The 1st and ONLY digital wellness magazine for living well with Ehlers-Danlos syndrome (EDS), other hypermobility syndromes, and related conditions.
Strength/Flexibility/Health/EDS (SFHEDS) – having (or finding) strength, flexibility and health while living with EDS.
The name Strength/Flexibility/Health/EDS (or SFHEDS for short) was derived from my desire for an outlet for my health & fitness passion, as well as for a way to connect with other active people with EDS and I did not want to do so through my personal social media accounts. I wanted to share more uplifting pictures than the typical Ehlers-Danlos Syndrome images, ones that depict how being too “flexible” can be turned into something strong and healthy and I needed a name that gave-off a feeling similar to the persona that I wanted to demonstrate. Through my pictures & posts, l wanted people to feel… Positive. Happy. Fun. Motivated. Strong. Living life. Moving forward. Flexible vs. Hypermobile. Healthy, Despite living with EDS and I want to help the EDS Community in any way I can.
Strength/Flexibility/Health/EDS is about my life… the ups, the downs & the complete derails. It’s about my journey as a wife, mom, small business owner, entrepreneur, dog mama to 2 Alaskan Klee Kai pups, photography fanatic, closet IT/Tech geek, researcher, reader, positive thinker, traveler, wanna be fashionista, Ehlers-Danlos National Foundation volunteer, health/life coach and passionate about all things health & fitness related, while living with Ehlers-Danlos Syndrome, as well as the whole shebang of other comorbid conditions.
Fitness, health and nutrition have been passions of mine since I was child and exercise has been my main way of “treating” Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, chronic pain, hypothyroidism, and all other chronic “es” and “omes” I have for years. My choice to focus on exercise, nutrition and taking the least amount of medications as possible, has certainly not been the popular way to deal EDS, until more recently and goes against the norm for sure. But it works for me and it has worked for years. Consistent, proper and safe exercise is the reason why I have done as well as I have, considering all issues, symptoms and diagnosis my genetic make-up decided to throw my way, in addition to Ehlers-Danlos. My approach to life with EDS has been validated over and over by each physician I’ve seen, including known EDS specialists.
My whole goal always been to just keep moving, literally, through life’s ups and downs, so the rule that I set for myself has always been “just 5 minutes.”
“Just 5 minutes” first started as my own “rule” when I didn’t want to workout (or clean the house); however, it has become a “rule” that other people identify with and is also one that helps provide the motivation needed to start moving.
The rule is this:
– Move your body in some way for 5 minutes
– You can go all out or as slow as you want. Move one arm only, one leg only, another body part only or all of them, but just move and do it for 5 minutes.
– After 5 minutes, if you want to stop, then stop. Or, just keep moving for however long you decide and at whatever intensity.
– I’ve NEVER stopped after 5 minutes, not even once, I’ve always felt better and the “Just 5 minutes” rule has never failed to get me to move.
My focus is on the positive and not the negative, I stear clear of drama and strive to turn struggle into prosperity, because things could always be worse. And at the end of the day, I just want to be happy, remain healthy & strong enough to move through life with ease, help others find hope & belief, play with my kids, get some sleep, as well as to find the time and energy to take a shower & pee alone. Yes, I said “pee alone.”
Strength/Flexibility/Health/EDS (SFHEDS) is a website and blog about life as an entrepreneur, author, health educator, health/wellness/life coach, medical device sales business owner, health blogger, medical writer, wife, mom of three, EDNF Helpline Volunteer, positive thinker, photography lover, traveler and all things fitness and health related, all while living with Ehlers-Danlos Syndrome (EDS). Exercise has been the largest regular part of my lifestyle since I was 11yo and nutrition has always been a close second. I began with Buns of Steel videos in my living room, because I wanted to feel healthy, strong and I was hell-bent to change my DNA. I grew-up thinking that as we age, everyone became overweight and cut their hair super short. I was taught to believe that it was perfectly normal to try to sneak a handicap parking pass, just so you did not have to walk far in a parking lot. Being older also meant that you were always tired and needed to lay in bed most of the day, had terrible chronic pain, and multiple other health issues. What I realize now, was that I was actually seeing, watching and learning what happens when you have undiagnosed Ehlers-Danlos Syndrome. When someone has undiagnosed EDS, they do not know to take care of themselves as best as possible or believe that it’s critical to living well. And they certainly do not think to move more, or exercise when in constant pain. And then one day… I realized that path, that destiny I thought was out of my control, was really very much in my control. Just because though those around me decided to allow their lives and bodies to end-up one way , I could decide otherwise. That day was the very first time I could actually see a different version of my “older” self. I made a promise to myself (actually wrote them down) to make taking care of my body my number one priority. I wrote down things like: – “I will take-out my own trash.” – “I will clean my own house” – “I will mow my own lawn.” – “I will exercise regularly.” – “I will take care of myself so I have enough energy to take care of my children.” – “I will not wake my kids up by vacuuming in their room because I am angry.” – “I will not lay in bed and watch TV all day long.” – “I will cook dinner for my children.” – “I will eat healthy food.” Even though I was very young, I knew that I had to have a way to hold myself accountable and read these promises in order to serve as a constant reminder to myself every day. The truth is …. I’ve battled debilitating chronic fatigue (due to Chronic Fatigue Syndrome), horrible GI issues, am legally blind in my left eye due to amblyopia (lazy-eye syndrome), constant chronic pain due to EDS, as well as a variety of other related issues since I was a very young. All are not the greatest combo when you are trying to “Move your DNA.” I was and still am so much like my mom and Gram and I knew that it would take changing my lifestyle, making a life-long commitment to myself and sticking to it until I die, to change my DNA. I committed that day and I’ve never looked back. Staying motivated isn’t easy. I’ve