This article is reproduced with kind permission from Dr. Bruce Campbell’s nonprofit CFIDS & Fibromyalgia Self-Help website (www.cfidsselfhelp.org). As Bruce notes, it “is based on a post Catherine sent to fellow members of a Creating Your Plan class.” That's one of Self-Help's five different online discussion courses. You can read about about them all and sign up for the Fall Quarter here (deadline, Sep 5).
* * * *
INSIDE A SELF-HELP CLASS
Now that we've reached the midway mark of class, I thought it good to go back and read everyone's posts so far. What I see is remarkable and exciting: We're all getting better!
Examples of Improvement
Monique, despite "unrelenting fatigue," now listens to "the more subtle" messages from her body when it's time to stop.
Vivian's perseverance with 30-second exercises daily has given her the strength to get dressed and will ultimately enable her to sit up in bed, then stand up from bed. But even if she can't get that far (I believe she will), she's okay with it.
Jordan has stopped looking back at the "old life" (after all, it is OLD) but instead celebrates small wins like getting through a week without a flare and doing radical surgery on her "To Do" lists that leaves her with a comfortable change of pace.
I totally feel the peace inside these posts and at the same time, a rising tide of fighting spirit and ingenuity. And I see extraordinary courage and perseverance in this class.
When I read a post, I want to let that person know the determination, talent and "fight" I detect. Reading your messages gives me hope based on your progress.
Do you all realize how hard these changes are? Instead of being bitter and giving up, we're getting a rare inner strength AND control over our lives AND appreciation for the most important things in life. Woo-hoo!
A New Spontaneity
I've learned so much from you. When Jordan said she used to be a spontaneous person, it helped me let go a little more of that part of me.
A few months ago, my neighbor said how tragic it was that "someone who does vivacious and spontaneous for a living has to be alone all the time." Last week, she said her view has changed. Because I'm still spontaneous, only in smaller windows of time and place.
With pacing, I have time to choose if I want to read, listen to music, call my grandparents, make music by downloading and mixing songs, concoct a recipe in my head and make it over a few days' time, have a picnic in my front yard at sunset, or watch my 7-yr-old neighbor Jelly Bean (her actual name) jump on the trampoline and climb trees while hollering "Miss Catherine, look what I can do!"
This new spontaneous is the result of Adjusted Expectations, an enormous healing strategy for me.
Now that I'm changing my DESIRES - I no longer have the desire to travel at a moment's notice, attend elaborate social events, mow the lawn, or throw a giant dinner party - I'm feeling quite content. Why desire the impossible?
Maybe I'll be able to do those things again one day and the desire will return. Or maybe not because as I reflect on that life, I can honestly say it didn't make me one bit happier than my current life and in fact, wore me down.
I lived in a pressure cooker for so long. Why didn't I see it? Now I enjoy having just one or two friends over and it's much calmer, more meaningful, and - whew! - no pressure.
Using 'Stop & Choose'
So in addition to Adjusted (not necessarily lowered) Expectations, I'm also working hard on the "Stop & Choose" strategy. I swear I've read those three paragraphs on page 61 of Bruce's book (Managing Chronic Fatigue Syndrome and Fibromyalgia) over 100 times. It is SO GOOD. Four months ago, I felt I'd never get it. But I'm getting it.
When faced with a decision, I walk my mind down the trail of consequences and ask if I can accept them. There are many things I've finally eliminated and am still hacking away. Much involves choosing not to do small things proposed by other people.
Like today, a friend said she wants to drop off some homegrown vegetables (yea!), but really wants me to be up for a long chat because she's lonely. (Paradoxically, she is internationally known in her field, with funds to travel any and everywhere she wants.) I've known her for many years and am finally learning to say no.
I told her I'd put a cooler on the front porch for the produce because I'd be resting. Now it becomes her decision whether she's really coming over to be generous to a sick girl, or to wear me out emotionally.
I used to fall for her line that "There's just nobody who understands me like you." But now I see that setting boundaries helps HER as much as me. She needs to work on developing her own relationships.
Really getting into a daily, safe Routine is starting to pay off. My mom has always said that humans (and their pets, too!) thrive on routine. Like when you've been away for awhile and you come home to your own bed, own shower, own fridge - your brain releases mega endorphins. There's no place like home, right?
Well, when I wake up every morning, I take a few moments to really appreciate my calm, cozy home, the memory foam mattress, the many art pieces on the walls and shelves created by amazing friends, the sound of cicadas (they purr 24/7 - wild), my pantry filled with ethnic treats and lots of dark European chocolate, and of course the crazy cats that make me laugh constantly.
I have four and they're such good buddies they groom each other and, in winter, pile up in a huge warm heap - nice.
Last, I believe that for me, the synapses in my brain are being trained very gradually to a new routine by first following the routine against my will. To quote my mom again: "Even if forced at first to do something new, your brain will, in time, catch up to your body. Especially if it's a better routine."
So as I force myself to go to bed at a certain time, rest at certain times, stop at certain times, etc., these routines are becoming my new reality.
Gaining more mental clarity and losing some intense pain are huge motivators. I still have daily setbacks but they're smaller and less damaging. I'm learning to view things outside my routine, or envelope, as a hot stove. I recoil at the thought of touching it. I ask myself: "What happened last time?" And the fear I feel is usually enough to chase the thought away.
Best of all, I see the finish line. Way, way down the line. But now I see it. In fact, I see us all there!
A splendid sight, indeed.
- Catherine O'Neal