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Nita’s Fight Like a Girl Story (Myalgic Encephalomyolitis aka ME)

Nita's Story (Breast Cancer) LRMy name is Nita. Until 2003, I was a very busy legal assistant in Texas, a guardian ad litem for FOCAS (Foster Children’s Advocate Services), a sunday school teacher in our church’s Youth Department for 12 years. I was in a BUNCO club in my neighborhood and ran a successful small embroidery business out of my home. I am married to a retired police detective. I have two grown children and 5 wonderful grandchildren. The law firm I worked for at the time allowed a dangerous situation to continue for six months from the date of my first report of the situation. Once action was finally taken, my health slowly began to decline.

I have had every (autoimmune) diagnosis in the book since that time. In April 2011, my P.C. sent me to a specialist. Four days before my first appointment with the new doctor, I began to collapse. Since my diagnosis mid-May 2011, most of what I know about Myalgic Encephalomyolitis, HHV6 and Lime Disease has come from my own research. Doctors don’t know much and patients know even less. Most days I feel like a walking dead person. When we say “fatigue” we are not talking about having a hard day at work, or busy trip to the mall. The best way I can describe the kind of exhaustion we are talking about is being “tired to the bone”. When I collapse, I have not fainted. It is like everything is fine, then suddenly the urgent thought enters your head that might sound like “OMG, I’m going down”.

One morning before I quit working, I got up, dressed, got my purse and was ready to get in the car. It was approximately 7:45 a.m. when suddenly, I had no choice but to lie back down. I woke-up at 11:00 a.m. with my purse still on my arm, boots still on my feet. Another time, about halfway to the law office where I worked in Downtown Dallas, Texas, I pulled into a McDonald’s parking lot and took a 30 minute nap. Two or three years after leaving my legal career, my son asked me to help out at his second Chiropractic office. I really wanted to be there for my son, so I agreed and I really felt I was up to it. The drive to the new office was a pleasant 10 mile trip from our new home in the forest to a nearby small town. I only worked from 8:30 to noon. Many times, about halfway home, I would find myself praying that I would make it home before having to pull over on the side of the 2-lane country road to take a nap.

Because of my illness, I wanted to move from our home in the city to a more quiet and simple life in the middle of the forest with no nearby neighbors. I really thought I was going to die and the home God lead us to was the perfect place for the new home that I called my ”hospice”. On the day we closed on the sale of our house in the city, we were asked to be out of the house for awhile to give the new buyer and his realtor a chance to do a walk-thru of the house before signing the papers. After waiting a couple of hours in the car outside the house, I got out, walked through the back door and, without stopping, I announced to the two strange men in my kitchen that they were welcome to continue with their walk-thru, but it was urgent that I go to bed. I couldn’t even tell you what the two gentlemen looked like since I didn’t even take the time to stop to address them. I had merely made my announcement as I continued to my bedroom. I woke up 12 hours later and realized I hadn’t even bothered to lock the bedroom door. I tell you this story because it is a perfect visual of just how urgent that “OMG, I’m going down!” feeling is. When it happens, there had better be a bed, sofa or other safe place to fall within 3 feet of me because I have no choice but to collapse.

Of course, fatigue is only ONE aspect of ME. I have chosen to focus on the fatigue in order to give the reader a clear picture of what we are talking about when we say “fatigue”. Using “fatigue” to describe what the ME sufferer experiences is like calling the Pacific Ocean a pond.  “Fatigue” is the only word that comes close. There is no word in the English language that adequately describes it. I have collapsed in the grocery store, a gas station/market, a Chili’s restaurant, twice in the yard, in the floor of my bedroom — 2 feet from my bed, singing a duet on the stage at church. Once, it took me 20 minutes to muster-up the energy to get out of the bathtub after preparing snacks for a card game with neighbors. While I was busy trying to pull myself up the 2 feet to step over the side of the tub, our guests had arrived and my husband was 3 rooms away entertaining them. I could not even muster-up enough energy to call to him in a voice that could be heard. In fact, when I would collapse, the message I would try to communicate to those around me was, “Just give me a minute, I’ll be okay”. What they heard was ”Shwshwshwshwshwsh.”

On the day I collapsed in the grocery store, I felt strong – so strong that I had driven myself there. However, because the collapsing events were happening every few days, I put my most recent labwork and diagnosis in my bra before leaving home with a note to NOT call an ambulance. I knew if I had been transported to the local hospital, they would just run a dozen expensive tests and with all the test results all coming back ”normal” would ultimately send me home.

I hope my descriptive rendition of this debilitating condition has helped you to visualize how it debilitates its victims on a day-to-day basis. For a real visual, the best I have found is Clip #2 found at http://www.nzonscreen.com/title/open-door-me-2008.

Thank you for reading my story, which, by the way, took me approximately 6 hours to write due to numerous delays due to loss of train of thought and lengthy pauses trying to to remember words.

Nita
Texas
Submitted 10-20-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. I’ve been watching for a story like yours. So many are cancer, which I can’t personally relate to. I felt maybe I didn’t belong here… But you wrote my story for me, part of it, anyway. I look fine, so people think I must be. I must have decided to just sit on my butt and do nothing at the age of 40 (now 45). I once pulled over on a highway, got out of the driver’s seat, pulled the back door open and told my sons that if they wanted to get home, one was going to have to drive because I was going to fall asleep. Now. I have learned to tell my doctors that I “have no energy” instead of “weak” because they knew there was nothing wrong with my muscles.. I have a Mitochondrial disease, maybe ME is under that umbrella, don’t remember (imagine that!) I watched a movie yesterday called “The Wedding Gift”. It’s a British film from the early 90’s. It’s a tearjerker. A true story of a woman in the early 80’s who had what I think sounds like ME, but was diagnosed with Chronic Fatigue and an autoimmune disorder. After years of being told she suffered from things such as “hysteria”. A good movie. Her husband wrote several books about her. Well, thank you for taking the time to tell your story. You’re not alone, although I have a hard time remembering that myself. It’s just so isolating when you’re too exhausted to leave the house. The internet is my social life…….annemarie

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