New hope and Colouring The World Orange

Posted Nov 9 2018, 1:45 am in , , , ,

Orange is not my colour. At best, it makes me look sallow. At worst, ill.

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.

Orange is the colour for nerve pain and CRPS is one of more than 100 (largely invisible) conditions that have nerve pain symptoms. 

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

Color the World Orange

Complex Regional Pain Fact Sheet

Ferocious Fighters (for young people fighting CRPS and those caring for them)

Living with CRPS

24 Comments

Comments

24 responses to “New hope and Colouring The World Orange”

  1. Lally says:

    I’m an emotional wreck after reading your heart rending blog Jen. With you all the way with loving thoughts and hopeful optimism for your month ahead.
    #TeamEnglishRose will always be here for you! Hugs 🤗

  2. Beth says:

    It was so good to hear English Rose’s condition pinned down, Jen. Whenever she feels like an afternoon or evening of cake decorating, I am here, as I know it’s one of the things that she loves (and is so good at!)

    • Jen Gilroy says:

      Thank you, Beth. We all appreciate your friendship and support. A few hours of cake decorating would be wonderful for English Rose. She says to tell you ‘thank you.’

  3. Linda says:

    Prayers, hugs, and love being sent your way!! XOXO

  4. This was a very moving and touching post, Jen. Living in constant pain is bad enough for an adult, but when I hear about children experiencing long-term chronic illness, my heart goes out to them, because they’re so young and all you wish for them is good health. My mother went through the same thing with my older brother who was born with a hole in his heart. Hospitals, doctors, specialists, etc. And it’s still happening–his heart gave out and he had a transplant this summer. But he’s on the recovery path. My dad and brother are currently living in Toronto. There is a good chance they might be home for Christmas.

    (((hugs))) and (((prayers))) to you, English Rose, and your family. You have such a positive outlook on life, a wonderful outlook full of hope that I know you pass on to English Rose. Give her a kiss for me.

    • Jen Gilroy says:

      Thank you, Maggie. Your kind comment has touched all of our hearts.

      Thank you too for sharing your brother’s experience. How scary for him and your family. I’m so glad to hear that he’s on the road to recovery and hope that he is indeed home for Christmas. My prayers are with you and your family too. *Hugs*

  5. Heidi Vanstone says:

    “Tough love” is hard enough with a neuro-typcial teen, but even harder with one who has a chronic medical condition! Although it must be incredibly hard to push English Rose to do “ordinary” things, in so doing, you are giving her a sense of positivity and a can-do attitude. Both will take her far in life. Bon courage!

  6. Danielle Hammelef says:

    I’m in shock. I’ve never heard of this scary chronic condition so you’ve educated me. I will keep you and your family in my prayers as you face the next steps. I admire you for your strength and you have inspired me today.

  7. I think of you and English Rose often and hope this new program you are both attending will help her. From my own life, I’m starting to get a better understanding of what all of you are going through and I wish you only the best.

  8. Kirsten Hesketh says:

    Oh Jen. I’m sending all my love to you and to lovely English Rose. I hope that the month in Toronto helps you all. xxxx

  9. Lynn Folliott says:

    Dear Jen, thank you for bringing attention to this horrible, syndrome and for bravely sharing your family’s story. I hope this coming month brings an improvement to not only English Rose’s quality of life but for all of you. Sending positive, supportive thoughts and much love to you and yours! HUGS

  10. Sylvia Pattenden says:

    Your family has endured much upheaval & frustration in copying with English Rose’s chronic condition. I admire your courage & strength as you try to be patient & positive. This new program sounds very intense & practical. Seems there’s a glimmer of light at the end of the tunnel.

    • Jen Gilroy says:

      How wonderful to hear from here, Sylvia. Thank you for your kind words. It has been a very tough time for English Rose and our family but this programme does indeed feel like ‘a glimmer of light.’

  11. Jen, thank you for sharing your family’s experiences and bringing this distressing and debilitating condition to people’s attention. Sending very best wishes to English Rose as she starts her time in Toronto. I hope she has a positive long-term outcome that will support her as she grows up.

  12. Tracy Brody says:

    Know this has been a long journey to get answers and the diagnosis is not what you want for your child since there is no cure to completely take away their pain. Will be praying the program helps her to live a more normal life and help conquer the pain.
    Hugs to you both.

    • Jen Gilroy says:

      Thank you for your prayers and hugs, Tracy. Knowing you have been holding our family up in prayer throughout this journey means a great deal and has helped bring light into some very dark times.

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