Tuesday, October 15, 2013

EDS Strikes Again

I try to stay positive, but sometimes I can't help but whine a little.   I do feel I owe some of the readers too, because I do have several EDS followers who have told me they feel inspired by me and they know they can "DO IT" - no matter what that "DO IT" is!

I get so frustrated at the EDS community, I have mentioned this before in the many other EDS related posts , but I have received basically hate mail from some that are mad at me for posting that I CAN do this stuff.  Some say "I must not have EDS if I can do this" some say "stop posting things because you make me feel bad."  What I say to them is.. I advocate being healthy and pushing yourself to YOUR limits.  YOUR limits may be taking yourself from not getting out of bed all day to making an effort to sit up 2 more times than usual.  It may be trying to walk a little further, one extra trip to the kitchen.  It may be trying to work up to walking one mile. It may be for my crazy self, doing the ultimate challenge for your body: attempting an Ironman.

Conversely, I am brought to tears on  a regular basis by the really awesome emails/messages I receive.  Most of my readers are awesome. I just LOVE to hear the stories of how you have gone from point A to point B.  (Both my athlete friends who have gone from 100 lbs overweight, smoking, alcoholics, to those with EDS who decided if I can do this, they can do XYZ).

I am 18 days out from my Ironman, and I do it for me, but I do it for all of you too!  I carry each and every one of those stories with me!

Anyway!  They point of this post is to just tell you a little more about training with EDS.  It has it's ups and downs!  Like anyone training for an any event!  Some days you feel good, some days not. Some days you have a 'sore something' some days not (well that one is not true for EDS).

The thing is, you LOOK normal, and you just WANT to compare yourself to everyone else and you just can't!  I have learned, although reluctantly, to look at past performance, compare to current.  I can't even count on 'increases' in performance, what I have to assess is "How did I do today and how did I FEEL" vs "How did I do yesterday and how did I FEEL."

Each day is different.  May athletes with an injury of some sort can sort of relate.  Say you have plantar fasciitis. You know your feet are going to hurt. You can tape, massage, wear the boot. You KNOW what is needed to mend it, and you know that each day you rest it, you will get a little better.

With EDS, that is not the case. You can wake up one day and have a knee, hip, and shoulder out of place.  Next day, that knee is back where it belongs but then your fingers are out and your neck is killing you.  It is almost impossible to keep up with all of it.

For me, I tend to have to deal with 1 or 2 issues at a time.  I have an extremely high tolerance for pain, so that is good. BUT with that comes some risk. I have to KNOW what is doing damage, vs what I can push through.

This past month has been pretty brutal for me.  I do think the Fall is terrible for my body.  The temp and pressure changes suck the life out of me. When I did my longest run, 20 miles, my hip was out of place.  Which means the head of my femur rubbed on the hip socket for probably 15 miles. It caused major inflammation and loosened the connective tissue, making it easier for the hip to continue to fall out.  I could not stand up/ walk for 2 days and I had a hard time walking for the next 2 weeks. Riding a bike was ok because of the position of my leg rotation (YEA TRI BIKES).  I didn't actually run again until my half marathon on Sunday.

The difference of someone with an injury and a genetic disorder like EDS, is I really have no idea what might be wrong on any given day.  I could be perfectly fine one day, then a pile of mush the next day.   Saturday this week, I had  a long bike ride. I had some really weird things hurting; my fingers; my knee caps; and my big toes. That isn't typical for me!  I took meds, went to bed, and hoped for the best for the Half on Sunday.

Sunday, I loaded up on antiinflammatories, taped my knee and hip and hoped for the best.  Before I even started running, my arch was collapsed.  I now carry a chiropractic activator and I put the arch back at least 5x before the start.  I was also fighting a 3 day long migraine.

Believe it or not, I had a great first 10K.  I believe my 5K pace might have been PR, it was around :42.  Then I hit 10K at 1:28, that was definitely a PR, cool right? - it started to go downhill from there.  For some reason my right knee, ACL felt very 'tight.' With EDS that can just happen!  Then right foot arch was collapsed again, something was up with my left heel, left patella was out of place and left hip was out.   I was really trying to focus on keeping my hip in place.  For those of you who have ever tried to focus on 'form' you'll get a little of this.  For every step, I had to focus on the hip and leg, make sure it did not go outside of the range, and sort of 'clench' my butt to pull it in.  EVERY STEP!

At some point, I ended up with a cramp under my scapula.  How does one do that while RUNNING? well, if you have EDS, you don't need to 'do' something, sometimes your stuff just moves!

By the time I got to mile 10, I had enough, but I had to finish. I don't know the word "quit."  I slowed down to a pace that I knew would get me through IMFL and stayed there.  I slogged through the last 3 miles and got my medal!  To give you an idea of pain level, I took a percocet and it did NOTHING.

I knew I would have trouble walking the next day, it's just how life goes.

Sunday was as I expected, it would take me 3 steps to get upright. I walk like someone who needs a hip replacement.

Monday I saw my massage therapist; For 2 hrs 15 minutes!  NOTHING was normal.  My ligaments felt funny, such as the ones in my feet actually moved over. Same with my knees. The insertion points were literally not where they belonged.  Also typical for EDS.   My ITBands are normally rock hard and really painful on massage or foam roller, however yesterday it was my QUADS that were beat up.  That never happens!  I have no idea why the switch, other than EDS has a mind of it's own!

I really never know if my body is going to  show up or not. I don't know on any given day WHICH body part will be out (it's not a question if IF, it is "which one").  And I have a mild case of Ehlers Danlos!

This isn't a pity post, no worries.  I know what I'm getting into when I do these things. This is more to spread some awareness of what we deal with, also to show that yea- I'm out there, publishing some really cool stuff, but it isn't' all rainbows and unicorns!

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  1. I'm sorry that those people made you cry. That sucks. I wish it were as easy as "just don't listen to those fools" but it's not. Keep up the good fight! I don't know if I'll get to where you are (or want to) but it took me two years to go from swimming for 5 minutes at a time, to being able to start jogging without it killing me. And in between that it took patience, physical therapy, and learning to walk properly (also shoe inserts). And my EDS is not so bad...comparatively. Regardless of how bad our EDS is, it still SUCKS!!! You go girl! -Courtney

    1. Ah let me re-word it! The GOOD ones make me cry! :) Thank you!


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