I Used To Fight Fires, Now I Fight M.E.
I am fighting like a warrior. Here is my story....
I escaped. My children and I arrived on the Eastern Shore of Virginia in the summer of 2005 during the start of an ugly divorce. My parents lived there and, with five children ages 6 to 16, I needed help. So, for the next couple of years, I tried to rebuild my life and recreate who I was. I found a few good jobs, but I needed a career.
One evening, I was sitting in the fee booth of the wildlife refuge, where I worked part time, thumbing through the local newspaper between customers. I was always looking in the ads for something I could do to support myself and my children. Nothing again, except, what I did see…changed my life.
There was a small paragraph announcing the start of a new Emergency Medical Technician (EMT) class being held at the local fire department. The fee was $20. I could afford that, and I have always been interested in helping people and learning what to do in an emergency. So, at least I knew it would be interesting.
All of the students in the class were volunteers somewhere. Each one of them proudly wore their station’s tee shirts or ball caps. So, every Sunday, all day, and Wednesday evening I studied, listened, and practiced all the elements there are to becoming an EMT.
One Sunday afternoon, I approached one of my instructors and told her how much I was enjoying the class and commented that everyone, except me, was a volunteer. She was a paid medic, so I asked her how I could become an EMT and get paid. She turned to her computer and printed the application form for the position of a Recruit Fire Medic for our county’s Department of Public Safety. My first day on the job was October 15, 2007.
Becoming the first Recruit Fire Medic for the county was a big accomplishment. However, I had many more things to do. So, from 2007 to 2015; I attended many classes, most were hours away. In eight years, I became a Fire Captain, Fire Officer III, Paramedic, Fire Academy Instructor and EMT Instructor. In the summer of 2015, I was teaching the Department’s first in-house EMT class when the room started to spin, I saw black closing in around my field of vision, and I thought I would pass out. I stopped teaching and told the class it was break time. I don’t think they noticed. The dizziness was gone when the break was over, so class and I continued. Driving to the firehouse I was assigned to that night, I felt the first, of many, random fevers coming over me.
During the fall of 2015, I was busy, but couldn’t be happier with my duties as Fire Medic Captain and EMT instructor. In addition, I was working as a part time 911 dispatcher; a job I enjoyed just as much. Things were going great since I first arrived on the shore. I barely noticed the back to back to back upper respiratory illnesses I had.
March, 2016: I finally felt better from the bad head and chest cold I had for months - just in time for my trip to England. On the return flight, as the airplane was descending, I had the worst head pain I have ever had in my life. That turned out to be the first migraine.
Back from my trip, I couldn’t shake that head pain, it would wax and wane, but it didn’t relent for two months. Along with the migraine, I was feeling extreme exhaustion. Next came body pain. It felt as if I had fallen from a moving car. Where were the bruises that should be there where I hurt? I went to my primary care physician. After blood work showing I had a positive result for antinuclear antibodies (ANA), I was sent to a rheumatologist. After, I went through lots and lots of tests, specialists’ referrals and blood draws, and an MRI.
With all the results, every doctor would look at me and say something like, “I’m sorry, there is nothing I can do.” I asked about the I positive results for antinuclear antibodies. I would get in reply from several doctors; “Yes, but that might not mean anything.” Then why run the test? I wondered. One doctor looked at me and saw tears streaming down my face. “I’m sorry, I will give you a referral to the neurologist, maybe he can help.”
I was off of work a lot while doctors were trying to figure out what was wrong with me. I needed someone to help me get back to work. I couldn’t stay awake more than 3 hours that first summer, I couldn’t stand to see light, or hear anything. When it was quiet and dark, the room would spin. I would sleep for 12 hours and wake up more tired than I was when I went to sleep. I kept telling the doctors that something major had happened to me, and they needed to find out what it was. Next stop was neurology, then, a referral to endocrinology.
I was ultimately diagnosed with Myalgic Encephalomyelitis (M.E.) (also referred to as ‘chronic fatigue syndrome’) and fibromyalgia. And an incidental benign tumor was found to be in my brain. I don’t know where that chapter was during paramedic school, but, I had never heard of myalgic- what? And fibromyalgia? Is that even real? “We have run all the tests. Our conclusion is that you have... myalgic bla bla bla chronic yadda yadda.” I went to another doctor for another opinion. Still nothing more concrete.
