was largely untouched by pain medication. I slept without covers on my legs because it was too painful, and showers were becoming more uncomfortable - and dangerous until I got a shower stool. I started wearing lots of skirts and stockings instead of my usual jeans, and was thankful that it was coming into summertime. I wished I could go barefoot in public without fear of stepping in glass, dog shit or being impaled through the foot with a stiletto! Being touched was enough to send me through the roof, and my usually sparsely-haired legs took on a more hirsute hippie vibe. This was rather annoying, especially with the very pale skin tone (I never had much colour variation, not being fully caucasian I don't even turn a proper red when sunburnt), it stood out even more. I couldn't do a sugar wax or even run a razor over my hypersensitive skin. Yes, Pain and disability, and yet we still have time to be vain! Actually, it's not all about vanity. I discovered with my arms years ago the exact reason we as a species used to be more hairy - because each one of those hairs can pick up and read sensation from our environment. Each hair follicle could pick up minute changes in the same way as cats' whiskers, or the way insects detect movement close by. For me, each one of those hairs were made of tiny fire ants, biting the living blazes out of my legs while they were crushing them to a pulp from every dimensions!

It sure felt like CRPS!

CRPS – The Dutch Way: “Evidence-Based Guidelines CRPS type I” and possibly halting the early stages of CRPS in its tracks

The interesting part of living in a foreign country is seeing that there are different approaches to treating CRPS. Not that one country necessarily has the edge over another, simply that there are subtle differences in viewpoints that can bring forth an entirely different perspective. I am an Australian, living in the Netherlands, and have been here for years now. While some aspects of the Dutch medical system may seem somewhat lax at times and I've had many gripes with these sometimes infuriating differences; what I really found interesting was the research that they have done in the field of CRPS. Their approach differs somewhat to what I had been through, or found about about over the years. It has been getting great results in treatment of acute-stage CRPS, sometimes halting progression and even reversing the changes and the Pain!

"Mysterious CRPS condition hits home for INSIDE EDITION Reporter" (video link):

I saw this video on the facebook page of Chronic Pain Australia. It's a short piece showing the experience of two young people living with CRPS. What life is really like when you have this very rude fiend gatecrashing your party.

For me, it was uncomfortable to watch. I couldn't quite grasp why I felt this way; after all, it's what I live with too. It hit me suddenly - I don't view it from the outside. This is what my loved ones see. While you're the one experiencing it from the cheap seats, it becomes somewhat normal to you. For the ones who love and support you, I don't think it can ever become 'normal'. It must be horrifying for them to watch and would have a huge impact on them. It certainly had an impact on me too.

Updates and excuses PART II: THE BLAME GAME

Blame, faith and the peculiar perils of positive thinking...

In general, I try not to blame others or the world for things that go wrong. There seems little point; it doesn't achieve much, other than making you feel even more hard done by. I may have already mentioned before that my mother tells me all the time: Shit happens! That for years she has told me to tattoo it on my forehead so I don't forget! Shit does indeed happen; blame is pointless and doesn't always lead to action. And action is the quickest way out of the shit that is happening (or even away from the shit that's hitting the fans, or flowing in the creek you're stuck on without a paddle!)

In the aftermath of the CRPS spreading not only down to my right leg, but into both legs; I wondered for some time if I was to blame for this happening. Was it my fault for skating and cycling like a madwoman possessed? Was it my failure that Pain was beating me again? Could I have prevented this by taking more care? I should have known better than to go on the ice. I have CRPS; I knew that another injury/trauma can cause a spread. I was stupid to ice-skate in the first place! All this now: my arms, my legs – this is all my fault!

I think that when anyone has an illness or condition that is out of control, one of the first thoughts we have is: Did I bring this on myself? This implies that when shit happens, it must be because someone is actually doing the shitting. However, the shit in this increasingly unpleasant image, doesn't always necessarily follow from anyone doing this... metaphorically.

Updates and excuses PART I: THE SHAME GAME

And yes... the shame of making this post some 2 1/2 years after the last, my biggest shame of all!!!

It's strange how fast time passes, especially after you hit 25! Pain and I have been together for 13 years now, though it feels like yesterday I was celebrating 10 years. A theme of this piece is relationships that come and go. Strangely, of all my relationships and friendships over the years, I have probably had a relationship with Pain longer than I have known many of the people I know now - Pain and I seem married for life now. Brings a whole new meaning to being shackled to the ball and chain...

 These past few years have been some of the biggest challenges I've faced so far. Perhaps not as difficult as the early years of CRPS, when I didn't really know anything, nor had any experience to draw upon. What I had hoped simply never would happen, has now happened and has become the biggest challenge to my own sense of self. Losing the battle with CRPS. It has spread to my legs now. And I have felt like a huge failure at times, for letting it take over so much of my body!

As someone who values independence in the same way as I value necessities such as water and food; I've needed to adjust what I define as “independence” in order to continue being, well... me. In the early years of having it in my arms, no matter how horrible it was, I still could run away. Maybe not from the pain, but in the physical sense of moving my legs in order to get me somewhere away from wherever I was standing. Now I have CRPS in all four limbs; though it presents more severely in the right side, I seem to have run out of spares!