Wednesday, October 17, 2012

EDS has a mind of its own

 EDS sometimes gets the best of you!

I finished my 5th Half Marathon yesterday.  I feel worse than ANY race I completed this year.  That list includes 4 other half marathons,  a half ironman, a full ironman aquabike, and countless others races. What makes this one different? Well.. Ehlers Danlos Syndrome has a mind of its own!

EDS sucks.  I've said it before but I don’t really dwell on it because I can’t do anything about it.  The most I can do is give my best efforts.  I’m not sure many people actually understand what it’s like to be held hostage by an invisible illness.  We see lots of stories of courage for fighting horrible circumstances and defeating cancer.  We all love to hear these stories and watch the athletes succeed! And we can sort of relate because we can ‘see’ what they went through. I cry at the Kona stories every time!  Those of us with the ‘invisible’ illnesses just appear weak, out of shape, or just ‘ hypochondriacs.’ 

I know all of you that read by blog, support my story. This is really for me and for my EDS readers! They need to hear this and know they aren't alone.  I do have a small group of EDS athletes that I can look to for support.  I haven’t been able to connect with a bigger group, because many either have been told they DON’T have EDS because they are active, or just haven’t sought out support online.  I do have a group, join us if you like: 

I want the athletes of EDS to have a voice, and to not feel shunned.  I personally feel a bit shunned from the community because I can do so much, and I also feel like an outsider in my athletic community because I’m so damn slow. Sometimes the EDS just sucks the life out of me.  I’m stuck between two worlds!  But I’m a fighter.. so here I am!

I had a great season, no dramatic problems, just annoyances.  But this week I am HURTING!  I completed the Newport Half Marathon on Sunday.  I started the race with the intention of walking!  Well the gun went off and I jogged and FELT GREAT! So I kept up that jog for the first 7 miles!  I jog/walk when I do a ‘run.’  I am really lucky to hit a 15 min mile with my ‘run.’    Now I excel at biking and swimming because I can keep a forced alignment in my body.  Running is a completely different ballgame. I have to think about each step, make sure that I’m in alignment, and hope for the best.  Chi Running makes a huge difference, but unfortunately it’s not 100% for me. 

My arch usually collapses part way through a run/ ANY RUN.  I’m used to it.  Except on this race, both collapsed and it felt like someone had a flaming hot poker and was jamming it into my foot with every step!  I know I’m not normal; I am usually in pain 90% of the time, but this was a bit over the top.  That comes with EDS, and I've learned to just manage.  Some days it’s tough and almost impossible to ‘push through.’

About mile 9, I wanted to remove my feet. Then I felt my hips were out and my sacrum was crooked!  LOVELY!  Yes I dislocate and sublux all the time.  Both hips were out of place, this means that my femoral head was rubbing on the tip of my hip joint --- WITH EVERY STEP. Needless to say, I couldn't figure out which hurt worse, my hips or feet. I knew I was close, just a little over a 5K to go and let’s face it; I wanted to get my medal and take a picture of it with my crazy nails.

We finished, as MARATHONERS were also finishing!  We got our medals, wondered over to get some chicken soup, and found our way back to the car. I still felt like I could walk at that point.

When I got home and tried to get out of the car, I had to use my arms to lift me up!  I knew I was in trouble!  I immediately took ibuprofen, and then tried to put my feet in an icebath.  OMG first time I tried that, PAINFUL!  I lasted about 2 min, and then just moved onto ICE.  I iced my collapsed arches and my wrecked hips.  I attached my TENS machine and tried to lie on the couch.  I knew I needed HEAT on my quads, but how to get heat there and ice elsewhere... so I iced, then went into the hottub, then back to ice. It was an interesting routine.  (Can someone please invent an icepack that would work IN the hottub)?

As the day wore on, I realized that my quads had ceased to function.  AWESOME!  I could not get up once I sat down! This made the toilet my ENEMY!  I turned on the percussion massager and basically took a bath in Biofreeze.  I woke up the next day with the same problem, it would take me 20 seconds or so to actually stand up, then once I started walking I was somewhat ok.  I continued to biofreeze, percussion massage, TENS machine, Ice, Ibuprofen (Physical therapy at my house)! I tried to get into my massage therapist, but she was booked!

