Some caregivers support “clients” or “patients” professionally. At times, they may become friends. Other caregivers support “loved ones”- spouse, child, close friend, parent, etc. In my case, I support my wife Lee. Sometimes, it is too easy to find myself falling into the trap of feeling helpless or angry that I cannot do anything to reduce her pain from CRPS and the other conditions with which she lives. Most of the time, however, I am motivated by her courage, love and persistence to get better, and to help others suffering from the same condition. Every day, I see her doing research on CRPS, Fibromyalgia, Chronic Fatigue Syndrome, Dystonia, Dysautonomia, systemic inflammation, and I follow her lead, looking for solutions online for some period of time virtually every day. With her as my example, I have adopted a “leave no stone unturned” philosophy over the years, not only to find answers for Lee, but to be able to pass them on here (see our Research tab on this site) and to share them with the members of the CRPS Seattle Support Group which we started in December 2018.
Every day, I watch Lee fight for her life, to preserve some “normal” quality of life. She reaches out to friends and loved ones, communicates with other CRPS patients online, or sends me suggestions for content for this site or our next Support Group meeting. But she also looks for a movie we might enjoy seeing, or a day trip we could take to get us outside and doing something fun. She pushes me to take better care of myself, physically and mentally. We are a team, both searching for ways to have balance in our life together, to find laughter, see people we love, try a new dish for dinner, or just spend time together with as little interference from pain as possible.
To live with CRPS successfully takes a marathoner’s mentality. It is a long, tough, tiring process with a lot of obstacles to overcome. It takes a “never give up” attitude, and Lee has that to the nth degree. I am awed by her determination to get better, and, beyond that, help others benefit from the knowledge we have acquired through years of trial and error, research and persistence. As we mention in this site, we see it as an exercise in finding the right pieces to the solving the CRPS Puzzle. With Lee leading the way, we have discovered various pieces over the years- the friends and family who don’t disappear after years of having to cancel dinner dates, change travel plans, or miss family gatherings. The right doctors who understand the intricacies and challenges of Lee’s conditions and are willing to help us keep looking for solutions. The person who keeps tweaking customized shoes and inserts to help Lee walk with greater comfort, and the massage therapist who helps loosen her spasmed muscles enough to avoid being bedridden. And on and on. These numerous puzzle pieces are big and small, and they are all important in the effort to stitch together a life when you’re suffering with CRPS or any type of debilitating chronic pain.
My wife Lee is my hero. Despite having to constantly battle her pain, she finds a way to lift me up with her tireless pursuit of life, even when she is bedridden. She never gives up no matter what new challenge befalls her. She may get down, but she always finds a way to come back. As a caregiver, it is crucial to remember that you can make the life of the person for whom you care better, maybe not by directly reducing their pain, but by letting them know you are there to help in whatever way you can. I cannot think of a more important thing that I can do with the rest of my life than find ways to improve Lee’s life, doing research, finding joy in little things together, cooking something she likes, and most of all by loving her, and letting her know I will always be here trying to keep up with her. We are on this journey together, and I learn how to live my life better by watching her.