We have a long old list of weird and wonderful conditions that my kids have collected in the last ten years, from epilepsy, to dislocated hips, to bendy joints, and knackered hearing bones. We have a chronic condition that lives with us, ensuring we have a daily battle with sugar levels and my diary is full for September with six fresh hospital appointments and check ups.
We don’t have it that bad. So many have worse. Plus all are curable or treatable – I’m not going to lie, living with a child with Type 1 diabetes can be hard, trying to be a pancreas as well as a parent has it moments; but she copes admirably and therefore I can walk happily in her shadow.
One condition stands out for me above all the rest. It is the one I loathe with a passion, the one we don’t know how to cure, where it came from, and how to make it better.
Complex Regional Pain Syndrome.
Its a bloody mouthful, as well a pretty shitty condition. It joined us in January/February 2014 affecting my eldest daughter’s legs, ankles and wrist, she officially went into remission in November 2014.
Not sure what it is?
I’ll let the NHS explain….
Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person experiences persistent severe and debilitating pain.
Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.
The skin of the affected body part can become so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain.
It was horrific to watch my daughter go from an active eight year old to a child confined to crutches to walk, who carrried an invisible illness that no one really understands.
The hardest bit was explaining to people that distraction is a key therapy. If you can distract her from the pain, she may momentarily forget it and ditch the crutches and walk. It was fleeting but it happened. As I celebrated those rare successes, others would simply question she ever had the pain in the first place.
“Do you think she is faking it” was a popular question back in our CRPS days.
I’m ashamed to say at times I even thought it – chronic pain is tricky to understand.
As said, we went into remission after months of challenging physio, psychology appointments, therapy and bloody hard work on Molly’s part; the crutches became a toy in the playroom, and my daughter learnt to run, jump, fly on a trampoline and conquer gymnastics moves as taught by YouTube.
Not having CRPS in our lives was amazing. Words cannot describe it.
Then six weeks ago, she started to limp.
Not all the time, but it was still there.
When asked why – she simply said it hurt.
I wasted no time, we dragged out our physio papers, got an appointment for the end of September (just in case) and we started exercising and working the joint to prevent a full on flare occurring.
She started to limp more.
Last week I suddenly realised I hadn’t seen her tumbling through cartwheels and doing handstand to bridge, or walking back bends for a long time.
I asked her why – she said it hurts.
In France last week on our holidays, we swam, we cycled, we climbed trees and rode quad bikes.
Every night her foot looked like a red beacon, swollen, angry and painful to touch.
The last two days in France she sobbed when she walked.
When we came home, she limped to the shed, found the almost buried crutches and brought them into the house.
“Just for when I need them mummy, I don’t want this again.”
She has needed them for two days, barr an hour when she pushed herself to join in her first CrossFit class with my amazing PT.
It’s back. I couldn’t be more gutted for her.
It is time to fight once more.