A message for my friends with chronic illnesses:
Yet another thing stolen from me by dermatomyositis...my bicycle.
My daughter has outgrown her bike and we don't have the money to buy her a new one, so since I haven't been well enough to ride mine we got it out tonight to see if she could manage it. It's one size bigger than we would have chosen for her, so a little big, but she can ride it well enough as long as she is careful getting on and off - she looks tiny!
I tried to ride it up and down the street to be sure and I am clearly much too weak, I was out of breath by the time I'd gone one house away, and my legs couldn't pedal me back, that one house of a distance. I'm really glad it works for her, but I have to face the fact that it hurts to continually be losing so much to this disease, even with IVIG treatments my body is just failing. I have an appointment coming up to try a new treatment and hope it works as it is my last hope before going on the very dangerous chemo drugs that could have devastating side effects, drugs that I may not even be allowed to take due to chronic leukopenia (low white blood cell counts). I have to admit that I am tired and sad. It's a long, lonely road with chronic illness. The financial ruin is overwhelming. The emotional toll can be unrelenting. The loss of friends is a cruel trick as well-meaning or not, their lives move on without you. If you know me personally, or have read my book, "The Marvelous Transformation: Living Well with Autoimmune Disease" you know it takes a lot to get me down. This current flare, which even with IVIG treatments has lasted more than 10 months has done it. I know I'll find myself again. I want to get back to the "real" me! I know I will once again rise from the ashes...but right now I feel defeated. I cried tears of regret and anger over my circumstance as my daughter whooped in joy riding my (now our) bike. They were mixed with tears of gratitude that she could indeed ride it, and not miss a summer with a bike. Then I felt guilt and anger at myself for feeling that way about her moment of joy!
I have heard from so many people lately that they are struggling with the emotional side of their chronic disease. So
I guess, I'm sharing this very dismal, intimate moment, because I want my readers to know that you are not alone. Even I, the lady who wrote the book about being happy in spite of disease, can feel like shit and get overwhelmed. I don't always have to be the perfectionist; especially in my sickness, I can be human, get mad and scared, go through the stages of grief again as I discussed in the book. I need to let go of the feeling that if I get upset about being sick I have somehow failed to be perfect all over again.
Sound familiar? I want us both, you and me, my friend, to know and remember that we are entitled to our feelings. We have the right to process our anger and sadness about being sick and all the ramifications. And I hope we can both remember that life is full of dichotomy...with every dark day, there must be a light day coming.
Sometimes you just need to vent and get it out. So don't be afraid to do so in the comments if you feel inclined.
I send gentle hugs of healing light across the world to my friends with chronic illness, and remind us all, #chronicillness doesn't have to lead to chronic unhappiness, we can find our way back to #chronichappiness! Let's reimagine our #marveloustransformation!
Emily A. Filmore is the author of the With My Child series of children's books about family bonding. Withmychildseries.com. She is the co-author of Conversations with God for Parents with Neale Donald Walsch and Laurie Lankins Farley. (Rainbow Ridge, 2015). And the author of The Marvelous Transformation: Living Well with Autoimmune Disease about her experiences with chronic illness. (Central Recovery Press 2015).