Wow, this was a tough one for me.
When we think about our future health as women, we think we may someday need a hysterectomy or maybe an appendectomy. Maybe a long sickness, or God forbid, even cancer. But, after 20 years of nursing I never dreamed I’d get something I’d never even heard of.
I’d always been healthy, eaten right and loved to do all sorts of indoor and especially outdoor activities. I’d never smoked but did enjoy an occasional glass of wine. After being a divorced, single mother also for 20 years, I was newly remarried to a wonderful man. We cycled, skied, hiked and kayaked together. We had even climbed the back of Half Dome in Yosemite together, the second time for me, and I considered it one of the happiest memories in my life. Getting to do it again with the love of my life made the memory even more special.
Growing up with a violent alcoholic father who never allowed me to watch TV without doing chores at the same time, and an enabling, educated but controlling mother who insisted I choose a high-level college educated career, I had a very strong and deeply embedded work ethic. I always gave 110% to anything I did. Certainly, I also expected to work full-time until I retired at 67.
So, when I suddenly had severe pain in my left (dominant) hand, wrist and elbow 3 ½ years ago, I never expected it to become a life-altering change for me. Diagnosed with severe carpal tunnel and a pinched nerve in my elbow and scheduled quickly for surgery for both, I was told I could expect to return to work in 4-6 weeks. I even requested to have both my wrists done at the same time rather than one right after the other as was recommended, thinking I’d be back to work even sooner. The problem, however, was although the pain had changed, it had significantly worsened and has never gone away. My sympathetic (fight or flight) nervous system was now on overdrive, reprogramming my brain with permanent pain messages I have had to learn to live with.
Finally diagnosed with Complex Regional Pain Syndrome in both my arms, I felt as though I was being electrocuted or had been set on fire. It was agony. After multiple failed treatments and therapies, I was left thoroughly discouraged, frustrated and cycling through all of Elisabeth Kubler-Ross, MD’s Stages of Grief. Thank God my daughter was grown, and my husband completely supportive throughout the whole process.
Reflecting back on these last few years I have had to pull once again on the inner strength I’ve always been able to draw from. It got me through 5 very difficult years in the Navy, a miserable divorce and all the years juggling everything as a single mom. But, often now, that well was dry. I shed many tears, had (and still do) many sleepless nights, but little by little I have learned how to cope better with the pain.
First of all, I got online and started hunting for resources. I researched everything I could think of that pertained to my condition, learned as much as I could about my medications, my therapies and searched for support groups either locally or online. I found out about the American Chronic Pain Association which has been a Godsend for me. I joined my local chapter which meets twice a month and met wonderful people who also knew firsthand about chronic pain. Furthermore, the ACPA has a wealth of the same wonderful information that I worked so hard to compile on my own. We share ideas and get a new perspective on problems we each encounter while navigating through our “new normal”.
I also researched and now practice guided imagery, meditation, and modified yoga. Likewise, I have begun behavior modification which teaches you how to train your brain to lower your pain level. My psychologist is training me to think of me, the pain sufferer separate and apart from me, the healthy mind; that my pain is a separate entity that I can observe but not necessarily suffer with. All of these are processes requiring practice and commitment. There is no quick fix or magic cure. There are good days and bad, yet I still seem to have to learn over and over not to overdo when I feel a little more energy. The consequences in extra pain and fatigue feel like a ton of bricks falling on me. God, you’d think I’d learn that lesson only once!
Additionally, I have had to have counseling to help me deal with the tremendous guilt I feel for no longer working. When I talk to my nursing friends or think about the pace I used to keep, I simply don’t know how I ever did it. I certainly do miss coaching a woman through labor and delivery, teaching her how to breastfeed, or the discharge teaching I loved so much. But, unfortunately, the vast majority of a nurse’s day is complying with managements’ grossly unreasonable expectations, reprioritizing and putting out constant fires all day long while caring for so many patients you feel like you can’t give good care to any of them.
Now, with CRPS, I must pace myself with anything that involves using my hands, and require lots of help from my husband for even basic household chores. I can’t always trust my grip and my pain is much, much worse if I overdo beyond basics. To help with daily activities, I have perused medical supply catalogues for useful items such as a blow-dryer holder, a jar opener, extra big handles for silverware and even several layers of sheepskin for my car’s steering wheel. I also have a special pillow that holds a book for reading.
I’ve got to say though that I had to find new ways to be able to exercise. This was my peace of mind and my sanity keeper although I’m sure my husband would say that is debatable! We now ride a tandem bicycle together. This has been the most wonderful solution for us because we can do it together and I don’t use my arms or hands for anything except signaling turns. He designed arm rests for me and I just pedal, read our route to him, pedal, warn about cars or approaching dogs, and pedal! I get to look around and don’t have to worry about steering, shifting or even braking. I get to see the squirrels, the wild turkeys, the creeks, the beautiful trees and flowers and just marvel at the beauty around us. What a deal!
I’ve also come to terms with being home. I get to be a wife, cook easy to prepare meals, and be home when my husband gets home from work. I love this. Yet I find I need more than this; when I give of myself to another, my life has more meaning and purpose. This is the reward that I felt from nursing. I have just had to find a way to give in this new life of mine. I’ve always felt that I would do almost anything for a disabled person, a veteran, a senior or an animal. Now I just look for new and creative ways to be of help. It’s actually kind of fun and every day I try to find some little way to make a difference.
If reading my story has given even 1 person some idea or hope for their future than it was well worth the pain it cost to write it!