Living with CFIDS. Wonder Woman.

Wonder Woman

It came naturally to choose Wonder Woman as a theme for the 1st Blog posted on VLG on Valcyte.   Helplessly watching my son Blake being bedridden for 5 years through the prime of his youth, taking 20+ specialists to diagnose him. Then, the realization and confirmation that I myself have been diagnosed with the same insidious disease. It takes a Super Hero to deal with CFIDS and the effects of having HHV-6A, EBV and CMV Viruses. The debilitating chronic fatigue causes decrease in quality of life and disability in many cases. The headaches, weakness and the entire other plethora of symptoms make CFIDS  complicated and hard to diagnose. It is no wonder that it is such a difficult monster to diagnose and treat. Hence, enters Wonder Woman. Be it the mother, grandmother, sister, wife, cousin, girlfriend, fiancé or friend; if you are supporting a loved one with CFIDS, HHV-6A or EBV you are a super hero.

 It takes super hero strength for the patient to go through the trials and tribulations of this nightmare. Being on both sides of the fence (both patient and caregiver), I realize it takes hero strength to support the patient as well as being the patient. Thus, I honor all of you out there who are care taking and/or supporting the patient. When ones’ life changes drastically due to illness, very few “outsiders” can recognize and support the emotional and physical journey the patient goes through while his/her life slips into the hurricane path.

 HHV-6A affects the mind as well as the body. With its’ toehold stemming in the brain, cognitive decline ensues. One becomes unable to focus or concentrate and can be quick to anger. Blake was the most amiable boy and young man, until afflicted with this disease. Dark moods and thoughts and a temper reared its’ head, eventually leading to self-destructive behavior. What is amazing for me to see, is an extremely athletic young man who played 5 sports first string and who LIVED to go to school and learn, then become a distant, reclusive person who could not gather the strength to get out of bed for months at a time. What kind of disease could produce such a broad range of symptoms crossing the barrier from physical to psychological?

 All diseases have their titles and their impacts, thus our modern medical community and society have placed a “rating” on each disease. CFIDS have been given a poor rating up until now. Very little was known about these diseases hence they were discounted greatly. Yet, with the new Viral Infection links (HHV-6A, EBV, CMV) to CFIDS, Dr. Montoya at Stanford University and all other ensuing studies using antivirals to fight these infections are making great strides in the goal of treating CFIDS.

  I could be angry when I think of what some of the doctors/specialists/schools/teachers/”outsiders” said to us about Blake and me. The looks, innuendos and outright language saying “get over it, get out of bed, take an anti-depressant and move on with your life. Get counseling, it’s just that you are stressed, nothing is medically wrong with you.” However, I smile when I recount the journey.

I smile because I knew inside and never stopped fighting for my now 21-year-old son. I smile because I am an athletic female that could out swim (backstroke), out ride (horses), out sail, out fly and out drive (race cars) any of those “people” who advised me “to get over it”.  I smile because I know Blake could out run them (he is fast), out Jump them (center in basketball), out pitch them, out snow board them and they would definitely pick him first for their football team (wide receiver).  I also smile because CFIDS, HHV-6A and EBV are on the forefront of modern medicine.

As patients, we are about to provide extensive case studies to help in the cure of  multiple “fashionable” diseases such as MS, Lyme and Autism. We are on the verge of having groundbreaking insight that viral and bacterial  infections may be a crucial link to the cause of many diseases.

 You see, we truly are super heroes. Whether you are male or female, or whichever super hero you identify with, I commend you for supporting or being the patient who lives with CFS/CFIDS.

Julia Hugo Rachel

Very Lucky Girl on Valcyte

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