Today is International ME/CFS Awareness Day.
I’ve written a lot about my experiences living with Chronic Fatigue Syndrome and Fibromyalgia. I was diagnosed at 12, and the first 5 years were the toughest of my life.
Back in 2010, I wrote another post for ME/CFS Awareness Day about how art helped me find purpose in my life and gave me a reason to live again.
In a way, my illness and my art are interdependent – without getting sick, I think it would have been a long road to my art. Without my art, I don’t know if I could have moved past being sick to building a better life.
I can’t say that I’m grateful for having a chronic illness – I can only say that without it, my life would have been very different and that I love the life I have right now.
But I like to think that I would have built a happy life, no matter the hand that was dealt me.
So today, instead of talking about how hard it’s been (and lord, some days it’s been hard), I want to celebrate the delights in my life. I want to talk about the good things that have happened the past 11 years.
I have spent time honouring the difficulties. Now I want to honour the achievements.
11 wonderful things for 11 years of illness
If you know me, you know I’m not the kind of girl whose whole life revolves around her man. But my man is just so lovely, he has to go to the top of this list. For over 5 years, he’s been my best friend, my cheerleader, my shoulder to cry on, and the celebrator of my total dorkiness (since he’s a complete dork himself). We’ve been through a lot together, and come out stronger for it.
I’m grateful to us for us. We built this life together and it’s a pretty damned good one.
2. More amazing friends than I know what to do with.
You know who you are. I am so blessed to know so many delightful people who support me and love me.
3. My independence & freedom.
Six years ago, I didn’t believe that I could ever live on my own or support myself financially. Look at me now! I moved across the country & built a home for myself in a place where I knew no one.
4. Prince Edward Island.
Thank you for being my very first home. Thank you for welcoming me with open arms. Thank you for introducing me to some of the loveliest people I know.
5. My art.
Of course. The art that I make is one of the most positive forces in my life.
6. Studio Escalier & France.
My experiences last year were transformational. I still can’t believe that it happened. I still can’t believe that I’m going back in 10 days. I am so grateful and so blessed that this opportunity came into my life.
7. My collectors & supporters (that’s you!).
You are the reason that I make art, that I write and the reason that I got to France. Thank you from the bottom of my heart for all of the support that you’ve given me the past 4 years.
8. The little things.
Because even on days when I feel sick and small and scared, there are still steaming cups of tea, sunshine, cookies, laughter, books, raindrops and pets who will curl up under the blanket with you. I will never stop treasuring the small, sweet moments of life.
9. My family.
They’ve always been a huge source of support for me, even when I start doing things that I couldn’t possibly explain to them. They may not always understand why I do what I do, but they’re always there.
10. I am grateful to my body.
After 5 years of being very, very sick, I began to trust what it told me it needed and since then, we’ve been able to develop a rhythm that works for us and my body has healed itself of so much. I just need to trust it, and it will take care of itself.
11. That still, small voice inside.
I am grateful to myself for listening to that voice. I wouldn’t be where I am today without it. It has been my guiding light back home to myself and out into the world. I don’t know if it’s instinct, intuition, a wiser part of myself or some sort of external force. I just know that when I listen to it, good things happen.
I am still here and I am still dreaming.
I will keep dreaming. I will keep savouring the small things and painting work from my soul. I will go back to France and learn how to make the art that dances in my heart.
I will love and live and laugh, not in spite of being ill, but alongside it.
ME, CFS and Fibromyalgia are devastating illnesses, don’t get me wrong. There needs to be more awareness, more research, more forward movement.
But in the meantime, those of us who deal with this have to learn to live. And that’s what I want to celebrate today – life. The life that flows through us, even when our bodies don’t work as well as they used to.
If you’d like to find out more about ME, CFS & FMS, click here to go to the ME/FM Action Network website.