Humans of ME/CFS
I really wanted a cup of tea this afternoon. I made the tea and brought it to the living room. I had to lie down and rest. Two hours later, when I was finally able to sit up, the tea was cold. I did not have the energy to get up and make another cup so I drank the cold tea because I was thirsty and alone. That pretty much sums up ME/CFS for me. ME/CFS has stolen my life. I am stuck in a body that really hurts, does not work for me, and sometimes I am just too fogged in to even care. Fifteen years ago I was an active wife, mother of two boys, event promoter, ice skating and hockey coach, and busy volunteer at church and school. ME/CFS hit me like a wicked flu with a three-inch long line of nerves firing at full strength down the left side at the back of my throat. It was pure pain. I felt like I had been hit by a Mack truck and I was encased in a leaded suit of armor. My arms and legs felt too heavy to move and I ached all over. After two months in bed, I was finally able to function a bit with the help of some meds. I have found that the keys to living with ME/CFS are to let go of things I cannot do and focus on the positives. Pacing and distraction are great pain relievers, even if only for a few minutes. My cats take such good care of me. Now my boys are wonderful young men, successfully living on their own. I do occasionally volunteer to get out of the house and be with people. I help my dad and brothers and in the summer, I have a small garden. When I go out I look fine; nobody understands because they never see me when it is bad. My husband and sons are the only people who understand what I have been through and I love them so much! I have been on disability for years. My husband still works because the meds cost a fortune even though we have insurance. I wonder: if there ever is an effective treatment for ME/CFS, will I be able to afford it?