Humans of ME/CFS
I visited San Jose del Cabo, Mexico in September 2015. I started feeling odd during the trip: lack of energy and no desire to really doing anything. My sense of smell was through the roof. I had headaches.
Once we returned home, the headaches continued every day and I continued to have no energy.
After returning to work, I kept going home early because of headaches, sensitivity to light, and having issues looking at my computer screen. This was totally out of character for me. I started to have pressure in my left ear and left jaw as well as nausea. This soon developed into me having the left side of my face being numb and tingly. I felt weak on the left side of my body. I had been to the quick care where I was diagnosed as having Bell’s Palsy.
Then went to the ER, where they admitted me into the ICU and ran pretty much every test under the sun. All the tests came back and I was told I was a healthy 41-year-old. While I’m looking at them saying, “I don’t care what your test says, my body is telling me there is something seriously wrong with me!” They then referred me to a neurologist who was absolutely no help. I went to three different primary care physicians who all had no idea what I had. I wasn’t going to take “we can’t find anything wrong” as an answer. I insisted that the neurologist refer me to the Mayo Clinic in Arizona, where I finally was given a diagnosis: ME/CFS.
Before knowing what was wrong with me, I continued to try and power through each day which caused more and more symptoms to pile on top of each other. Knowing helps with half the battle. At least knowing we can work on self-management.
Finding a physician is a whole other battle. I don’t drive anymore because the vibration of the car wears me down. I can’t go to the movies anymore because the flashing of the film movement on the large screen and the loud sound are too much for my system to process.
My life is completely changed. I live like a hermit because leaving my house takes too much energy, energy I just don’t have. My friends and family say they miss the old me. Hell, I miss the old me too. I use to be referred to as “Firecracker.” I’m just the shell of the firecracker now… No spark, no sizzle, no fun. I just take each day as I can and try to make sure I don’t overspend my energy allowance each day.
We all need help to get us back to the people we once were. The person our family and friends miss. The person we miss.