Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Thursday, December 11, 2008

The Disorganization of Dysautonomia

I mentioned in my last post that I wanted to give an update on my son. I wanted to talk about progress. Boy, I am glad I waited a couple of days! No sooner had I started to feel like I finally understand and can "handle" this disease, my young boo-boo goes through three days of unmistakable decline.

It started with him not waking up on time. Part of his sleep issues pertains to his circadian clock. In keeping it short, it doesn't work. There really is no sleep schedule. Heck, there is no schedule in his whole life! I have to be the one to say, "it's time to eat," "it's time for bed," "its time for a bath," etc. Nothing goes off in his head. Somewhere along the line, the ability to regulate and make a pattern out of life doesn't happen. He will go hours and not remember if he ate. Well, first he didn't wake up on time. It was nearly 10am before I saw him. Then he was lethargic. Not a good sign.

Lethargy means that it doesn't matter how much sleep he got, the fatigue is going to set in and take over. He collapsed into the recliner, putting his feet up as high as they would go and shivered. Not good. The heat was on and he is shivering.

He wasn't hungry. Uh, oh. Most parents know that to be a sign of ill health, and he is no different. Not even an egg sandwich with bacon could coax him into putting anything down his throat. Instead, I just made sure he took his meds with milk and let him rest.

The first day he was just tired. The second day, the joint pain began. His wrists, his neck, his back, his foot. He was constantly sitting down and didn't get to any of his chores. He barely got dressed. Meals, what little they were, were served in front of the couch, where he sprawled with his legs propped up. I really should have seen it coming by now.

By the third day, he didn't even want to walk across the street to his friend's house. And sometime right before dinner, he excused himself, promptly sat down and passed out.

I will say, he is always so gentlemanly about it. It never looks like those faints you see on television (he has had these, but we no longer find him sprawled against a door, or half under a table anymore). He can feel the weakness coming, the "confusion," he calls it. And I sure have shouted enough, "Sit down, when you feel like that!" Well, that is what he does. Sit down and pass out. Nice and neat.

Yeah, until he wakes up. Then he is is monosyllabic, drooling lump with little coherence and less responsiveness. It is best just to leave him be, propping his legs above his heart until he is over it.

The good news (yes, there is good news!) is that with the meds, he recovers faster. Two or three hours instead of two or three days. I am hoping we will be doubling his florinef again soon. Hopefully, that will stop these infernal faints for longer than a month. He has been having at least one once a month now for the last four or five months. Not a single break! Just as I get hopeful that he can make a month, the spiral starts.

Today, we were back to the joint pain and fatigue and little appetite.

I started this post because I am frustrated. I know there are others who are dealing with worse when it comes to dysautonomia/POTS. I know there are children who can't get out of bed at all. Children with IV lines because their stomachs can't take in enough fluids. But I just want some sort of routine. Some sort of normalcy. Don't tease me with a few good days only to snatch them away.

And when does this thing start to get better? The stat is 80% go into remission. I am trying not to be impatient, but realistically, my little boy has been getting worse for five years now; since he was eight. Are we on the upswing? Or just leveling out? No one has answers, except the mantra to ride it out. Yeah, that only means his whole childhood.

No more school, no more sports; no bicycle rides or skateboard tricks. No walks in the woods or making scarecrows. We barely get to the library these days. Nothing but: take this bunch a pills, dring 2-3 liters of fluid a day, don't forget your Miralax, get dressed, brush your teeth, go to sleep, put your feet up, let me take your temperature, your heartrate is too fast-sit down, blah, blah, blah.

*Sigh* Yes, I am venting. Sorry about that.

I guess a lot of this is coming out because we have to see a psychologist next week to discuss my boy and Social Security. I loathe the entire thought, and yet, I will be there. I guess I am thinking I should sound like those wonderful mothers you read about in the sunday paper. You know, the mother who never stopped believing in recovery and created an entire new child development program to help her child. Now, she tours the world, giving speeches to show us all how it all came together.

I don't feel like that. I feel helpless and sore. Sore at heart and sore in mind. Frustrated and angry. I try not to say it, but I want my life back. I want my smart, energetic little man back. I hate dysautonomia. I hate not having a life and the electric wheelchair that is coming tomorrow. I don't feel gifted or blessed. I feel tired and just want a normal day. A good old-fashioned regular day.

A day when my son smiled, happy to be awake and already impatient with questions of what we were going to do today. Sadly, I realize those days haven't been around for many, many years. And, I miss them. I am sure he does, too.