Thursday, 7 August 2014

How I got complex regional pain syndrome

November 15, 2008 was an interesting afternoon. The boys were outside playing in the sunshine, the 10-month-old was being pushed in the swing by my husband, and I was about to change life as I knew it forever simply by preparing an avocado for fresh guacamole.
The pain didn't happen right away, neither did the bleeding, but it was deep, real deep, and the knife came out bent at the tip.
I looked down at the palm of my left hand in dismay and thought 'I'm going to need stitches'. Calmly, oh so calmly, I walked up to my husband and said: ''Ummmm, I think I need to get this checked out''.
How did I go from working full time, being a supermum, having all these goals and ambitions within my corporate career to filling out an ACC medical certificate and being told ''well, after the surgery you should regain the use of your hand and that deep, cold, burning, pain plus numbness in your fingers will in time go". WHAT THE?
I was making dip, now I'm here, doing this! People like me don't do this. I don't have time for this. I have a huge project at work, I have stuff to get sorted, I just stabbed my hand. Stitch it, send me home!
Reality bites. In fact it slapped me in the face in the form of a chronic illness; a syndrome to be precise.
After six weeks of hand therapy, follow-up checks, more doctors tapping my hand with a pen, paper clip, etc  - to see if I could feel this or get pain from that, I got a diagnosis. Complex regional pain syndrome (CRPS). I'd never heard of that in my life.
(CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands or feet), usually after an injury or trauma to that limb.
It is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signalling from the brain and spinal cord to the rest of the body. 
CRPS is characterised by prolonged or excessive pain and mild or dramatic changes in skin colour, temperature, and/or swelling in the affected area. One knife stab to my palm got me that.
I can't accept this diagnosis. What do you mean there is no cure? This is not in the plan of things. Injury/illness doesn't happen to me. Not at 26 years old. Not after I have worked so darn hard at just being employed.
But it did and I'm here, and I hate it.
Twenty-six years old, three children, a husband, a nice collection of qualifications and after working three years in a corporate job, three weeks after landing an awesome gig in a records management role paying a nice salary, this happens. Why?

I have three accepted claims with ACC - complex regional pain syndrome, central pain syndrome and major depressive disorder with adjustment disorder (even has a spectrum number).Almost six years on I don't know the answer to that question.
I am in pain 24/7. For example, my brain thinks cold air is dangerous and burning deep cold pain starts in my left hand/arm, then spreads to the left side of my face where I get what feels like a vice-crushing-my-skull head pain.
Then the burning in the eyes starts, the pain that gravitates down my chest, sides and backs of my legs then gravitates down to my feet. The pain makes my right foot want to twist in like a baby's foot does, my left arm/hand wants to curl like a chicken wing and curls when I sleep.
At times the pain is so bad I slur my words. I lose my train of thought - remembering numbers, names, places is blank these days.
I had bladder problems for a while. I broke my right leg because I lost the feeling in my feet and didn't realise. I suffer from tendonitis in the right foot and at times it swells full of fluid. 
Fabrics make my body go insane. I get muscle spasms everywhere, I can't wear my wedding rings, my skin is thinner in places, I react to IV needles, I gained 30kgs from both medication and depression. I take three times as long to heal, my hair is brittle, and at times it feels like bugs are running all over me.
Relationships with family are not the same. Friends are like, 'wooooo, what happened to Sally? She stabbed her hand almost six years ago and now she's fat'.
We had another baby because in our vast research on how to maybe cure CRPS, pregnancy was a way of shutting off this disease temporarily. Yay, a pain holiday. Not for me.
I got pre-eclampsia, gestational diabetes and almost died from bleeding too much and my heart trying to stop.
However, we got the most beautiful little gift and a great distraction he is from this world of pain. He is 11 months old and a delight.
How do I manage this illness? With a sense of reality I guess. Live each day as it comes. Live for the now.
Future? What future? My future is no more promised to me than yours so embrace every second! 
I get depressed heaps, I get sad, and I grieve for me. But I also love, care and embrace all the people around me.
If life was over tomorrow, I would be proud of my life. I succeeded. 
I loved, I lost, I got drunk, did some stupid stuff, I had four beautiful boys, I got married, I got educated, I bought a house. I have been skinny, I have been fat, I have danced in the rain, I have driven too fast in life, and now I have slowed right down.
I am alive; a privilege denied to many - and I still like avocados.

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