So, where do I go from here? Find a support group? I don’t think so. “There is no cure, you just have to manage the symptoms”. My neurologist told me to; “...go ahead and walk as far as you want.” “It will do you good,” he said. Finally! Yes! I went home and grabbed my girls and said come on we are going for a walk. No matter how much it hurt, I went on a four-mile walk, on the beach. Generally, people suffering from M.E. should start walking maybe 4 minutes, not 4 miles. The doctor said it would help. Later that night, and for many weeks after, I felt as though I was literally dying.
After all the tests and referrals, the pain, the fatigue, the inability to think clearly… it soon became clear; I could no longer continue my duties as a Fire Medic Captain. My rheumatologist was very supportive but offered no hope that this illness would go away anytime soon. In fact, he told me that I was facing a permanent condition. He said there is no cure and finding the right medication to treat my symptoms is the goal for now. He told me that patients with this disease as active as it was in my case, usually have to depend on someone in their life to help take care of them; financially and emotionally.
The career I worked so hard to build was gone. The person I created I could no longer be. I was devastated. I still had more to do. My life, as I knew it, was over. October 15, 2016 was my official termination date at the Department of Public Safety. I would no longer be the captain of C shift, a firefighter, a paramedic, an EMT instructor, or a fire academy instructor. This was more than crushing to me. Walking down the hall leading to the office of the Director of Public Safety, my heart was pounding rapidly. I knew this news I had to pass along to him would put the department in a difficult staffing strain. I didn’t look forward to telling him I could no longer work. I don’t remember exactly what I said, but there were tears… really ugly tears. I hated to cry in front of him, I only wanted to show him how strong and determined I was.
For the past 9 years, I was strong and determined. I felt like I was showing him that I was weak and vulnerable. I think he understood that my entire life was being turned upside down. He definitely knew how hard I worked. At some point he made a joke that made me laugh and I was able to compose myself. He was always good at making people feel comfortable in uncomfortable situations. By the time my Battalion Chief arrived at the Director’s office, I was able to talk without falling to pieces. I looked up to the both of them very much and I hated that I could no longer work for them and perform my duties at Public Safety.
I could, however, continue my job at the 911 center. For 6 months, I worked full time there and added a part-time dispatcher job at the Chincoteague Police Department. I couldn’t work a physical job but I could certainly do this type of job, my mind worked fine - until it didn’t.
Losing my mental capacity is one of the hardest parts of this disease for me. As time went on, my concentration was harder to keep. My thoughts would escape me halfway through, I couldn’t think of words, and sometimes, I couldn’t say words I wanted to say. I became very frustrated with mistakes I was making. The fevers and vertigo were back and driving to and from work was getting dangerous. Swerving at the last minute before going off of the road, near misses with oncoming traffic, breaking too late, and blurry vision.
No one knew how much I was struggling. I didn’t even know how much I was struggling. The pain was worse and the medications were still not working. After being written up at work and almost landing my car in a ditch (again), I realized I was finished. I could no longer work at all. A new fight was to begin.
June 1, 2017 is my official retirement date. It took a year and 10 months to be retired on disability. Being home every day, I thought, ok, I can beat this. However; this disease isn’t that cooperative. The first year not working, I didn’t get better, in fact, I got worse. Medications were switched, added or taken away, I was no longer driving and my bed became where I spent most of my time. Pain, medications, sleep, wake, repeat.
Today, I am recreating myself, yet again. I did it before, and I can do it again. I don’t want to be this sick person. My medications are helping, I am driving short distances, and rest when I need to. I can comprehend more than a paragraph now. I may improve still; I may get worse. I understand my illness better, and realize some days I may have to choose between things like folding laundry or taking a shower. I try to ‘listen to my body’ more. I am one of the missing. I am missing from my life. I will continue to fight.
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) affects 15-30 million people worldwide. ME/CFS cause patients to go missing – missing from work, social events, family gatherings, their lives. Many people with ME have been sick many years longer than I. Some cannot speak, walk or eat on their own. ME/CFS Is a devastating disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. ME/CFS patients, more often that not, have comorbidities. Mine are chronic migraines, and fibromyalgia.
The Centers for Disease Control and Prevention describe this illness as “a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.”
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