Monday, April 14, 2014

That's Just Crazy Talk

Today's National Health Activist Writer's Month Challenge Post topic is to write about: What’s the most ridiculous thing you've heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

Again, I've got a couple since I've got a couple of conditions.

#1) You're going to die early from dysautonomia because your heart rate is always so high that your heart will just wear out and stop. The truth is you could die early from dysautonomia, but it is much more likely to be from passing out and hitting your head on something and having brain bleeding or from having either the type of dysautonomia I have (pure autonomic failure) or the other terminal type of dysautonomia (multiple system atrophy) and you catch a cold or some other infection and your body is just too weak to fight it off and you die from an infection. But not from your heart wearing out because your always in tachycardia.

#2) Having Ehlers-Danlos Syndrome is just being double jointed, it's no big deal. No, it's not just being double jointed. Our joints are constantly dislocating and coming out of their sockets multiple times a day and every time it does that it does more damage to our tissues and joints. We also have problems with healing from surgery because our stitches don't like to stay together because our skin is too elastic and a whole bunch of other stuff with collagen in our bodies (which is everywhere I'm learning). We have just found out, in fact, this is probably why I quit breathing in my sleep because my windpipe is collagen and relaxes too much when I sleep at night and closes so I can't breathe. We also have teeth issues and a whole bunch of other stuff. All of this popping out of place causes long term damage and daily high levels of pain and the pain killers usually don't work on this type of pain either. EDS also has a huge amount of people that look extremely young for their age (like me) because our skin is so soft and smooth, it's almost like we never age.

#3) If mitochondrial disease is an energy disorder, you should be able to take a nap and feel better. So why don't you just take a nap to get your energy back. A) I do take naps, multiple times a day. B) It doesn't work that way. With mitochondrial disease our bodies literally do not know how to make energy. It's not like we can take a nap and feel all better. Or get a good night's sleep and be ready to go. We do not have the ability to make energy so we  are always trying to catch up. Some days are better than others, yes, but we are never going to be to the point that we have the same amount of energy as a normal person, ever. Because we just don't know how to make the energy.

#4) People with gastroparesis just have eating disorders or don't want to eat. This is so far from the truth. I would love to be able to eat all kinds of food. I was a foodie for goodness sakes. I still watch Food Network all the time. We just can't eat without immense amounts of pain, distension, constipation, diarrhea, gas, and more. We may seem like we have eating disorders because we are constantly refusing food, but that's just because we are trying to save ourselves from the trauma that would come if we did eat.

#5) Tube feedings are a good way to lose weight. Since I've been tube fed I've seen news articles on brides paying several thousand dollars to get NG tubes for 2 weeks before their weddings to lose pounds to fit in their dresses perfectly, I've been in support groups where people have said that they want to get a feeding tube to cut back a few pounds, I've had people ask me how much weight I've lost since I've been on my feeding tube. Well, again, it doesn't work like that (always) either. I've gained a ton of weight (after the initial loss getting used to it) because for the first time in my life I am not malnourished and I am absorbing calories and nutrients properly finally. I've struggled with malabsorption issues for at least the past 8 years consistently and now I'm on a regimen where I am able to absorb nutrients so I am gaining weight. Imagine that.

These are just a few of the weird and crazy things I've heard about some of my chronic diseases. There have been many more, trust me. But I didn't want to bore you with all of the stories. But here is just an idea of why it can be frustrating to deal with people who think they know what you are going through better than you and you have to listen to their "advice" and "support" when it's really just crazy talk.

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