You are not Sick.

** It is important if you have any collagen defect that you have an echo and /or an ultra sound to make sure that your heart and blood vessels are not dangerously impacted. Talk with your doctor about this and follow the safety limits they give you **

Our medical system is a well tuned machine for getting sick people healthy again. If the illness is caused by outside agents ( bacteria, viruses, etc..), the medical system is at its best. If the illness is caused by lifestyle choices ( smoking,jumping from planes without parachutes, etc..) it is pretty well geared. Doctors are trained and mentally programmed to make people well and healthy. What happens if you are not sick?

I have EDS type 3, hypermobile. It is a genetic disorder of my collagen. I am not sick. My husband likes to say that I am broken. Some days,it really feels like it. A lot of days, it does not. What it means is that my collagen gives me different limits and life parameters than other people. Like all Collagen disorders ( EDS, Marfans, and many others) it manifests as a spectrum. My daughters both have EDS as well. One of them has Hypermobile thumbs, but not fingers. The other has Hypermobile fingers but not thumbs. You have to listen hard to your own body and understand what it is telling you. But the chances are that if you have any kind of collagen disorder, you also have dysautonomia. Again, this may have many causes and many effects. Your symptoms may not be the same as mine. But I can guarantee you one thing, the most common advice you will get from other people is the worst for you.

Here is a scenario you are familiar with. You are having a "bad" day. For me, this means that when I move fast, I am light headed, that my heart races and I get chest pressure. My vision gets blurry to double, and concentration is sometimes just impossible. For you, it might mean you can not get to standing without passing out. I am not minimizing the impact this has on your life. Now, you look a little off, or you are behaving a little off and the people close to you ask how you are. "is anything wrong?" "are you ok?". If you are honest and tell them you are having a bad day and feel really crappy, they will reply " well, get some rest and feel better".
You may have even had doctors tell you this. Feel bad? Rest, let it pass and then try again the next day. if you had the flu, or had eaten some bad chicken burritos the night before, this would be excellent advice. When you are sick, you need to rest to give your immune system more energy to fight off the intruders.

But. YOU ( and I) are NOT sick.

Rest is your enemy.

Can't get out of bed? Do what you can. Do leg lifts, have someone bring you soup cans and lay there lifting cans. WORK your muscles. Exercise, movement, activity is your friend, even when you think it is killing you.

Exercise intolerance is a symptom of dysautonomia. Exercise every day until you reach your personal limit,then stop. Do it again the next day. And the next. Eventually, your limits will slowly increase. You might never be "average" or running a marathon, but you will be more functional.

Malaise, fatigue and depression are all end results of dysautonomia. First step is to work with your doctor to treat it in ways that make sense. Second step? Change your attitude. Yep, you will be tired. Keep moving anyway. Yes, laying down on the couch and watching XFiles reruns is going to sound so appealing. A 3 hour nap in the middle of the day will scream your name. it might feel like you are so exhausted that if you get up and do those dishes you will just fall on your face. Taking a walk with your best friend or family members might make you feel like you ran the boston marathon. Don't give in. Keep moving. Get stronger in any way you can.


Seriously. Push through. So WHAT if you are tired, push harder. Having dysautonomia does not mean you can not do things. It means that doing them will sometimes be harder. At first, almost everything will be impossible. Especially if you have been resting to heal for a long time. Doing 2 situps will make you cry. Go ahead. Cry. But do the situps. After a bit of time, you will be able to do 5 then 25 then 50. Blood flow is a combination of the pressure of the veins and arteries pushing back against the blood and muscles pushing on them. When your blood vessels have weak or stretchy collagen,you better have really strong muscles to compensate. Unfortunately, collagen disorders make it harder to maintain muscle tone, so you have to do this every day.

This is not a prescription that you can do a 10 day course of, feel better and stop. This will be a lifestyle change. Dr. Lavallee ( EDS expert) recently told me " I have to eat every day, I have to drink water every day, I have to shit every day and I have to exercise every day". He told me the only day off I should allow myself is in the hospital for surgery or when I have a fever. It is a hard pill to swallow. I am not perfect about it, especially on my really really good days. But exercising more has meant that I have more and more of those really good days.

People try hard to be kind, we fight to be recognized as having an "invisible illness", and have them understand our limits. When someone offers to carry something for you, or to push, pull or move for you, tell them Thank You, but NO. Sorry, you do NOT have an invisible illness- you have a genetic defect that means that you have to push your body harder, not accept more assistance. Now, you might not be able to carry the bag to the car and still lift it up and get it in the trunk. Tell the offerer of help that you are going to carry it, but might need help loading. Carry it. Then TRY to load it in before handing it to someone else to load. Just the act of trying is working your muscles as much as you can. A few weeks of trying and you might hit a day when you can load one, but not the others. Then you might be able to load half the cart of groceries without help. Depending on your condition, even the whole basket ;-)

I can not tell you how strong you can get, but I can guarantee that unless you are already doing strength training exercises every day, you will improve. You will hurt. You will get tired. You will cry. Do it anyway.

All in the Family

Last Thursday I took both of my daughters up to see Dr. Bader at the NE Indiana Genetics Center. Sure enough, as I expected, they were both diagnosed EDS. They only had Bieten scores of 7. One of them has thumb hyper and not finger, the other has finger, but not thumb. Isn't it odd how all of this sorts itself out in different bodies?
We sent off their blood for testing to see if they have the same genetic blip that I do.. but my biggest hope is that by being diagnosed while still in their late teens, they can make smarter choices and avoid some of the complications/challenges that have beset me in the last year.
We expect to get the blood test results back from my parents within a week ( they sent theirs in several weeks ago), but it will be July before we get the results back on the girls.

On a more positive note, this Thursday is my first trip up to see Dr Lavallee. While I am dreading the long early drive( especially since it looks like I may be making it alone), I am very excited about getting some more insights and some more treatment/prevention tips and tricks.