My Illness in My Words

Copied from facebook July 8, 2013

I wanted to sit down and take the time to fully explain everything in one place for anyone who is curious. Mostly I want to write this because when I do pass out, I can't speak for myself. This is my chance to speak for myself, in my own words.

     I have two types of a disease called Dysautonomia, which affects things you can't control such as heart rate. The first type I was diagnosed with is vasovagal syncope. This is responsible for when I actually lose consciousness. It's more episodic than constant. The second type is called Postural Orthostatic Tachycardia Syndrome or POTS. This is one that is responsible for my day to day symptoms such as fatigue/lack of energy, dizziness/lightheadness, nausea, brain fog/memory trouble, insomnia, headaches, and some vision changes. Together these two are responsible for the way I am and the way my health behaves.

     Dysautonomia has no cure. And there are very limited treatment options. I've tried many. There are different medicines that I have tried that were unsuccessful and some that made my condition worse. One even landed me in the hospital I reacted to it so strongly. Many people with Dysautonomia have strong sensitivities to medications, but no one has really been able to tell me why. But because of this, medicines just aren't an option for me. There are other "natural" treatment options that I've tried unsuccessfully. The only treatment option I have left at this point is to become an "exercise fanatic" and work out constantly. However this is difficult for me because of my daily symptoms. I'm currently working with a physical therapist to try to work around my symptoms and not make myself worse. I have heard a few success stories for this plan, so I am hopeful.

     Many people have wondered if my eating or blood sugar is related. It isn't. My blood sugar has been fine everytime it's been checked and I've passed out after eating a full meal before. The two are really unrelated except the nausea sometimes makes eating difficult.

     Right now I have no doctor appointments set up and no intenions of setting up anymore appointments. Doctors and paramedics are largely unfamiliar with Dysautonomia and therefore cannot help me. In some cases, they have made it worse. I ask that the paramedics not be called when I pass out. Having to explain my condition to paramedics who don't seem to believe that I know what I'm talking about minutes after waking up just tends to put me in an ill mood.

     I know that seeing me pass out is scary, but I need for you to not freak out. Should you be around me when I pass out, lie me flat on my back, prop my feet up, wait, and don't panic. I should wake up in 10-20 minutes. If I don't, have trouble breathing, or don't have a pulse, you may call the paramedics and I promise to not get upset.

    I am trying to learn how to deal with this in my life. I'm having to change how I do certain things or just not do them at all. I understand that you care, but it is important for me to set my own limits and try things on my own when I feel capable. That will be the easiest way for me to adjust into this change. I will tell you if I need help or if I feel like I'm about to pass out. Part of coping with this has been learning the difference between just feeling puny and knowing I am about to pass out. So hopefully I will be able to let you know what's happening.

     Also, I am never sure how to answer questions like "How are you?" It isn't that I don't want to tell you or that I think it's private. I'm just never sure how to answer those questions because my health changes so very quickly. So please have patience with me if my answers seem weird or cryptic to those types of questions.

     I'm sorry this is so long. I didn't intend for it to be quite this long, but this is a large part of my life now and I want my friends and family to understand it.