Tomorrow is the beginning of my new life. I truly feel that my life will never be the same. But for the first time in three years, I feel that is a good thing.
It’s been a tough road, doubting myself, doubting the experts and doubting those who love me…to not knowing who to doubt. In the end, deep inside ourselves we always know the truth. Just sometimes it takes some really rough roads to learn that and come to love and trust that person deep inside ourselves.
They say Chronic Lyme Disease is the lonely disease and I could not think of a better description. It becomes so lonely you are not even there for yourself. You don’t know yourself any longer, you don’t trust yourself and you soon dislike yourself very much. You aren’t who you thought you were and you continually let yourself down.
After three years of trying to convince doctors there was something seriously wrong with myself and convince myself there was nothing wrong with me, it all fell apart. I finally gave in to the fact that I had no control over my life, I had no control over my body and no one could help me. A lot of ideas enter your mind at this point, but the thought of a finding a solution was no longer one of them.
I count myself very blessed at this point, when I travelled to a meeting with some colleagues across the province. I had to park halfway to the meeting to sleep. I had to use a gps to find my way although I travelled to the same meeting place for over a decade. I had to take pain pills from sitting too long and was too ill to go to work the next day. I wondered if it was worth it because I couldn’t recall much from the meeting except for one minor detail mentioned in passing.
A colleague not in attendance had travelled to the United States to be treated for Lyme and she had not even seen a tick. This had peaked my interest because I had been bitten three years earlier but thought I had removed it before the was any cause for concern. I had never tested positive for Lyme, so surely that could not be causing all the crazy symptoms I had experienced over the last three years. That was until she mentioned a few: numbness, loss of feeling throughout the body, significant memory loss, extreme fatigue, facial paralysis, chronic muscle and joint pain. I thought to myself, how I understood Lyme was flu like symptoms. I quickly learned that it was very different from Chronic Lyme that an individual might deal with over years. It attacks every system and part of your body.
By the end, I couldn’t wear jeans because my nerves were too sensitive. By the time I picked up a pen to write something down, I couldn’t remember what I had to write. I couldn’t finish a sentence without forgetting what I had to say. And when I did say something, what came out was not what I intended. I slept all of the time and had no desire to do any exercise. I had come up with an excuse for all 50 plus symptoms I had not realizing how much I had declined and accepted as normal.
I had been experiencing muscle and joint pain for years, but two years prior my breathing got so bad that it started to restrict my running. I had every pulmonary tests known to man and was “incredibly healthy” every specialist told me. This progressed and I went from completing a half ironman to not being able to walk 10 minutes on my treadmill in one and a half years. Yet, no one could find a thing wrong with me.
The spring before my anxiety had skyrocketed. I am certainly not a laid back person, but I was so riddled with anxiety that it was consuming my everyday life and I started to experience such intense chest pains that my doctor sent me to emergency and booked a cardiologist right away. After months of tests, I was once again told I was one of his healthiest patients. I walked out of his office barely able to get a full breath and holding my chest because it felt like a strap was being pulled tighter and tighter around my chest with every step. But I was healthy!
In the fall of 2015 my Doctor said, ” I don’t know what else to do for you”. So it was decided I would take the fall/winter and take really good care of myself, not push myself and work toward recovery and that is when the rapid decline started to occur. The less I did the less I could do. The more i took care of myself, the worse I got. I simply didn’t have anywhere to turn.
The loneliest part of Lyme I think comes from the contrast of what is going on inside to what it looks like from the outside. To the general person, I looked normal most time. I knew my face was swollen and not myself, but it looked pretty normal to my friends. No one could see my pain and no one knew how little exercise I was able to do. That was just too embarrassing to admit. I lost feeling in my foot from my new boots, my hands ached because of the way I hld my steering wheel, I couldn’t type properly because I was rushing, my memory was bad because I was too busy, I tried to do too much so I was tired all the time, I wore track pants because I like wearing track pants, my left side was weak because I had not been lifting weights, and on and on and on it went. I had a reason for everything and if the doctors didn’t think anything was wrong, why would I. I just needed to change my attitude and I would recover. And all the time most people around you think you are doing fine. So when it comes to the time that you have to admit to yourself something is seriously wrong, it’s really tough convincing those around you that there is. Especially Doctors.
ok, so i am starting with your first post and i had no idea Kristy. realized you were fatigued but did not know the pain you are/were in! thanks for your candor and honesty. hoping your insights help others. my gut told me it is a lonely road…did not realize how close to home that thought was. Strength W. Sister