Lyme is Not My Life

This week proved that Lyme Disease is not my whole life.

Lyme has been a part of my life for as long as I can remember. For many years, I went to doctors who told me I was stressed and treated me like I was a hysterical child. They couldn’t figure out what was wrong with me. So, they said it was all in my head. The severity of the pain and fatigue and the uselessness of the doctors caused no end to the torment. Knowing that there was no help and getting no relief, perpetuated the symptoms of Lyme Disease by expending so much emotional energy.

I’m 50 years old. I wasn’t diagnosed until I was 48. That year, I had an MRI that showed Lyme was literally in my brain. Whala! The doctors are now right. The neurological symptoms range from word finding problems to unsteady walking. I fell for many years, just dropped, especially if I stood quickly. I was pretty much bed to chair for about 18 months during treatment. I had to leave my job. Treatment was rounds of antibiotics, including months of IV antibiotics, heaps of supplements, special clean food choices, hot Epsom salt baths, and rest/activity routines.

In my early 20s, I started to learn about boosting my immune system. I have been practicing that most of my life. As the Lyme Disease symptoms wax and waned, I would adjust as needed. That is just life with Lyme. I didn’t know that. Thankfully we live in the age of information and I was able to find ways of managing symptoms. I was also fortunate enough to have the money to try one protocol after another in order to keep up with life.

There were times when even sheer will could not move me. In those times, I needed help to care for the children or clean the house. There were a number of times when I had to have some one take care of me. One stretch was about 10 months after my second child was born. I couldn’t even get to the bathroom or brush my hair by myself. Doctor after doctor couldn’t help. I was 22 years old. My husband and I weren’t even married yet. He took care of me. He supported us. I am forever grateful.

When I was higher functioning, I worked as a nurse. Having been so sick helped me to be more thoughtful and compassionate to my patients. I made good money, especially during holidays. It is very demanding work. I worked for an agency that provided temporary or fill-in placements. Going to new facilities and getting 15 minutes of orientation didn’t bother me. After a while of working a few of the same places, I would be handed the keys because I was good at my job and they trusted me.

I taught children and Sunday School. For a while, I ran our children’s ministries department at our small New England church. I could teach 30 children while in pain. I had learned how to dissociate when I was a child and teen suffering terrible sexual abuse. No matter how I felt, I wanted to give the children the tools to stay safe and live well. Teaching the Golden Rule -Do unto others as you would have them do unto you… The Ten Commandments and life lessons from so many people in the Bible and it helped me as much as them. I even babysat sometimes for additional income and to help friends.

We had a drama team of a dozen teens for five years. I was 30 years old when we started it. We traveled around to coffee houses and churches and some outdoor venues. We went on retreats. We did 30 Hour Famines, which are overnight group events full of activities to raise money for starving children. All through those times there would be varying degrees of pain, fatigue and disability. I wasn’t as good at managing my energy then. I would spend it and be spent. It was fantastic fun, though.

From my early 20s until I was 47 years old, I participated in our state’s Right to Life organization. As a board member and President, Chair of the Educational Trust, and a Chair of the Political Action Committee, I took on a lot of responsibility. It was often very stressful and difficult. I used to say that it was like herding cats to run a committee of 15 people and get things done. I learned how to manage events and hire people to speak and I learned how to speak myself. Now I speak to a variety of groups professionally.

I’m celebrating our 27th wedding anniversary. My five children and two grandchildren are my pride and joy. They are all unique, beautiful people going in their own directions. Did I mention that they are homeschooled? All five got their diploma and graduated with extra credits in their desired field of study. None of them had it too easy. They also have Lyme Disease. It is New England and we live in a clearing in the woods.

It may sound like I am tooting my own horn. If you have read this far, you might want to know what I am getting at. Lyme Disease sucks the life out of us. It does, No kidding. But it is really important to find the things you can do and do them. Learn something new. I didn’t even talk about how I learned to teach certain real estate acquisition strategies. Create some art; music, dance, sculpture, -paint, color, build, -write, speak, explore. Try things. Try going for a short walk. Try to move to music. Try to cook something new. Try to think of a story of what you would do if you had more energy. Try to imagine how it would feel. Try to connect with other people who are trying.

Don’t let Lyme Disease win! Don’t say, “I lost everything. I can’t…” Don’t commiserate

You are still breathing. You have purpose. You are important.

Try until you die.

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