The Five – Summary of post by Beating Limitations

A year ago a Pandora’s box opened-up to a world that I had no idea existed – a huge EDS Community online, on various social media platforms and each group (on whatever platform they were on), was a bit different.  I first joined Instagram and found many other active EDSers, but then I had to branch-out to recruit for the 1st Annual EDS Ride for A Cause at Zengo Cycle last May 2014.  I joined Facebook through the name SFHEDS, Twitter, Tumblr and even Pinterest and began recruiting like a mad woman. The 1st Annual EDS Ride for a Cause was a success; however, now that I was in this “new” world of social media, I would see posts here and there on Facebook and other places, even though I was most active on my Instagram account.

I was reading through a post in one EDS Facebook group on exercise, when someone mentioned the Facebook group Ehlers-Danlos Athletes.  That was it…. I had found my people! 

 Refreshing. Exciting. Motivating. Uplifting…..

Joining Ehlers-Danlos Athletes was and still is awesome.  Soon after I joined, I was asked by Laura (EDS Athletes group founder) and Donna to help admin the group.  Not much later, Justine joined us and we are going on a year of our fantastic Unicorn Pooping Rainbow (inside joke) foursome.

One of the many questions that comes-up a lot from new members is, “How do you stay motivated and to keep going when things can be so damn hard?”  As usual, we all responded along with other people in our group, but Justine’s comments were particularly impactful.  And as a result, Donna compiled Justine’s comments for a post on her blog, Beating Limitations.  Below are Justine’s 5 recommendations for finding your mojo, in the midst of what feels like the largest uphill battle of your life, as summarized by Donna on her blog post, The Five. 

1. Honesty

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.

3. Pacing

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.

5. Gratitude

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.

Donna, writer for Beating Limitations, is a paratriathlete, who was born in Washington, DC; raised in Hawaii and now lives in London.  She writes about her life living with CMT (Charcot Marie Tooth Disease), Ehlers-Danlos Syndrome and is passionate about beating limitations.   

If you have Ehlers-Danlos Syndrome and are interested in positive thinking and uplifting online group, you can check-out Ehlers-Danlos Athletes on Facebook.

To read Donna’s full post, “The Five” on her blog, Beating Limitations, please go HERE.