I've suffered many areas of loss because of Chronic Fatigue Syndrome. I'm one of the lucky ones who has been recovering, but it's anyone's guess as to how much of a life I'll be able to reclaim.
Here are some of the things I've lost to CFS.
1) Years of my kids' childhoods
This doesn't just affect me. This has short-changed my kids for years on end. I didn't go to soccer games. Couldn't take them places.
Never saw one of my daughter's homes two hours away, in the entire year she lived there. I couldn't go to my daughter's or daughter-in-law's college graduations. Managed to attend both of my kids' weddings but it was touch and go, and I had a CFS crash after each of them.
2) Special occasions
Family reunions, dinners out, parties, these were history for me. I hated to miss them. And felt sad that many folks must have assumed I just wasn't interested, because they didn't understand just how sick I was.
3) Church family
I hung on to my church long after I should have been hanging onto the sides of my bed. I'd gradually dropped out of every department as I got sicker, and with each resignation I mourned. Eventually I had to quit going at all.
A few people sent cards at first. Then silence. Big, echoing, heart-breaking silence. For me, the Church Family proved to be a myth, like the unicorn.
4) Homeschool support
My husband and I led a homeschool support group before CFS disabled me. I was grief-stricken when, with one or two notable exceptions, the people I'd been devoted to lost interest in me. Quickly.
We'd been closely involved with 30 families. And now, we were alone.
5) My website, forums and search engine
My husband and I ran a website called Ncubator.com Christian Resource Directory in another life. We had 40 writers, forums and our own search engine. We got emails from around the world. Eventually, though, I was vibrating too violently and my CFS brain was too fractured and we had to shut everything down.
It's been a pleasure to again be in contact with friends we met through Ncubator.com, the few stubborn sweethearts who wouldn't let me go, once I could read and write again.
6) Any career advancement
Before I got too sick with Chronic Fatigue Syndrome, I'd done some work proofreading and editing, wrote book reviews, through my connections with our website Ncubator.com. But when I was no longer able to read, or write ... as you might figure, that all fell apart.
7) Any contact within my town
I'd been pretty busy with my kids, my homeschool group, my church and my website before getting too sick to function. When those things disappeared, I realized I had no connection with my town.
I bumped into an acquaintance from my healthy days recently. He said something about, having lived here for so long, I must know everybody.
You'd be surprised.
8) Any trust in conventional medicine
I got no help from the conventional medical community. My regular doctor had no idea what might help me and seemed disinterested, even rude. The specialists were kind enough but had no suggestions.
These past three years, the only help I ever got came from my naturopath Dr. Kelly Upcott.
9) Any sense of security in my government
People with Chronic Fatigue Syndrome have a tendency to fall through the cracks. I was sick and disabled and found no help from my government and its so-called social safety net.
This has imprinted itself on me for life.
10) Any sense of belonging
Being chronically ill with a disease people don't understand, that is never in the news and rarely in any other media, that has had no champions outside of the CFS community ... this estrangement has lifted us up and dropped us off outside of society as we knew it.
You would not recognize the world we see. Totally apart from the neurological shaking that our brains experience, the social isolation causes a massive shift in our perception.
In virtually every area of life, we are now on the outside. We are forgotten.
We see the rest of the world from a distance — if we are fortunate enough (i.e., if we are not homeless in a forest or desert, or trapped in our beds) to be able to see the rest of the world at all.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.