It took me even longer to realize how not normal I had become. Normal people don’t pass out every day. Normal people don’t get so tired after going to church that it takes two whole days to recover. Normal is not being so weak that it was difficult to lift a laundry basket or getting winded by going up and down the stairs. It was a slow realization two years ago that I was truly ill. It has even been scary, there have been ER visits, many times of passing out, a few times of passing out and then being unresponsive, but mostly it has been extreme exhaustion.
This illness started to affect my thought processes. My thoughts were foggy and I lost words in the middle of sentences. I would go to do something and then forget about it for days. I missed two very important conferences for my son. Even reading became a chore because I couldn’t keep my train of thought for long enough to finish more than a few pages.
My husband and I started referring to the “Old Heather.” The one that seemed more vibrant, that got out and did things, that wrote, that had ideas, and so much more. The worse it got the more I feared that something was desperately wrong, but the less able I was to make concrete decisions to help myself.
Then one day in November of 2010 I got a break through. I got on an elliptical machine with a heart monitor. I watched my heart rate soar into the 200’s almost immediately. I suddenly became lightheaded and wanted to pass out. I did it again another day with the same effect. Finally I was able to go to the doctor with two concrete symptoms; passing out and a high heart rate. Finally a doctor took me seriously.
It took almost a year but I was able to finally see the specialist I needed. I finally got an answer; Dysautonomia. It’s a big word that means your autonomic system is out of whack. Your autonomic system controls all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. All of mine are severely messed up. It’s not fun. It’s also rare and so it is not something most people or even medical professionals even know about.
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| Bad day |
I got to go on a steroid for a while, but that caused major side effects that made everything worse. Honestly the worst side effect was that I was bleeding constantly. One of my biggest struggles is that I don’t have enough blood. Thus I have low blood pressure. Not the good kind of low blood pressure, really low blood pressure. It’s the kind that makes me exhausted all the time, I don’t get enough blood to my brain and that makes it hard for me to think, I pass out because my body is trying to get blood to my brain and it makes me fall down for gravity to accomplish that.
So all the traditional therapies didn’t work for me because my blood loss was too great every month. The older I got the heaver my period got and thus the more blood I lost and couldn’t reproduce it fast enough.
This was compounded by my miscarriage in 2010. I almost died when I lost Elya because I almost hemorrhaged to death. We didn’t know about my blood issues at the time or I think different steps would have been taken. After the miscarriage I was severely anemic. For six months I struggled to get that under control. My doctor thinks I never recovered from the miscarriage and that is why between that and the monthly bleeding I was getting worse with every month.
If I wanted to get better I had to stop my monthly cycle. In my case the only way to do that was to have a uterine ablation or a hysterectomy. Either one meant the lost of my ability to have any more babies. It was devastating for me. In March of this year I had a uterine ablation. It was an awful experience and I ended up in the emergency room later that day because of complications.
Even with all the complications a couple weeks later I started to notice a difference. I had energy. My mental confusion started to lessen. I looked around the house and was horrified about how messy it had become. How did I not notice this before? I looked at the relationship between my husband and I and saw how much it had suffered, and the same for my children, my friends and my family. I had been afraid to drive because I passed out once while I was diving. I realized how much time I had spent at home.
Everyone around me had suffered because of me and I still feel a tremendous amount of guilt about that. If you are reading this and you are one of the people I have let down in the last four years, I am sorry. Terribly horribly sorry.
So now here we are five months after my surgery. I’m not all better, not by a long shot. I’m still learning to manage my chronic illness, but I can manage it now with traditional therapy. Learning to take care of myself is difficult, it doesn’t come naturally, but I’m trying one day at a time. There are days I forget what is required of me, or days I’m lazy and just don’t want to. But I know now how sick I was and I don’t want to be there again. It’s a learning process and I still haven’t figured it all out yet.
It sounds corny by I feel like I’m starting a new part of my life. I want “Old Heather” to be the sick Heather. I want my identity to become something that is different than what I have experienced the past four years.
Thus I want to chronicle my victories. A victory is anything that I do that is creative again, or organizing a closet out of chaos, or turning my chaos into cleanliness, or just writing again. It is being with my family in a real way, or having fun with friends. A victory is anything that I haven’t been able to do these last few years.
I can’t wait to start this new part of my life.