Today, 3 days later I can finally use my legs.  They still hurt but at least they FUNCTION!   At first I wrote this off to EDS, and then I got nervous “what if I did something?” so I asked an ironman friend and super athlete.  I asked if he ever felt like this, his answer “YES AFTER AN IRONMAN – and every race is different!”

Well, I was still freaked out; I did a half marathon up Mt Greylock (2200 ft climb in first 3 miles).  I did a Half Ironman: swam 1.2 miles, biked a hilly 56, then ran 13.1 in 90 degrees, and I didn't feel like THIS with either of those extreme races.  I felt awesome after the Ironman distance aquabike: 2.4 mile swim and 112 mile bike. 

My friend was right, every race is different!  And EDS doesn't give a shit what you’re doing that day, when it wants you, it takes you!

So my EDS peeps, you aren't alone. Even in this pain I think about my race schedule for next year and still get excited about the races!  Yup, I like punishment!

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  1. I dont know what to say other than, be careful and keep up the great work.

  2. I feel like we're in the same boat, I feel bad for being able to function at the level I do, but I do not fit in amungst athletes bc I can not train or get on a eating schedule simply bc EDS does not allow it. I struggles the whole summer to get in the best shape in my life and 2 weeks ago I had what I call a 'crash'. I had zero energy, it hurt to move, my cognitive function was barely there, my gastric motility was all fired up and I've been fighting TMJ from hell. I started back at the gym two days ago after being out for about 2 weeks and I feel like I'm back at square one. Tired, unfocused and squishy. I feel like I'm bloated and weight about 15 pounds more than I do. It's so frustrating but I know I can not compare myself to the average person ;-/ Keep on fighting the good fight!

  3. Wow, Laura, that's truly awesome. How awful to feel shunned even within the EDS community. I don't feel shunned so much, but I am a bit outside, as I still have a job. I do feel very very fortunate for that, when EDS does take so many down. The last time I ran was in Kona, I did an easy jog with Stu Mittelman, and we looked at the gorgeous ocean and scenery. Good memory. I get shin splints now from walking too much.
    What I meant to write is 'YOU GO GRRL!' :D

  4. I, for one, as someone who can't function as well as you would *love* to see you and more people with EDS who can function better or push through their particular problems more in some of the online groups I'm in. I feel like a lot of them spend a lot of time talking about the severe end and it can turn into a pity party. I feel like if you're being consciously shunned then I certainly want to know if the groups I'm in do it so I can speak up about the problem (and leave if that doesn't work). Not only do I think people on all ends of the EDS spectrum deserve to have the support and the place they can talk about their problems and triumphs with EDS, but I'm sure there are things that I can learn from you that will help my life, even though I haven't been able to be an athlete for 10 years, and there may be things from my life that would help you. I'm also just plain getting sick of the part where people seem to only talk about how horrible EDS and how it's ruined their life and how it's impossible to function "normally" because that's all BS and it's like they want to ignore the people who can function better because it reminds them that EDS is not necessarily this horrible, limiting thing. Everyone who has EDS has a different experience and I think it's important for all sorts of people to have a voice in the community. Personally, I don't feel angry or jealous that you can do what you can do as an athlete or that the Anonymous poster works; it's just that you both are dealing with different things than I am and are having a different experience of EDS.

    Sorry, I hope that made sense. I'm excited to find your blog, though, and am going to start following :-)

  5. I find this a constant annoyance that people with something more visual and tangible are "succeeding in spite of..." and are therefore brave. If someone with an invisible condition does anything it simply tells the outsider that the condition cannot be real. If someone with no legs climbs a mountain he is considered to genuinely have no legs (who can argue with that?) but he has overcome. If I were to climb a mountain it would only tell the world that I have been faking all these years and am not in real pain after all. I get scared to be seen doing anything in case people think it means I'm not really sick. Insurance and "medical" people think that they can see pain, if they photograph me standing somewhere "in no visible discomfort" then clearly there is, and never was, anything wrong with me. If the guy with no legs climbs a mountain it doesn't mean his legs grew back, but it seems to have that meaning in EDS, and I hate that.

  6. yo te felicito laura, no me puedo imaginar como practicas esos de portes tan pesados sufriendo de EDS, es incredible tu valentia, que DIOS TE BENDIGA.