That which doesn't kill you makes you stronger.

That which doesn’t kill you makes you stronger. Ha! Stronger than what? Anyone who knows me and has seen me waddle up the two steps at church to get on the podium with the assistance of both arms pushing myself up  using the little half walls as supports  is probably laughing at the prospect of me running a half marathon. Or running at all! I have this waddle walk I do just because it feels better on my hips to waddle than it does to walk. When I imagine myself running I imagine the stay puft marshmallow guy from Ghostbusters waddling slowly through the city putting all weight on one leg or the other. That’s the point at which I am at right now, but over the next nine months I plan to resemble Usain Bolt. J (Shoot for the moon, right)?

Right now I don’t feel physically strong. I feel very loose and fluffy like the stay puft marshmallow man. But I do feel mentally strong and I know that’s what I need to get from marshmallow to Bolt J There’s nothing like your own family members laughing at you when you mention doing anything physical to make you more determined! I feel that my mind is in the right place to achieve my goals. I hope to transfer this mental determination and strength to physical determination and strength over the next few months.

I draw on several sources for my mental strength, but I want to focus on just one today. But as a forewarning I want to explain that I am in no way trying to downplay the severity or devastation of terminal illnesses. I understand the pain of terminal illness as I have had close friends suffer and die from such things. Ehlers-Danlos Syndrome (type III) is not terminal. You have to wake up every day in excrutiating pain, go throughout a normal day of taking kids to school, housework, work-work, volunteering at kids school, playing with kids, preparing meals, changing diapers and all other daily tasks in pain and then you go to bed at night where some might find relief from a hectic day but where those with EDS then experience adrenaline surges and rapid heart rate keeping awake and a full night of restless sleep dislocating every time you turn over in your bed. Then you wake up to do it all again. Don’t mistake this for complaining or me wishing for the sweet relief of death. I am merely trying to explain that there are people out there that suffer every day and must endure long lives taking care of families and themselves. (And I’ll take this little side not opportunity to say that I am grateful my illness is not terminal and grateful that I can still take care of my family and myself).

I say this in hopes that some may gain an understanding of why I am choosing to run this race. I am not a runner. And when I hear of people running marathons I think they are kooky for putting themselves through pain just to run around like crazy people. But every day of my life is controlled by my EDS. Brushing my hair hurts (so I cut it all off J)  Brushing my teeth hurts. Carrying a laundry basket hurts. Holding the steering wheel on my car hurts. In case you haven’t picked up on it yet my problem areas are my hands and my hips. There are many days that I waive my white flag and give in. But it is time to take charge of my own life. To drive my car even though it hurts. To carry my laundry basket even though it hurts. To hold my children when they need me to even though it hurts. In enduring what I must go through to compete in this race I will always have this experience for the rest of my life to draw on. When my accident prone children fall and hurt themselves I will be able to hold them even though it hurts as I remind myself that I ran a marathon even though it hurt, so I can certainly hold my child for a minute or two.

I draw my strength from the many in this world who must endure a lifetime of pain and struggle and do it without complaint and make the best of it. I hope to in turn be a source of strength and inspiration to those who will never find relief in this life.

The hymn “Lord I Would Follow Thee” says, “. . . In the quiet heart is hidden sorrow that the eye can’t see.” EDS has not killed me, though there have been many days that I thought, “How is possible to be in so much pain and still be alive?”. I try to remember that which doesn’t kill you makes you stronger and I remind myself that I am stronger in my own mind and also stronger for others. Strong for those who are quietly suffering in their own bodies and minds.

My mom and I chose to make our journey public so those who are suffering quietly can draw strength from us. I hope we will gain friends through our journey because anyone with EDS knows that we aren’t going to be able to be the strength and support we want to be all the time and may needs some friends to lift us up and keep us going. I know we are not alone in this. Please feel free to follow our blog, comment here or tell us your own story. You can contact us at arizonaeds@cox.net. Or just leave us a comment here! Together we will become stronger in body and mind!

Melissa

I'm Already A Winner!

I'm 58 years old.  I'm the one that gave my daughter. Melissa, the Ehlers Danlos genetic gift.  I have to put my joints back in place each morning when I wake up.  I'm not talking about the snap, crackle and pop most of us experience.  I'm talking about the loud hollow thud a joint makes as it moves back into it's correct position, hitting a few nerve endings on its way there.  Then I begin to do the snap, crackle and pop we are all familiar with.  My physical therapist tells me I will never be able to sneak up on anyone.