had my fair share of EDS Spirals, but exercise, nutrition and other self-care techniques have always been the core of how I have climbed back out, and it has worked every time. Remaining active consistently since I was a kid and taking care of myself through good nutrition, as well as other alternative therapies, are the reasons why I’ve done as well as I have. Considering all issues related to EDS and its comorbid conditions, I’m certainly not free of issues, pain or complications, but your approach both physically and mentally is critical. Proper exercise and good nutrition are two of the best “medicines” that are often prescribed for EDS. Similarly, a healthy lifestyle including food, exercise and stress relief have been found to help so many with other chronic conditions. The reason is because exercise and good nutrition are what we CAN control and what we CAN do to help ourselves, not what we can’t. It’s well-known now that when you have EDS, your muscles have to do what your tissues cannot. What this means is that your muscles must be 2x a strong, in order to help keep your joints and your entire body stable. I used to argue with some people in my family when they would give me a hard time for working out every day, calling it an obsession or for vanity. I would respond, “exercise is not a luxury for me, it’s a necessity.” Dare anyone try to argue with me on that topic — thank goodness my husband learned early. Exercise has always been a non-negotiable for me, even way before I knew I had EDS. I may not have known I had EDS as a kid, but I figured out how to change my DNA as I aged. I also figured out how crucial exercise is to helping me battle chronic fatigue, chronic pain and how much stronger and less “clumsy” I was. Did I really change the DNA I was born with? In some ways, yes and other ways, no. Lifestyle factors, trauma and our environments contribute to the expression of our genes. This process is called epigenetics. I still have EDS and the whole shebang, but I have for sure changed the expression of at least a few of the genes in my body through living a healthy lifestyle, and it has helped my mental state immensely. People often ask me how I keep motivated. I keep motivated by following the Just 5 Minutes Rule. This a rule I made for myself because I’m always “self-coaching,” in order to battle against the “I don’t want to,” or the “I’m too tired.” Both are constantly playing and replaying in my head. I have all these little head games I play with myself. Most of the time, I’m very tired or in s0 much pain, that showering just feels like running a marathon. So, focusing on something small and tangible doesn’t quite feel like an enormous uphill battle. The “Just 5 Minutes” Rule: If I do not want to workout, feel way too tired, have too much to do and/or am in too much pain, I push myself to move in some way. Movement can be super slow if needed, even if it means that I’m only moving one part of my my body for “Just 5 Minutes.” Who can’t do that right? If I want to stop after 5 minutes, I can. However, I have never, not once, stopped. The #Just5Minutes rule has never failed to motivate me when needed and I’ve always felt so much better afterwards. And … I’ve always moved for longer than only 5 minutes. The Just 5 Minutes Rule: – Move your body in some way for 5 minutes – You can go all out or as slow as you want. Move one arm only, one leg only, another body part only or all of them, but just move and do it for 5 minutes. – After 5 minutes, if you want to stop, then stop. Or, just keep moving for however long you decide and at whatever intensity. – I’ve NEVER stopped after 5 minutes, not even once, I’ve always f
elt better and the “Just 5 minutes” rule has never failed to get me to move. My whole goal always has been to keep moving, literally, through life’s ups and downs. Just 5 Minutes first started as my own rule when I didn’t want to workout (or clean the house). However, it has become a “rule” that other people identify with and is one that helps provide the motivation needed to start moving. I focus on the positive, not the negative. I stear clear of drama and strive to turn struggle into prosperity, because things could always be worse. Our journeys while living with EDS never really end — they are dynamic, build upon themselves and even rebuild when needed. And at the end of the day, I just want to be happy, remain healthy & strong enough to move through life with ease, help others find hope & belief, play with my kids, get some sleep, as well as to find the time and energy to take a shower & pee alone. Yes, I said “pee alone.” Other places to follow & read: – Facebook: https://www.facebook.com/KendraNMyles – Twitter: @SFHEDS – Pinterest: http://www.pinterest.com/EDSPatientSol/ – Instagram: @SFHEDS – Tumblr: ActvFaith3/StrengthFlexibilityHealthEDS – YouTube:SFHEDS YouTube Channel Additional projects & affiliations:
- EDS Wellness
- Co-Author of the debut anthology in the Our Stories of Strength series – Our Stories of Strength – Living with EDS. (Click here to like our Facebook book fan page!) – Our Stories of Strength website – FB: Our Stories of Strength on Facebook – Twitter: @strengthstories
- Wellapalooza Integrative Health Conferences
- Moving Naturally with Hypermobility Seminars
If you have business questions, event-related questions, or if you are interested life & wellness coaching, speaking, conferences, seminars, webinars & more, please email: Kendra@edswellness.co
Donations to a particular project, or to help contribute to site maintenance and the writing of content, are more than appreciated. While I’m not a non-profit, I work for myself and building small businesses from scratch takes countless of extra hours and money. I’ve devoted years to helping and supporting the EDS community, which was all done in addition to working my other business and taking care of my family. I opted to not go on social security disability years ago, because I felt as though there was much more I could offer and something I could do, that would allow me to take care of myself and my family. Working for myself has allowed me that freedom; however, this past year, I faced losing my largest customer for main business, while in the midst of working on Our Stories of Strength – Living with Ehlers-Danlos Syndrome. I was also getting read to re-launch EDS Wellness. I am moving forward with even more drive and passion than before, but I have realized that I have find ways to earn back some, if not all, of the money that I’ve invested in the last 5 years just to get to this point. My ultimate goal is a fully integrative medical and wellness facility. Some tasks in front of me that I hope will help support my broader business plan, are applying for grants, including one from Global Genes, as well as beginning a Kickstarter.