By Ellen Lenox Smith

Lately, I feel like we are all living in the twilight zone. These changes to our daily lives are major and, at times, confusing and overwhelming to cope with. Those of us living with chronic, painful medical conditions are already living a life that is complicated and on the edge. For me, living with Ehlers-Danlos syndrome (EDS), a simple tight hug or slip and fall can actually become deadly. So, each day is already a challenge and I must constantly remain vigilant to remain safe.

Many of us are already learning how to live with these uncertainties and complications, so we turn to the tools we have developed to stay as safe and healthy as possible. My physical therapist, who specializes in patients with debilitating EDS, has noticed recently that we seem to be presenting calmer than others about the COVID-19 virus. She doesn’t mean we don’t care and aren’t scared, but instead, that we have already had to live on the edge and seem to see this as just one more challenge to add to our daily list.

That does describe me… until I think about important life-line appointments that help me to have the best quality of life I am able to. As calls keep coming in of appointments that are getting canceled, I am handling it pretty well–except for the prospect of my manual physical therapy getting shut down.

Manual physical therapy is the biggest life-line I have. My bones shift out of position, including the neck, sternum, hyoid, and trachea. When these are put back into position, I am safe. When they are subluxated or dislocated, my breathing is compromised and my oxygen levels drop. So, I will not deny the concern I feel. If I allow myself to think about those PT appointments needing to be canceled, I am very concerned about how to stay safe and alive. I work so hard daily to have a better quality of life. Losing the most important help I receive is truly frightening and a challenge emotionally.

Even though I’m afraid, I know I have to try to remain calm and focus on what I am grateful for and, unfortunately, plan ahead on how to live my more complicated life with the prospect that some, if not all, of my appointments, may be canceled.

I am not sure what I can do except picking my specialists’ brains on any education they can give my husband in attempting to help me at home if needed. And then the rest is out of my hands.

These are scary times, but we are pain warriors and need to remember to hold on to the strengths we have developed. Let’s take this on and hope for a return to normalcy as soon as possible.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 

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