by Toni R. Marshall
May 12, 2014
I am grateful to know of Florence Nightingale (1820-1910) being bedridden and suffering a chronic illness for 20 years of her life through Awareness Day thanks to Tom Hennessey, Jr, (1954-2013) who established it through his own ME advocacy group, RESCIND.
I think of Nightingale suffering similarly to me for 20 years in her time often. She was isolated though living with family. There were no telephones, no Internet, no Facebook, no Twitter, only paper and pens for writing letters, the postal service, newspapers. At least she had paper and pen and family. But families can be thorny relationships, especially when chronically ill.
While I'm grateful for Nightingale's birthday as a set point to consider our similar conditions to Nightingale's, bringing awareness to others as often advocated by support groups feels like too much work for me.
Maybe those who are new to these conditions or those living with partners, spouses or other care-givers feel moved to write to members of Congress, the president and various government health agencies asking for attention, for a cure, for help.
I find such efforts are overwhelming.
Efforts to let people know we who suffer these fairly invisible conditions are here and needy of resources are way too much for me to consider even though I now feel better more of the time than when first diagnosed in 1997.
I am finally able to appreciate I am too disabled to do much else but pay attention to and care for myself.
When I was first diagnosed and for several years afterwards, I felt pulled to DO something, had the drive to lobby and write a few letters, attending meetings and giving testimony to the federal CFS Advisory Committee, even appearing on a local Fox television news show talking about my illness, my losses, crying about "losing" "family and friends."
I didn't handle those outings at all well. I complained to organizers about other lobbying patients' behaviors. I did not express myself well to those I lobbied. My efforts made me much sicker for weeks or months afterwards as well as on the days I traveled to be there sitting up and moving around far too much for someone with severe Orthostatic Intolerance (which is a form of Dysautonomia underlying many cases of CFS and FM).
Awareness efforts seem to have benefited me the most. All those outward awareness and lobbying efforts going so badly, wearing me out so consistently, taught me to stay home. Paying attention to my body, my own self-care and then discovering gratitude practice for what is going well in my life interrupted the cycle of overdoing which is so detrimental to my body. With gratitude practice, I am calmer, more attune to what I have even with my limitations.
I’m fortunate and grateful to have help around the house. Help eventually arrived through a rehabilitation center who wrote to Developmental Disabilities Agency of the Federal Department of Health and Human Services agency (DHHS) on my behalf. Several years later, in-person help arrived after I was placed in "emergency" status with a local helping agency.
It is more than enough to have to discuss my disabilities with those coordinators and aides who help me in my home.
My family, for the most part, is very busy. They find my disabling conditions overwhelming and painful to witness. Several family members suffer similarly as I did at their younger ages. Fear of becoming disabled like me makes it especially painful for family as I arrive horribly sick from my effort to get to, or, having had a car accident on the way to, a family event.
Awareness of our conditions in all of their intricacies and layers of contributing behaviors is most important for healing. I learned from knowledgeable support group members about my conditions and how symptoms are related and overlap which was a college class-worthy education. Then it took years to incorporate what I had learned into living with my conditions. I'm still incorporating what I have learned many years later.
Doctors usually have not experienced such symptoms and don't have time nor enough intimate knowledge of living with such symptoms to discuss how our conditions and activities affect our bodies. We are teaching our doctors by discussing, as best we can, in intimate detail, how we live with these conditions. Every helping practitioner's appointment is an awareness opportunity for both the practitioner and me.
I find it an enormous amount of work to pay attention to how my body is doing on the supplements, foods, medication I take in. It's a lot of work to notice how my body is handling support group teleconferences and trips to the doc or shopping. I never realized, for instance, until I was so disabled, how many separate tasks are involved in "shopping." Groceries sit in my car or just inside my front door until I am able to put them away, usually the next day. This happens even after using a store's handicapped scooter. To notice how I am, how my body is doing is worth the effort when I am able to do it.
Awareness of, paying attention to myself and how I am, how I behave in as many situations as I can handle may seem self-conscious, self-centered, self-obsessive. Perhaps it is more that I am overcoming self-neglect with self-love and self-acceptance.
I am grateful for the enormous amount of awareness of myself and my body I have learned, am learning, since accepting how truly disabled I am. I am grateful to realize how my disability means doing anything causes symptoms in the moment or in a day or two which lasts days, weeks, months.
I no longer enjoy the luxury of spending energy on protesting or pointing out what is lacking in the world. Nor do I continue to ask that anyone else make their conditions worse by fighting on my behalf.
Becoming aware of and adjusting my life for my disabilities is more than enough for me to do. Becoming aware of all for which there is to be grateful is more than enough for me to do. Writing and talking from my recliner on a laptop and phone about these things for and with those suffering similarly which helps me become more aware is more than enough for me to do. These are the efforts that are worth it for me today in my new awareness.
Updated May 12, 2014
This essay evolved from its first edition
CFSupport on May 12, 2011
Fibromyalgia Awareness Day Guest Post to the ICI (Invisible Chronic Illness) Experience on May 13, 2011.
Read more about Toni.