Back in the day I used to get up at 5:00a.m. and run/jog.  These days I don't schedule anything before noon because it takes me that long to get my blood pressure up to normal and to the point where I feel like I might be able to accomplish a few little things.  A symptom of EDS is low blood pressure resulting in my cravings each morning for Coke Zero and saltines.  Because I got hooked on the "runner's high" in college, I have always tried to stay active, running/jogging until I reached my 40's when EDS decided to hit me with a full onslaught of some very interesting symptoms.  It took me 5 more years to learn what I really had, until that time I assumed every 40ish women felt as I did.

Aside from the bursts of adrenaline throughout the day that is common with EDS, I have no energy.  I don't mean I have to slow down and rest for a minute, I mean I have to stop this minute and who knows when I will recover.  I was forced to quit my teaching job four years before I could retire with full benefits.  I just could not stand up to the demands of teaching junior high and all that goes with it anymore.

So, it makes little sense when Melissa called me a while back and asked if I would watch her kids while she ran a half marathon in Dublin that I jumped at the chance to run with her.  You see EDS effects only the body and not the mind.  In my mind I still want to run and feel those endorphins course through my veins and imagine I'm back to those days when I could do it so easily.

It's hard to understand how someone in so much pain and so constantly fatigued can even do something like this.  Because chronic pain is the hallmark symptom of EDS we tend to be lumped into all others who experience chronic pain.  We are unique.  Even though our joints hurt, we do not hurt like arthritis patients hurt.  Arthritis patients have inflamed joints, EDS people do not have inflamed joints - they're just loose.  Our pain comes from the tiny miniscule tears to the soft tissue around our joints and from the effort our large muscles endure to keep our joints in their proper places.  Therefore, we feel both acute and chronic pain at the same time.  EDSers feel better while we are moving, it's when we stop moving that all the problems begin.  That's why I can do a three mile run and feel as though I can run for ever especially once the endorphins kick in. 

I have no illusions about finishing this race anywhere near a time that would be considered competitive.  I live my life according to the wisdom of Solomon in Ecclesiastes 9:11. "I returned and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all. (King James Version)

By the time I step on the starting line in Dublin in August I will have ran more miles than I can imagine, pushed myself to impossible physical limits, endured many injuries, cried out of frustration numerous times, hopefully will have lost the few extra pounds that can only come off through vigorous exercise, will have reached my peak fitness level and will have shared this experience with my daughter.  With all this behind me at that point, I will consider myself a winner before I even take that first step.  The marathon will be my reward for doing what it takes to get there.

I Made Other Plans

Welcome!

Welcome readers! We invite you to follow us on our journey.

We are a mom and daughter who both struggle with Ehlers-Danlos Syndrome and have decided to run a half marathon! 

We realize that having this physical disorder will make this a difficult and painful experience. But we hope to be an inspiration to others by committing to this marathon and seeing it through to the finish line no matter how much our bodies dislike it.

Everyday tasks for us can be excrutiating. Getting out of bed, holding a hair brush, gripping the steering wheel. . . We have been given advice by our doctors on how to live a life of moderate pain. But the bottom line is that no matter what precautions we take we still hurt at the end of the day. So if we're going to hurt at the end of the day we're going to make it happen because we did something! And not just every day thing like opening the refrigerator door or writing with a pencil. 

We will be running our race in Dublin, Ireland.

In doing this we hope to conquer our physical bodies. Ehlers-Danlos Syndrome let's us know every minute of every day what it would like us to feel and what it would like to do with our bodies. But we made other plans. We have children, and grandchildren, jobs and lives that require the use of our bodies. So, since we're going to hurt anyway, we're just going to go ahead and live.

Thanks Ehlers-Danlos for letting us know what you want to do with our bodies, but we made other plans. And the plans don't include you controlling our bodies.

Please follow us and help us as we go through this journey. We will seeking advice, encouragement and would love to hear about your own stories and experiences about not letting EDS or other physical limitation control your life.

We look forward to making many new friends through this experience and hope to be an inspiration to many!

Leave us a comment and we hope to stay in touch and build a support group with you all.