Most people develop expectations about how we think our lives will unfold- careers, family, health, love, friends, etc. We have our own life’s “movie” in our mind’s eye, and subconsciously expect that it will unfold the way we hope. Anyone who has been on this earth for more than two or three decades probably realizes that many if not most of those expectations need to be adjusted along the way. Life has a habit of getting in the way of our plans for ourselves. For many of us, this can take the form of having a different career that we might have envisioned, not having the house we envisioned, or marrying someone who doesn’t match the “profile” we probably consciously or subconsciously had formed in our minds. But for people who contract CRPS, their lives are altered in ways that few of the rest of us can imagine.
For those of us who are caregivers, we will never fully know what it’s like to live in constant pain. We witness our loved one’s pain and all the ways if affects life, but we can’t truly know how it feels to be in their place. What most of you will know is how frustrated, angry and helpless you feel much of the time because there is little you can do for your loved one’s pain. But there are many things that you can do to make life more bearable for someone with CRPS.
If you are familiar with the “Serenity Prayer”, the gist of it is to do your best to control the things you can, roll with the things you can’t and understand the difference. My wife Lee and I have made this our mantra over the years. And it has taken years for us to get to a place where we feel that we are doing a pretty good job of controlling the controllable- routines, plans, the rhythms of our days with each other, searching for humor and opportunities to laugh, getting out of the house when health permits to see friends, family, a movie, have dinner, whatever. Understanding what causes stress and doing our best to manage those issues. Finding and keeping connected with doctors and other caregivers who are puzzle solvers and advocates for their patients. Conducting our ongoing online research for more answers to pieces of the CRPS puzzle and its many ripple effects.
And then there are all the things we can’t control- the times when the pain is debilitating, when she can’t get out of bed much less go and do the things she/we want to do. Times when the spasms from her dystonia lock her back or legs in rictus, or make her speech unintelligible, her swallowing challenged and her breathing labored. Times when the dysautonomia she’s developed results in her passing out soon after eating anything or battling constant overheating from thermal dysregulation. Times every night when she can’t sleep for more than a couple of hours at a time due to the pain, resulting in chronic sleep deprivation and exhaustion. And all of this adds up to a pervasive depression about all that has been forever lost, with the hourly question in her mind about how much longer she can stand to endure all of this.
For yourself, and for the person to whom you provide support and care, find those places of peace that allow you to roll with the punches and stay standing.