About four years ago I was diagnosed with Chronic Neurological Lyme disease. I sometimes feel like I need to be confessing this to a support group. “Hi! My name is Ivy and I have Lyme Disease.” I know it seems dramatic, but unless you have lived with someone who has it, you cannot understand the impact.
Being a poet, teacher, mother, wife, and daughter had to be redefined. In order to get the disease in check I took multiple antibiotics to put the lyme into remission. For about three years I was good. I didn’t have any physical or mental limits from the disease.
In January of 2014 I had a “flare.” This involved me developing debilitating joint pain, memory problems, cranial nerve palsy, hearing loss, difficulty walking and a myriad of other problems. Before I was diagnosed they thought it could be MS or a brain tumor. When they came back with Lyme, I had no idea what that would mean. It evidently means something different for each person, as it is the great imitator.
I tried to push through the pain and exhaustion, which only compounded the problems. I would go to work, clean the house, do all of the things that I always did, but instead of sleeping and being able to get up and do it all over, I would wake up the next day in pain, exhausted and depressed. It was like my body was the enemy. If I did anything strenuous I would end up having to recover for days. Now I usually only have a short recovery period…somewhere around a four hour nap.
My doctor and I changed my antibiotics several times to get the “cocktail” right. It is a marathon not a sprint, he keeps saying. I am currently on month 17 of antibiotics that would throw the strongest immune system into spasms. Thank goodness for probiotics!
The challenges have been many, but I have good and bad days now. This is an improvement over nothing but bad days. I still write, I garden, and if anything it has made me more introspective. Before it was easy to just do and not think, but now I have to decide what I can afford when it comes to energy expenditures. I realize that I have to choose what I will do each day based on what I have in my “energy bank account.”
Giving up is not in my vocabulary, but I am thankful that I have such wonderful friends, family and colleagues. Without the support from people who are kind and genuine I would have suffered much more. I spent the first year of my flare trying to pretend that it would just go away. I didn’t want to tell anyone. It is so easy for us to judge one another, and I didn’t want to seem weak.
So, here it is. I have Chronic Neurological Lyme Disease. I am fighting it every way I can, but some days are better than others.
I am working on a collection of poems that deals with the struggle of chronic illness. It isn’t as dark as it sounds. 😉 My hope is I will have it done by the end of the summer and will be announcing where it will be published. That would be a great end to a beautiful summer.