by Amy J. Mooney
My daughter is 13 years old and has been home bound for almost 4 years with Myalgic Encephalomyelitis.
She is in bed 99% of her day with fatigue and excruciating pain. She can’t nap and doesn’t sleep.
Because of how weak she is, all of her meals must be eaten in bed.
In fact, every aspect of my daughter’s life has been negatively altered.
Myalgic Encephalomyelitis.
my = muscle; algic = pain; encephalo = brain; myel =spinal cord; itis = inflammation. ‘ME’ for short.
ME is also known by the trivializing name Chronic Fatigue Syndrome (or CFS). But chronic fatigue is just one of the many symptoms of this debilitating condition. Myalgic Encephalomyelitis is a multi system disease of unknown origin that can be triggered by an infection, surgery, illness, accident, or stressor.
There are enormous stigmas with this disease:
- patients with ME do not appear sick to the outside world and
- the common name, Chronic Fatigue Syndrome, trivializes the symptoms. My daughter is not just tired. This is a disease of cellular energy production; she is sick down to her very cells.
So picture yourself or your child/grandchild/spouse/friend feeling like you just ran a marathon and then were hit by a bus. Your brain is so foggy it is the functional equivalent of stage 3 Alzheimer’s. Your body aches like you have the flu, every day for the rest of your life. Every sound pierces, sunlight hurts. Imagine you feel this way and there is nothing you can do about it. There are no FDA approved treatments and very few people are trying to find answers with very little money. That is how my daughter feels every minute of every day without an end in sight.
My daughter has plans. She has dreams of her life without illness.
“If you could be well tomorrow, what would you do?” I asked. “I would leap out of bed and be the first one at school. And I would stay there for the entire day!” she replied.
The reality is that because she is so sick most of her day is spent in a darkened bedroom with very limited sound and movement. Socializing is a luxury. She has a constant headache, body aches, brain fog, and the constant companion- fatigue. These symptoms worsen by the minute when she gives any physical, cognitive or emotional effort.
Without any reason or cause, 6 months ago my daughter’s health changed from moderate to severe ME; all of her ME symptoms intensified (referred to as a “ME crash”). She is not longer able to leave her bed or perform any of her daily activities without assistance. For 3 years prior to this severe crash, she received all of her education at home from a tutor; an hour most mornings but never finishing her lessons without collapsing in bed, crying. She cocoons herself in her blankets to protect her fragile neurological system from the hyper-responsive reactions she has to any stimulation. This is the new reality for our child and our family.
What could have turned my powerhouse of a daughter into a weak and bedridden child? We figured finding answers would not be hard; after all we live in a major metropolitan area with many top ranking medical facilities. We started out with getting her evaluated at major medical centers and in multiple departments. Each of department searched for a cause and ruled out countless conditions. One doctor told us, “Send her back to school. Kids with cancer still get themselves to school.”
The search for a correct diagnosis was an excruciating process and financially crippling but getting the correct name for this monster gave it an identity. Another doctor told me “it doesn’t matter what we call the condition, there’s no treatment or cure. So the name doesn’t matter.” I disagree.
Knowing the name of the disease matters and having a path to treatment is vital. My focus now is to protect and nurture my daughter’s fragile body and to fight for ME’s recognition, funding, and treatments.