6. It's still possible to live a meaningful life. My life feels more focused, clear and and meaningful than ever before. That being said, I am able to look back and see how my life has ALWAYS been meaningful, even in the darkest, most difficult times.
I have a large circle of friends, including many who live with varying degrees of health. My sickest friends--the ones who worry the most that their life might not be meaningful or who feel like a burden-- are some of the most reliable, emotionally intelligent, empathetic, kind and compassionate people I know.
In this world, kindness and compassion are more important than almost anything.
7. Research has advanced little in the last 20 years. This makes me sad for myself, for every person I know with these illnesses, and for every person who is newly diagnosed. I recognize that answers for treatment and diagnosis will come after I have lived a life with these illnesses. I stay hopeful that my quality of life will continue to improve, but I rest quietly in the knowledge that research for illnesses that don't have funding goes SLOWLY.
Right now Rowe's Research Runners combines my passions, my story, my quest for meaning and my desire to create change. I like that I'm settling into this new role just as I also mark two decades of living with chronic illness.
I keep my hope alive for future generations of people with these illnesses and I do my work for them (and for Dr. Rowe's legacy, of course).
9. Use mobility devices if it means I can have more freedom and be more engaged in the world around me. This is a hard one for a lot of us. Sometimes I still miss the Rolls a bit because it allowed me to go on longer outings. It gave me freedom and allowed me to leave my house. I still use a seat cane for times when I know standing will be hard.
For people with dysautonomia and/or chronic fatigue syndrome, I would consider using a zero-gravity chair or reclining chair as a type of mobility device. If using one at the movie theater, theaters around town, at services, at a gathering/party means you can go instead of stay home because you can't sit up long enough, use one.
In the same vein, wear compression garments, and wear them with shorts if I want to. If it bothers you, just think how uncomfortable *I* am wearing these suckers!
For people with dysautonomia and/or chronic fatigue syndrome, I would consider using a zero-gravity chair or reclining chair as a type of mobility device. If using one at the movie theater, theaters around town, at services, at a gathering/party means you can go instead of stay home because you can't sit up long enough, use one.
In the same vein, wear compression garments, and wear them with shorts if I want to. If it bothers you, just think how uncomfortable *I* am wearing these suckers!
10. Finding 'people like me' is part of my survival story. I am not sure how I would have endured the last 20 years without the friends I have met from around the world. I spent years on DINET's forum where I got both help for my illness and lasting friendships. I have been friends with some of the women I know for over 16 years now.
Having friends who 'get it' means I can text them just about anything--emotional and physical--and they understand me. Pretty much no topic is off limits or TMI with us.
Blessings,
Emily
Photos: Arboretum, Mother's Day 2018 (May 13th). Viburnum; Apple blossom tree with petals on the ground.
No comments:
Post a Comment