I've lived with Chronic Fatigue Syndrome in one form or another for almost 20 years. I have had times when I was completely non-functional. I couldn't think a complete thought. I couldn't walk down the hall. I couldn't count my money or write a grocery list.
Listening to anyone talk would put me to bed, vibrating and with a kaleidoscope brain. I was a vegetable, with no grasp of what was going on around me, or who I was back when I was still me.
But I have been recovering from the worst of CFS for the past four years and the more I recover, the better my body and brain work and the more I remember about me, about who I was. The old me, the pre-CFS me.
Here are some of the things that I'd forgotten for years at a time because of Chronic Fatigue Syndrome.
1) I had forgotten what it was like to get in the car and drive to the grocery store.
When I was leaden and seasick, I could no more go to the grocery store than fly to the moon. Could not drive. Could not steer a shopping cart. Could not choose things from a shelf. Could not handle money or speak to the clerk.
2) I had forgotten how much I enjoyed chatting with the lady at the library.
At my worst, I could not navigate through the doors of the library. I couldn't read the titles without feeling like I might collapse. My arms and hands were too sore to carry books.
The library is a dozen blocks from my house. Might as well have been across a chasm. A chasm blasted by the dynamite of Chronic Fatigue Syndrome.
3) I had forgotten what it was like to go to the bank and do my own banking.
When I couldn't keep numbers in my head, and couldn't count I was fortunate to have a husband who was willing to do everything for me. The tellers might as well have been speaking a foreign language. Chronic Fatigue Syndrome garbled and distorted everything I heard.
4) I had forgotten how nice it is to dress up just for the heck of it.
I lived in an old housecoat for months at a time. Eventually I graduated to "real" clothes, but I kept it basic for a long time.
Now I am liable to put on some makeup, and wear a pair of hoop earrings. Who knows, I might even work my way up to wearing the high heeled boots languishing in my closet.
5) I had forgotten what a clear mind felt like.
Life was so basic for such a long time. Vibrating, head fog. Must be time to eat something. Cold. Put on a sweater. Or an extra blanket on the bed. Time to sleep. Wake up. Wish I could just go back to sleep and skip the day's CFS symptoms and queasiness. Often I did that.
6) I had forgotten that I used to manage a website and correspond with my writers.
Reminders of this pre-CFS period of my life were like looking at someone else's old photographs. Could that have been me? Couldn't imagine being able to juggle and soar as I used to do with such ease. But it is very slowly coming back to me.
7) I had forgotten what it felt like to be able to write all day long.
I used to write a couple of articles a day for my website and a couple of newsletters I also helped to edit. I kept a couple of different kinds of journals every day.
It made me feel alive in a way that has been out of reach for years. But it is just there, at my fingertips, once again. Me, being me again.
8) I had forgotten how wonderful it is to make my own decisions and carry them out.
That was an old memory, one which I am recently dusting off and becoming familiar with once more. What an amazing thing to be able to prefer, to choose, and to act. How I've missed it! And I am enjoying the baby steps I'm taking in that direction now.
9) I had forgotten what it's like to guide and guard my family.
Before I got kicked in the teeth by CFS, I was very involved with my husband and children. We homeschooled our five kids and made them the central priority of our lives.
And then I just kind of ... disappeared. Our kids have mostly spent their teens without me as an active presence in their lives. Those years can't be retrieved, but I am back now.
10) I had forgotten how to hope for a better future.
When all I could do was white-knuckle it from one day to the next, when I was limp and bed-bound, and could only watch my days slide away like beads from a broken necklace, hope was an alien concept. It was a bad joke, and the joke was on me.
But as I have been recovering, I have been able to grasp the handle on hope that had previously been out of my reach.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.