By Rebecca May, Guest Columnist
Being a mom suffering with a chronic pain disorder is not for the faint of heart. We need our own superhero: Super Sufferer. Able to clean up pain in a single bound!
The name might need some work. I honestly am my own cheerleader, although I am a shadow of my former bad-ass self. But they say what doesn’t kill you makes you stronger.
I was lucky in the beginning, ten years ago. The pain started in my right arm. I could still run and dance. Whoop it up and cause some harmless trouble.
Now, I fantasize about the thread count in my Egyptian cotton sheets. Netflix is my bestie, and I have been known to shake my pill bottles in the middle of the night just to make sure they are still there.
The fear of withdrawal is intense. They say I am not addicted to the morphine, merely dependent. Well then, that should make me feel better, right? I am afraid that if people find out I need scary drugs to survive, they will think I am a fraud.
What I have found is that these are my issues. Most people I share this personal information with have stories of their own. In fact, I end up knowing too much about their affected loved ones.
As chronic pain sufferers, we want to be understood. Doesn’t everyone? We will seek approval anywhere. If I catch the glance of a kind grocery clerk, they instantly become my new BFF. I have the routine and story down, including the long pauses for appropriate reactions. I turn to strangers because I don’t want to burden my family, especially my teenage kids.
I think all of us Super Sufferers have found ourselves in desperate situations. Like the 3:00 am online conversations with support group friends who also can’t sleep because of the never-ending pain.
Yet, after all the frustration, pain, and isolation, we are still here. It’s difficult to get any accurate number of suicides related to chronic pain, as many are from drug overdoses. People who seek me out either through articles or support groups are looking for someone who understands. Isolation and fear drive people to choose permanent choices.
Now that I am approaching mid-life as a chronic pain sufferer, I have to make some very difficult choices.
Do I continue to work?
The answer for me is as long as I am able. I tried staying at home. I watched Netflix until my eyes were sore. I gained weight and developed depression. I missed adult time and fresh air. After my permanent diagnosis, I thought the party was over. The truth is I just have to modify it. I installed hand bars, bought a cool cane and now I take my time.
What about exercise?
To be honest, I am not able to swing my arms and kick my knees to my chin anymore while African dancing. I can swim and do light cardio. I took up walking around the track with a friend. She knows that I may need to slow down.
What do I do for fun now?
There are people who are going to think you are faking -- that is all of them. They are not your problem. I still do most of the things I did before, with the exception of dancing and running. I love going to the movies, swimming, museums, and grabbing coffee with friends.
Set your own pace. It is okay to cancel plans. Just remind your friends that today it isn’t the best day for you.
Rebbeca May suffers from Kienbock's disease, Complex Regional Pain Syndrome, adrenal fatigue, fibromyalgia, sleep apnea, and reproductive issues. She lives in the Pacific Northwest with her family.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.