My Plea

By Christine H.

The purpose is to serve as a plea. This is a plea for someone out there to HEAR, LISTEN, and use this information to ACT. This is the voice of one, the voice for many, the voice of all who are suffering from Mollaret’s Meningitis.

My name is Christine H. I am a 33 year old female with three young children. I am a registered nurse currently working in intensive care. My life was normal and happy. Historically, I was relatively healthy and free from any acute or chronic health care issues. Ironically, I was healthier than I had ever been in my life. I was working out 3-5 days a week at a local gym, and had made many dietary changes leading to significant weight loss. I was more active, and had more energy than I had ever experienced. One weekend, everything changed.

I believe life stress brought on this illness. I finished a shift at work feeling rough. I had pain in my shoulders, neck and head. I attributed this to the physical requirements of lifting patients. Later that night, I woke with the most severe pain in my neck and head I had ever felt in my life. It was a pulsating pain with pressure in my eyes. The pain intensified with any movement or position changes. I told myself, “This must be what a migraine feels like.” For three days I suffered hoping the pain would resolve. When it didn’t, and I could no longer take the pain, I reported to the emergency department. A lumber puncture confirmed I had viral meningitis. Fast forward, my spinal fluid tested positive for HSV II. I had been, and remain, an asymptomatic carrier to the viral disease, apart from its manifestations of recurrent meningitis.

Characteristically, it acts just as HSV II does, but without genital lesions. I have suffered from 5 bouts in 2 years requiring hospitalizations, and innumerous “mini flares” in between. I’m more often than not in a state of feeling viral. I run low grade temperatures off and on, I am nauseated, motion sick, off balance and have short term memory impairment. My attention span is shortened. I am in pain, and any activity as simple as housekeeping makes this worse. I am cold always, and the list goes on. The worst of it; my quality of life has changed entirely. Life is not the same. I struggle for energy to make it through the day. It takes any and all energy reserve to work to support my children. I am depleted. There is rarely any energy left for anything extra. I’m pushing when I should rest because I have to, and I will continue to do so until I no longer can. I have dedicated my life to my family, and to caring for others in their deepest time of need. Even in those times when I feel any moment I could collapse at their bedside.

I live in a rural area with limited access to healthcare, but inversely, I fear not enough is known about this disease either way regardless of my location. I wish for a Dr. to push the envelope. Push past the small amount of literature out there, stop with the “self limiting” nonsense. Help me. Help us. Instead of solely existing, I wish to live once again. I am lost and I don’t know what to do.