There’s been a lot of talk about Lyme disease after a few celebrity voices have come forward speaking about their experiences with this complicated disease. I read each one, hoping that one of them will somehow tell me something I don’t know. I hope that perhaps one of these celebrity voices with their money and influence will somehow have discovered something new that will actually help the hundreds of thousands of people suffering. So far, no luck yet.
I have Lyme disease. I am in control. Lyme does NOT have me. It’s not going away. I am not going to wake up one day and never experience one of the wacky issues that comes with having Chronic Lyme. I will move in and out of treatment. I will always be on the lookout for something new to help control it.
Every once in a while I am reminded about how I used to be. The person that Lyme controlled was sad, scared, and worst of all I felt so guilty about having Lyme and how it was going to be for my family. The issues with Lyme got really bad for a while. I was pretty scared that for the rest of my life I was going to be a victim of this invisible monster that had me in its grips. I wasn’t going to have any choice about the life I lived, I was just going to watch as my body started to fail and I was going to be bed bound as the rest of the world went on without me.
Admittedly, I was so afraid of the sick pathetic thing that I was going to become that I didn’t want to live that long to be a burden to my family. I didn’t want to be that pathetic secret in the bedroom that my family wanted to forget. I didn’t want to be suicidal. But I didn’t know how to stop it. I know now that depression, anxiety, and suicidal tendencies are not only part of the disease, but also reactions for the tons of medications I took to control the symptoms.
I am so glad that time is over.
I have Lyme disease. I have reoccurring co-infections, Fibromyalgia, anxiety, tremors, migraines, trouble with high and low temperatures, memory issues, attention issues, balance problems, I fall down a lot. I need help sometimes. I have a service dog who works to make me feel better and is there when my days are really bad to help me out. I can’t be around sick people. I have a hard time being still for longer than an hour, so traveling is hard. But, none of these things make me lazy, stupid, crazy, or seeking attention. Those words are for people who don’t understand and won’t even if you tried to explain it.
I am a great Mom. My children understand my disease. And like anyone with a disability, families change and adapt to overcome the limitations. I have heard the sad stories of people shaming the children of Lymies because they don’t understand why the parent isn’t more active with their children. Thankfully I’ve never experienced this in my family. You do what you can, do your best, and accept you limitations.
I love my husband so much that sometimes it hurts. We love to travel and have been doing a lot of it lately. I love sitting on the beach and letting the warm sunshine warm my muscles and skin. I am so happy that for right now in my life I have the ability to get out, explore, and understand that this disease doesn’t control me.
I have a lot of really funny friends, who probably have forgotten I have Lyme. Sometimes I don’t feel like doing much more than reading a great book. And that’s okay. I don’t take much time for being sick.
Lyme isn’t my life. My life is so much better than something so tiny. I might have Lyme disease, but Lyme does not have me.
Live.. Live well.. Live free!