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I feel like I’ve been climbing a mountain of health challenges all of my life.
Bladder problems as a child, five surgeries on my left foot due to a blood vessel hemangioma, then a below knee amputation of my left leg when I was twenty-three years old. I thought I was done with any major suffering, but I was wrong. Three years later, during a vacation to St. Augustine, FL with my family in the late 1980s, I unknowingly acquired an unidentified virus. On the way home, I started feeling bad and got progressively worse. Three days later, I ended up in the ER with a very high fever and a very enlarged and bleeding colon. I spent a week hospitalized before returning home, but didn’t feel good for a long time. A colonoscopy revealed that an unknown virus had ripped through my intestines.
Later my PCP found large quantities of the Epstein Barr Virus (EBV) in my blood. At age thirty, the EBV virus mysteriously morphed into ME/CFS, a severely debilitating complex chronic disease with no cure or FDA approved treatments. I’ve lived with severe cognitive and physical limitations for thirty years and counting. In 2000 I had three miscarriages and three D&Cs, in 2001 I received an experimental drug called Ampligen, administered through IV, for eight years on and off, in 2002 I was hospitalized for a sodium drop, I had my gallbladder removed in 2003 and a partial hysterectomy in 2010. It has only been God’s grace and strength that has sustained me and a lot of help and support from my husband that has enabled me to persevere.
From an earthly perspective, my continuing battle with ME/CFS has not seemed like the momentary light affliction that Paul speaks about in 2 Corinthians 4:17. I’ve never had a day in thirty years that I could function normally and be symptom free. I’ve cried out to God multiple times for healing, and continue to pray for significant improvement in my health, but no answer. Only silence. It sometimes mystifies me that the Psalms are filled with people who cried out to God in their distress and were healed. Psalm 107 is one of those Psalms. However I know that, compared to eternity, my affliction is momentary and light because eternity will be forever. The average life span is eighty years on earth and goes by very quickly. ME/CFS feels never-ending, always a constant companion in life since age thirty, but I know one that day I will be healed, if not in this life, then in the life to come.
Living with ME/CFS brings many challenges and hardships. It would be easy to be bitter – and many people are with ME/CFS – because we have to miss out on so much of life. We became spectators instead of participants in life when we became ill. ME/CFS is an invisible chronic illness so many of us look normal and that makes it very difficult for people to understand how sick we really are. It’s also very hard trying to explain our cognitive and physical limitations. One of the most difficult things about living with this disease is having to rest before an activity (no matter how small) and then rest again to recover from it. Depending on the size of the activity, it can take one day to a week of resting to recover, sometimes more. Each of my activities has to be spaced out to allow for plenty of recovery time. I’m also rarely able to combine two activities or outings together and that makes life very difficult and back-to-back activities on consecutive days is also not doable. There often isn’t much compassion, support, help and/or understanding from doctors for people who have ME/CFS. The suicide rate is very high with this disease for a lot of reasons.
Weak, Wacky & Weary 