Humans of ME/CFS
Solve ME/CFS Initiative is asking people like me to share our stories, specifically the way this disease has impacted our lives. What can I say about the impact besides utter destruction? Truly, this is a life-altering, utterly disabling disease. It has changed every single little thing about my life.
You know that annoying woman who seems to have it all together? The one who spins a million plates and never lets one drop? That used to be me. In our family, I did all of the yard work, housekeeping, cooking, sewing, homeschooling one child, helping with the other kids’ classes in school, leading mom's groups, leading bible studies, hosting dinner with friends weekly, and planning parties for people on the side. I. Did. It. All. I woke up early and I was the last to bed. I was driven and focused, and I thrived on accomplishments.
Fast forward to week 36 of pregnancy with my youngest child, and all the alarm bells began to sound. A regular blood panel from my OB doc showed that all sorts of things had suddenly gone haywire. I was sent to a high risk clinic where I had a several hours-long ultrasound done of the baby and intermittent phone calls between my doctor and other specialists. Thankfully, my baby was fine, and I delivered a happy and healthy little girl, but I was sick. Many, I mean MANY, different doctors and countless blood panels later, I was finally diagnosed with ME/CFS.
So now, I am no longer spinning plates. I am sleeping. I am sleeping 12 hours a night. I wake up in the morning and get my little kids to school, and then I sleep some more. I wake up again, eat some food, take a shower, get dressed, and then I lie down on the hallway floor to recover from the hard work of showering. Then I might sit up and read for a bit before I need to pick my kids up from school. After they are home from school, I make them a snack, lie down on the floor again, and ask them about their day. If it is a good day, I can stay with them and be awake. If it is a bad day, I have to kiss their little heads and then put myself back to bed. I wait for my husband to come home, make dinner, help with homework, and do some house work. He comes home every night, kisses me, and tells me how much he loves me; he's amazing like that. He has picked up the slack and does not complain. But, my life right now just plain sucks. I am barely keeping my head above water. My kids need their mom, and my husband needs his companion back. Please cure ME/CFS.