Thursday, July 29, 2010


Dear EDS,

As I was looking through different Tumblr blogs today I ran into the quote "Pain is inevitable, Suffering is optional." I know I've heard/seen this quote before but for some reason today it seemed especially relevant. Pain is just something that comes with the EDS territory but that doesn't mean it has to control my life.  The last time I met with my genetics counselor she said something to the effect of "no one could ever blame you if you just sat around all day because of the pain you live with." It really meant a lot to me because I don't think people realize how painful of a condition EDS actually is.  I definitely do have days where I do nothing but sleep or lay on the couch and watch movies but I try to avoid that as much as I possibly can.  Just because I have EDS I don't want to miss out on having a life.  I choose not to suffer because, well honestly, life would just be awful if I did.  I really don't know how to live any other way.  Living in constant pain isn't easy but I feel like constantly suffering and being depressed because of it would make life a whole lot harder than it already is.  Staying positive and really working hard to focus on what I can do and how lucky I am has made living with EDS lots easier.  I'm not saying it's never hard for me (I do have my days where I just cry because I wish it would all go away) but choosing not to suffer makes life nicer.

I think this quote is true for many EDSers because we do live with so much pain from the dislocations, bruises, cuts, and everything else that comes with this lovely condition.  If 'healthy' people had to live with this condition even just for a day I think they would learn to not take everything they have and can do for granted. I think what I'm really trying to say is that even though we do have to live with constant pain we don't have to let it control our lives. We have the choice to let it take over and suffer or to take control of it and actually live to the best of our ability.

Anyways... with EDS comes lots of headaches...literally.  I don't remember a day where I haven't had a headache.  I went to the neurologist a few days ago (the guy was nuts, I thought I was being Punk'd) and he had me get a brain MRI.  That was all clear so he's putting me on a super low dose of a beta-blocker to hopefully help prevent these headaches.  Beta-blockers are typically used for people with heart disease because they help lower blood pressure.  I personally have super low blood pressure (not sure if that's EDS related or if it's just because I do) but I was a little worried about this because if my BP goes any lower I'll get really dizzy/faint.  I talked to the pharmacist and she thinks putting me on the really low dose will be fine so I'll start those drugs on Monday.  I'll keep you guys updated on how that goes.


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