Yet, this month (dubbed NERVember by the International Pain Foundation), I’m taking pride in wearing orange to raise awareness of Complex Regional Pain Syndrome (CRPS, also known as Reflex Sympathetic Dystorphy, RSD), and support those, including English Rose, battling this incredibly painful and little-understood neurological system disorder.
Before January 2016, I was a mum of a seemingly healthy tween. Life had its ups and downs, but apart from regularly scheduled check-ups or the occasional minor accident, doctor and hospital visits were blessedly rare.
Then, one day, everything changed and life and mothering would never be the same.
English Rose rolled her ankle in school gym class. A few stretched ligaments said the ER doctor at our local hospital. She’ll be fine in a week or so.
Yet, the pain didn’t subside. A minor fracture said the orthopaedic specialist. Give it six weeks or so and she’ll be fine.
But the pain got worse. Don’t worry said our then family doctor. Everything looks okay.
And yet, the pain got even worse…so bad that my usually stoic daughter was screaming in agony and couldn’t even tolerate the weight of a light blanket on her swollen foot and ankle, now also a blotchy patchwork of red, white and blue.
After a trip to the emergency department at the children’s hospital 90 minutes away, we got what I thought was an answer. Little did I know then that a diagnosis of CRPS was instead the start of a long and complex journey that will shape the rest of English Rose’s life, as well as mine.
In brief, that ‘minor’ ankle fracture triggered a malfunction in English Rose’s central nervous system resulting in incorrect pain signals being sent to various parts of her body. And as she now battles the most painful condition known to modern medicine, a 45/50 on the McGill University pain scale, our family is living with a ‘new normal.’
Life is a round of doctor’s appointments and hospital visits. And, since numerous other conditions are linked with CRPS, I have become an acronym expert, attuned to new symptoms that might signal an addition to what is already an alphabet soup of diagnoses.
Although I didn’t follow my late mom into a nursing career, I’ve also had to become an armchair pharmacological and medical expert, versed on side-effects, new drug trials and research about a condition for which there is a possibility of remission but currently no cure.
Perhaps most difficult of all, though, is that I’ve had to master tough love, pushing English Rose out to school and other activities to help her live as ordinary a life as possible—pacing her life but still living it, despite disability.
When you give birth to a healthy baby, you give thanks.
And each day that your child is healthy, you also give thanks.
But when life changes and you end up on a path you never expected to be on—parenting a child with special needs— you have to give thanks, too.
There are friends and family who support you and your now teen with a listening ear or caring message, a hug, a meal delivery, or who offer to spend a few hours with her so you can take a break from ‘on call’ caregiving.
There are doctors and other medical staff who listen to your concerns and try to get to the bottom of a chronic condition most have never heard of, let alone understand.
There are teachers who help make your teen’s school life more manageable.
There are organizations (like Ferocious Fighters) where you can connect with other parents and caregivers and your young person can get support as well.
And most of all, you learn to give thanks for the good days—the times when you can do things you once took for granted like going out to a restaurant, or to a museum, movie theatre or shopping.
This week, 5 November was #ColorTheWorldOrange Day and many landmarks around the world (including billboards in Times Square in New York City, Toronto’s CN Tower in Canada, and the Emirates Spinnaker Tower in Portsmouth, England) were lit up in orange to raise awareness, and support and give CRPS patients and their families hope.
For our family, that hope has sometimes been in short supply. Yet, for this next month we’ll have new hope and new reasons to be thankful, and it’s not only through initiatives like #ColorTheWorldOrange.
This weekend, English Rose and I are heading to Toronto for a month where she’ll be treated in an intensive programme for adolescents at a specialist rehabilitation hospital there. The only one of its kind in Canada, the programme has a good success rate in helping teens like her have a better quality of life.
For my daughter and all those suffering with CRPS, I’m not giving up hope and I’m wearing my orange, not only in November but all year round.
Unlike Floppy Ears, who with her autumnal colouring looks gorgeous in orange (and curls up on English Rose’s Ferocious Fighters blanket whenever she can), I’ll never look my best in any colour that echoes a pumpkin!
But from shoes to jewelry and other accessories, there are many ways to incorporate a bit of orange into my wardrobe.
And the fashion possibilities are, like my hopes for English Rose’s future, without limits.
Find out more