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.
No comments:
Post a Comment