Basically it's a collagen deficiency. Imagine collagen as the steel rods in concrete for your body. It's what holds things up, it's what makes all of your skin and your hair and your ligaments and tendons strong and effective. You can think of normal collagen as straws packed into a tube. They don't really move much, and they're in these really structured cables because they run parallel to each other, creating a rather strong formation. Unfortunately, mine is like someone took pieces of paper, tore it up, tossed it in a mason jar and shook and said "Here! This should do!" So what that means for me is that my collagen doesn't keep that structure. It just flops around not really knowing what it is supposed to be doing. Fish out of water, dropped the bag of MnMs kind of thing. It's just everywhere. That's what makes it so easy for me to dislocate my joints. My ligaments stretch far beyond the normal range of motion that one should have, and if I put pressure in the wrong place at the wrong time, I won't have the ligaments and tendons to fall back on. The joint just pops right out. The blow back of THAT is that my muscles pick the slack from my lazy ligaments, and so they fatigue much quicker than those of a normal person. That's not all though - since they have a different structure than other people's muscles, that also contributes to their fatigue rate. There's also fun things like my vision - it changes constantly. My ocular nerve is effected, and because there are also hormone related changes my lens in the back of my eye can shift with my hormones and honestly the list just goes on and on. The unfortunate part is that (as I suppose you can imagine) dislocations cause pain, and so does fatigue. I can dislocate a rib by putting on a backpack, and a hip by standing up. (Not an exaggeration, that happened...) Most of the time the recommendations for those of us with type III EDS is physical therapy, occupational therapy, lots of other specialist visits, pain medication, and lots of accommodations in your daily life.
Instead, I follow a vegetarian diet, drink lots of water, upped my sodium intake, (for low blood pressure from an associated disorder known as postural orthostatic tachycardia syndrome) have physical therapy appointments, and rest a lot. Thankfully I have a wonderful support system and an incredible church family who stand by me no matter what I'm going through. It's great - they make it possible for me to do all kinds of things that I otherwise wouldn't have been able to do, like for instance, I moved away from home last year, and now live upstairs in a church family's home. I know I wouldn't be half as successful without them all in my life. :)
If you'd like more information about my disorder, then there are a whole bunch of websites that you can visit. :)
Our WIKIPEDIA page is actually really good. Some aren't, I know, but this one definitely is. This site is a location where you can download more information about EDS related pain. EDNF.org is the Ehlers-Danlos National Foundation site - it's great. So much information. The last site I'll give you is a basic, short, historical overview of EDS and some of the diagnostic tools used. You can find it here. :) Hope this helps you understand my posts a little more. I know that not all of them are about EDS, but a lot of them at least involve my symptoms, or were brought about by me sitting in my room or laying in bed, and all I have the energy to do is type.
Cheers, and happy reading!
This is me, and Justin Merriman, my best friend/wheelchair pusher/boyfriend. He's wonderful, but is terrible at making normal faces when cameras are involved...
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