I never thought I’d wear Crocs. Before being diagnosed with CRPS I loved shoes, especially boots. I loved boots because I used to ride my horse and my motorcycle. I lived for riding, going fast, splitting the sky with hair blowing around my face. Now, I wear Crocs. I get a rare horseback ride walking slowly while wearing boots three sizes too big. No more motorcycle. No more wind blowing through my hair. Just Crocs.
The Pain is Exhausting
I have a friend who recently dealt with kidney stones and was in tremendous pain. She kept saying to me, “I don’t know how you deal with pain like this every day, and yours is worse.” My answer, “A lot of drugs and my DRG Implant.”
I felt bad for her but was also very grateful that she began to understand what we go through with CRPS. Plus, I was diagnosed with stage two kidney disease (from taking pain medications), so I know a bit about kidney pain. My friend had to take pain medication all day for nearly a month in order to function and spent a lot of time in bed. She was exhausted from the pain and couldn’t understand why. I knew. It takes so much energy for our bodies to cope with the pain that we get worn out.
It takes so much energy for me just to take a shower that I have a hard time functioning afterward. The warm water irritates my CRPS foot. It often feels like the water is stabbing me with every drop. Trying to do other things poorly affects me too, like cleaning the house. When I get inspired to clean, I get completely fried, suffer all night long, and have to take extra medication. I definitely can’t shower and clean in the same day.
My friend having kidney stones reminded me that we go through so much with CRPS. We are tired and that’s okay. We are limited and that’s okay too. We don’t have to feel guilty for not cleaning the house or showering every day. It’s okay. We can do what we can do. We can educate the people around us about how much CRPS affects us. And we can pray they never get kidney stones or have to go through what we are going through.
The CRPS price is high but we still have our minds—for the most part. We can still choose a good attitude, have some humor, and encourage others that pain won’t win. We are some of the strongest people on the planet. We can get through this with a smile and hope that our future can get better. Medical advancements are coming, like the DRG Implant. We will not just survive, but we will thrive and maybe even take more showers.
Do you ever forget your meds? I do, and oh, my goodness, the pain. I don’t have a caregiver to remind me, and my alarms aren’t doing it for me when I’m not feeling well or didn’t get enough sleep the night before. What about you?
Let Go of the Blame
I’ll come straight out and say it: You did nothing to get CRPS. I have found that people want to place blame on us, or we want to blame ourselves for getting CRPS. My CRPS started with a trip down a 3-inch stair that I didn’t see. I twisted my ankle and five-years after needed surgery to repair torn ligaments because it would roll under and I would fall. The pain never ended and only got worse over time. Bottom line, I got CRPS from a sprained ankle.
I blamed myself for getting CRPS for a long time. Why? Because I am a Christian. Now, hear what I’m saying. I will explain. I fell at a Halloween party, which I shouldn’t have gone to in the first place. I don’t celebrate Halloween. I was invited by some of my employees and as their manager I shouldn’t have gone with them. Two strikes: A Halloween party and hanging out with subordinates off hours. Add to that: I was dressed as an angel. Strike three?
We entered the party through a dark maze and at the end of the maze was that small step. We poured out of the maze laughing and I tripped. When I went down, I heard a crack and thought I broke my ankle. Before I got up, I said, “Can someone take me to the nearest ER?” Long story short, they called me a fallen angel for the next month as I hobbled around on crutches. (God has a sense of humor.)
Back to being a Christian. There can be harsh judgment along with religiousness in the mainstream Christian church. Twenty-five years ago, I was one of those judgmental, mainstream Christians. So, I judged myself after I fell. I had put myself in a position of allowing the enemy of God to attack me and he did. I made poor decisions and the consequences led ultimately to this horrific disease.
For years, I carried that blame and shame, not to mention the guilt.
You may not like this next part. Today I see the experience as one that I had to go through in order to become the person I am today. Today I know that CRPS is part of my life story. At that time in my life, I was going through a nasty divorce and I was going to make bad decisions. You may think I’m rationalizing the scenario to fit my beliefs. Maybe I am. But it doesn’t matter. Again, I would not be who I am today without getting CRPS.
So, was it my fault? Did I position myself to fall? Probably. Again, it doesn’t matter to me anymore. I’ve forgiven myself and I’ve let it go. I’ve found compassion for myself. I’ve found love for myself. And compassion and love are the most amazing pain killers.
With love & compassion,
P.S.: Let it go. Forgive yourself and others involved. Find compassion and love no matter how hard it may be. There is hope, I promise you.
You saw who you created me to be before I became me! Before I’d ever seen the light of day, the number of days you planned for me were already recorded in your book.Psalm 139:16, The Passion Translation
Let’s Not Accept that Label
Pain management is critical for living a hopeful life with CRPS. We use and we try various medications and treatments, but the pain is relentless. We have sleepless nights and excruciating days, but we can persevere. There is hope.
My first suggestion is getting a Dorsal Root Ganglion Spinal Cord Stimulator in addition to a Neurontin, and other supportive medications as prescribed by your physician. High-quality CBDs work as well.
Joyful Distractions for Living
All that said, we can fight depression and suicidal thoughts and tendencies with distraction. There are so many ways to distract ourselves from the pain.
A Few Ways to Distract Ourselves:
- Exercise: Move those CRPS limbs and strengthen muscles surrounding the affected area. This will help prevent Atrophy and Dystonia.
- Entertainment: Watch positive movies, TV and videos. Staying positive helps our bodies to recover from the pain. Watching negative (death, violence, etc.) shows stresses our bodies and we can become anxious and depressed.
- People: Friends and families give us relationship and fellowship which we need as human beings. We are made for relationships and community. People can offer us love and care.
- Pets: Having pets gives us joy. We often laugh and play when we have pets which works to heal our bodies, minds and spirits.
- Hobbies: Find one if you don’t have one. Take pictures, write, sing, dance, play… and do it like nobody’s watching. Anything we can do to keep our minds busy can help reduce the pain.
Whatever you do, unleash your creativity. Being creative unquestionably gives life meaning. When we have a reason to live for the living, we are less likely to fall into hopelessness.
P.S.: How do you distract yourself? Please, let me know in the comments.