As most readers of this blog know, I am active online supporting the CMT community, particularly through our CMTAthletes Facebook Group. But what some people might not know is that I also am a site admin for two Ehlers Danlos Syndrome Facebook Groups. On one of these EDS groups, my fellow admin and friend Justine posted a really powerful reply to one of our members. I am pleased Justine has agreed to allow me to share it here too. These words resonate with me. They are applicable no matter what challenge you are facing – be it a chronic condition like CMT or EDS, recovery from a surgery like a knee ACL repair, or managing a cancer diagnosis. Thank you Justine for allowing me to share this.
In Justine’s Words
I admin for two online EDS Communities. A member asked for support recently, with regard to how to keep a positive attitude in the face of life changing complications from chronic conditions, and how to keep doing the things you love. Here are some of my tools.
I have to be honest with myself about what I can do and can’t. And those change daily, so I’m constantly experimenting and retooling my activity. One week I may function almost like a normal body, and the next I am severely affected and am disabled. Being honest about how my body is doing keeps me making well informed choices, and avoiding injury as best I can, while also staying active at things I love. I also say be honest about your feelings. Have a good cry, and then get up and focus on what you CAN do.
2. Can do’s vs can’ts
There are a ton of things I can’t do anymore. If I stay focussed on that I’m miserable, and miserable to be around. Keeping my focus and training on what I can do, and how to modify to keep at it is key for me. Example: my endurance currently blows; so I do multiple short sessions during the day to get the total workout in that I want.
Not just your workout or weekly social events, I mean pace your work load. I was a Licensed Massage Therapist, for 11 years. I specialized in deep tissue manipulation, injury rehabilitation and chronic pain management. I loved it and I was damned good, too. I haven’t worked in over 18 months I still have clients calling to see if I’m back to work yet because they can’t find anybody they like as well. At my peak, I could do 15 to 18 hours per week. As I aged and EDS got bigger, I could only do 8 to 10 a week or I was injured and couldn’t recover between shifts. For the past 3 years, I did 12 to 15 hours of massage a week, plus other work, well over what I knew was good for me, because I was a single parent and had bills to pay. I ran myself into the ground and am now in a rehab/rebuild state myself. If I had respected my body’s limits, and taken it easier in my work load, I am confident I would not have lost my career and identity. Pacing, and working with our bodies can keep us active and healthy.
4. Make friends with your body
There is a lot of “I hate my body” “I hate (insert disease or disorder here)” kind of talk out there. For me, that way of approaching this whole thing is self defeating because I was literally making my own body – myself – my enemy. Viewing my body as an ally, an at times wounded ally, makes it easier to find out how to do what I want, and I feel better about myself in the process.
I know this may seem cliché, but in addition to Mindfulness and other meditation practices, I make a practice of gratitude. I make myself identify all the good stuff in my life that I am thankful for, that I am proud of, that makes me smile or laugh, and I do it at least 15 minutes every day. It makes a huge difference in my mood and my ability to see possibilities for treatment and training.
Justine Case was a Licensed Massage Therapist for over a decade, specializing in pain management and injury rehabilitation, utilizing what she learned in a year long yoga teacher training course to teach her clients body awareness and alignment. She also worked in Physical Therapy for several years teaching rehabilitative exercises. Currently using all of the tools of her profession to rebuild and rehab her own body from complications of Ehlers-Danlos Syndrome, she loves helping herself and others to modify exercises and activities to rehabilitate and stay fit while managing chronic health conditions.
If you have Ehlers Danlos Syndrome and are looking for a positive, proactive group that shares ideas and tips then please feel free to check out Ehlers Danlos Athletes on Facebook. And make sure to read the group description first 😉