I guess this post is a long time coming. About a year ago I was diagnosed with an illness called dysautonomia. I had the tilt table test which I failed. Then I had the qsart which I also failed. I had a great doctor who diagnosed me. He was very friendly. I knew what he was going to say when he said my autonomic nervous system wasn't functioning right. I said dysautonomia. He said dysautonomia. I read about it and I still don't understand every thing about it that I would like to know. But the words were deeply satisfying and crushing at the same time. I finally had a name for the hell I had been going through but, it also meant a new set of circumstances..again.
He also told me they needed to do a skin biopsy. Which I was like what? They told me it was to test my nerves in my skin. So got the paperwork to schedule that. They scheduled it rather quick.
At the time I had been excited about going to school for licensed medical massage. My doctors nurse told me I may want to hold off on the decision and just stick to what I am doing now. I was sort of puzzled and put off by that comment. But I went ahead started getting the paperwork together for school.
The day I had my biopsy I wanted to throw up. Nothing new there. I am chronically nauseated. No seriously chronically. Figured all would be fine and I can start school in September.
Well it wasn't. I received a phone call and they told me I had something called small fibre neuropathy. I told the nurse ok. What do I need to do. She had me come in. Met with a new doctor..my one I had just met months before had retired. This guy was telling me about the dysautonomia and the neuropathy. After he was done talking to me the nurse came back in. She asked how I was doing after all that. I told her fine. I don't understand much of it. Except I am broken really broken. My main organs don't care to function like a normal human being. But I have never liked normal. At least I now knew why nothing worked right. 2 heart ablations, dizzy all the time in the hospital all the time for dehydration. Even though I stay hydrated. Reality kicked in.
I told her I just have to figure out how I can balance this and school. I told her starting in the fall was going to work well for me cause my dysautonomia causes me to almost die every summer. She explained to me nicely this time that due to both my dysautonomia and especially the neuropathy that they weren't going to let me. Needless to say I was crushed but I figured I would go home call the school and see what they said. I thanked her for the advice and I told her I have a lot of reading to do to find out how to conquer this illness and left.
Crushed Deeply Crushed
Got home and I called the school to tell them what the nurse has said. I was still so excited about starting school. It went with my reiki healing etc. I was saddened, crushed, destroyed, heart broken..to say the least. I got off the phone and cried. I am not one for depression cause it really has no place in my life. Being depressed isn't going to fix anything. In my world anyway. If I can't control it then there is no reason to even be depressed about it. But my dreams were destroyed in one day over one diagnosis.
Yes my dysautonomia is a result of my carbon monoxide poisoning. I have accepted that I have it. Have I accepted that I have to live with it yet? No I think that is a big challenge for me. To live sick. I live in and out of the er so much I don't even want to go anymore.
Constant nausea, constant dizziness, full face migraines, skin itchy or burning, being allergic to everything under the sun...including the sun itself. I don't know how to just be sick. I have days when I am stuck in my bed. I get so mad at myself that I am not getting anything done. I have been working around that these days.
I started Iv saline therapy once a week because no matter what my body doesnt seem to retain salt or stay hydrated. With dysautonomia you need to live on salt. Try finding things to eat with the amout of salt we need now days. I got so dizzy one time I opened up one of those fast food packs of salt and downed the sucker.
I also started a new medicine which made my potassium low so I was just in the hospital Saturday night. They just need to give me my own room already
I have many doctors, many tests and many appointments. It is never ending. Being chronically ill is a nightmare to say the least. It is just how you go about it that matters. It isn't easy people look at you and say well you look great are you feeling better..sometimes it is better to lie and say yes. I think it is because I don't really want to face the full reality of the situation. I have been facing some of it. But all I don't know. My goal is to keep on going on the good days and the bad.
While I try not to let my illness get in the way of real life at times it has. I have missed out on things, had to cancel plans etc...special things. They will not allow me to drive. So counting on everyone drives me mad sometimes. One day full reality may set in and I will find a nice corner to go cry in for a few days until I can fully deal with what I have been given. My health is a daily battle. When I think it is better it goes downhill or I end up in the hospital. I think I am fooling myself that one day I will beat this, sadly deep down I know I won't. There is no cure for dysautonomia at the moment. Its range of what it does to our bodies are endless. I ask don't take pity on those who are chronically ill..instead take in that we have a special kind of strength that keeps us going through all we struggle with. Peace and Healing
