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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.
http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment6 Comments
Hi Michele,
I've heard good things about each of those doctors.
Thanks for writing, and for the encouragement. And, thanks for posting links to my article on the net. :)
November 3, 2010 - 7:23amThis Comment
Hi Jody,
I enjoyed this article and since I feel many will relate am going to share in on Facebook.
I do think it would be good to add Dr.'s like Laura Black, Charles Lapp, Nancy Klimas, Lucinda Batemen or Dan Peterson to your links. These doctors use both traditional and alternative treatments and are experts in treating the symptoms of ME/CFS/FMS. Though they nor anyone else can actually cure the diseases, they do bring about a better quality of life to those who can travel to be seen by them.
I am glad you are enjoying a better quality of life and hope it continues for you!
I will be posting this on Hunter Hopkins Center Facebook page and a couple support groups. Thank you for your expressions. I am sure many will feel understood reading your list.
November 3, 2010 - 1:23amThis Comment
Thank you for writing. I know what it probably cost you to do so. I know it may have sent you back to bed, or burnt up whatever mental clarity you had before you wrote. I know you may have ended up vibrating, with fractured vision and maybe felt like you might fall over.
I feel your pain. I hope that people you can trust and reasons to hope come your way soon. Lord knows you have been waiting a very long time.
You're in my thoughts tonight.
November 2, 2010 - 8:44pmThis Comment
Thank you for writing this article. So aptly put.
I've been sick with this for fourteen years. Daily nausea, vertigo, exhaustion, pain. (Folks, it isn't just fatigue) Can't drive, homebound for over ten years now. Sometimes so weak I feel like it is just an effort to breathe, sometimes it is an effort to stand and brush my teeth.
I totally relate to what you say, most of all to the loss of trust in medical professionals. Well, there's just a basic loss of trust in life. It is like being a bettle knocked on its back and forgotten as the tide of life rushes by.
The people who have pulled away from me because I am not as much fun now, I understand why but it still hurts. I lost all of my 30's, the most productive/growth intensive part of life for most people.
November 2, 2010 - 8:09pmThis Comment
Anonymous,
I so understand what you're saying.
And those few sweet friends that stay with us are more precious than they can ever know.
October 30, 2010 - 4:41pmThis Comment
This is so true. It has happened to me, too.
Because of my ME/CFS (and other factors as to the college), I have no college class with which I truly belong (even though, by God's grace and with a lot of help and support from faculty, administration, other students, and my family, I eventually finished college during a partial remission--of course bringing on a deep relapse), no church family, no community, etc. And yes, no one would recognize the world or the America we experience.
I have a few sweet friends who make a point of keeping in touch, even though it means they take the initiative to dial the phone almost always.
October 30, 2010 - 4:15pmThis Comment
I too have been suffering with CFS for the past 7 years and can
October 27, 2010 - 2:06amtotally relate to the article points.
Every single one of them!
It could have been written by me.
Except I am not on the road of recovery yet.
It's very powerful to read that someone else has gone through and feels the same way as I do.
It's like they've written the article for me.
This Comment
Hi Anonymous.
I'm sorry to hear you've been sick with this thing too. But I'm glad to know that what I wrote made you feel less alone in it.
Despite the fact that we don't know each other, sharing this illness means we know alot about each other anyway. And that means, I have written this article for you. If you were the only other person to have CFS, this article would be written for you.
October 27, 2010 - 7:30amThis Comment