Give us a few basics about yourself:
I’m married, a writer, editor, and book coach working (20 hours / week) from my empty nest home. In my non-working time I walk (a LOT), read, garden, listen to music, visit beaches and picturesque villages/towns, exercise, and spend a crazy amount of time in the kitchen with my chef-husband.
What lead up to your diagnosis?
I’ve had symptoms off and on since 1978 (mostly off, then increasingly on). In 1997 the pain, fatigue, and muscle cramps hit hard and became quickly unbearable. This led to ever-increasing disability while one doctor after another suggested that I was depressed or hysterical. Finally a woman osteopathic primary care provider believed that there was clearly something physically wrong, that this was not all in my head. She sent me to a rheumatologist who diagnosed Fibromyalgia—but he sent me away saying there was nothing he could do for me.
Neither my osteopath, nor I, had ever heard of Fibromyalgia. So we both read a decent book (which is now outdated). She referred me to occupational and physical therapy. Ergonomic awareness, myofascial release, and warm-water pool therapy provided some desperately needed immediate relief. After that, a long series of trials and errors led to my present way of managing my life (explained in more detail, later in the interview).
What was your life like at the time?
I was married, working as an arts educator (teaching creative writing and theater arts).
How did your family initially handle your illness?
They were wonderfully supportive, perhaps too much so. They hated to see me in pain, were sad that I was no longer the vibrant, energetic person I had been, and they coddled me. I think they were greatly relieved that I wasn’t dying.
What do you feel is the most challenging aspect of Fibro?
The pain. It’s very difficult to manage, and sometimes depressing.
Do you have any other co-existing conditions?
I have multiple chemical sensitivities, migraines (now mostly under control, since I know the triggers) and a thyroid auto-immune disorder. When those flare up, the Fibromyalgia symptoms become even more difficult to manage.
What (if anything) have you found/ done that has improved your symptoms?
Keeping a health journal helped me identify most of the factors that aggravate and alleviate my symptoms. Through that, I discovered what helps: maintaining an attitude of gratitude; eating nutritionally—a wide variety of whole, natural foods–and keeping my blood-sugar levels stable; enough sleep, rest and pacing; hot baths/showers; appropriate aerobic activity (lots of long walks); ergonomic/kinetic awareness; strength/balance training through a combination of modified yoga-style stretches and very gentle Pilates; myofascial release with a Thera-cane and foam rollers; relaxation exercises; prayer/meditation; hugs from and laughter with people who love me.
How open are you with friends & family about your illness & symptoms?
I’ve stopped talking about how I “feel” all the time, because they understand, and don’t need the constant reminder that I often feel rotten. Mentioning it only makes them feel powerless, frustrated and depressed. I don’t, however, fake energy I don’t have. And when I’m in an awful lot of pain, I say so. And all the time, I tell everyone explicitly what I need to do for myself. I’ll say, “I’m going to take a nap right now.” Or, “I’m not cooking dinner tonight.” Or, if we’re out shopping or kicking around I’ll say, “I need to go home now.” And this summer I said, “I won’t be attending the family reunion.” I don’t ask them if what I need is okay. I just tell them what I’m going to do.
I know they are sometimes disappointed that I can’t do more, but I don’t let their disappointment change my convictions about what is, and what is not, good for me.
Do you blog about your illness? If so, what inspired you to do so?
Yes, I blog about my life in New England: writing; cooking and eating; exploring/walking; and living well. Within those topics, about 20% of the time I talk about living well despite everything (everything = any adversity that makes life difficult). And of that 20%, I sometimes mention something about Fibromyalgia and/or chronic pain. Fibromyalgia is definitely a daily part of my life, but I’m not going to let it entirely define who I am. I’m also not going to hide it.
I started my blog because I wanted to share my experience. But then I met so many amazing people through blogging, and most of them do not have Fibromyalgia. So my blog became a social network. Blogging is one of the ways I spend time with friends who share my interests (exploring the world; nature; fitness; good food; living with gratitude; writing, reading, music and all things creative) and with those who share my life-philosophy (that it is possible to live well in the face of adversity). It has become a great source of friendship for me, because I can “engage” when I’m feeling well, and the party is always there, waiting for when I feel up to “showing up.” Just like in real life, I hang out online with some cool people who have Fibromyalgia, and more cool people who don’t.
What is the best advice you’ve received regarding Fibromyalgia?
Be committed to healthy living and make the lifestyle changes that are recommended for everyone — eat well, exercise intelligently, get enough rest, reduce stress, commit to healthy relationships and minimize time spent around emotionally toxic people; strive to be content.
What was the worst advice that you followed?
I was given a lot of unsolicited advice from people who wanted to sell me expensive cures for everything in the world including Fibromylgia (some new miracle nutrient, supplement, or product line produced by multi-level marketing companies). But I never followed any of that advice and I didn’t buy their juices, pills, potions, or gadgets. And I never saw any of the people who were selling those products realize their dream of getting rich.
What is your favorite way to cope with your life as a spoonie?
Walking. I love walking. I use it to burn of uncomfortable emotions (anxiety, anger, hurt feelings). I love being outdoors in all kinds of weather (I dress for it); I love the solitude of walking alone; and I love the companionship of walking and talking one-on-one with my husband or with a friend. Did I mention that I walk a lot?
What is one thing you’ve learned about yourself since your diagnosis?
I expected too much of myself and of everyone else and I expected too much for myself. I’ve become happier, more content and more patient since my diagnosis. But that didn’t happen overnight. It took hard work and it took time to change. I’m sure I’m more fun to be around today. I was very much an over-sensitive perfectionist. I’ve learned that I’m still loveable and still loved, even with my weaknesses and imperfections
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Accept that, until there is an identifiable cause for Fibromyalgia, it is impossible to come up with a cure. We can only treat and address the symptoms. And so far, the most reliably proven treatments to help minimize pain and fatigue are lifestyle changes. Therefore beware of anyone who promises to eliminate your pain or get all your former energy back for you. Don’t give them your confidence and don’t give them a lot of money.
I’m not saying I’m against using prescriptions or supplements—if they make sense to you, by all means, try them. But in my case, the relief they provided (and I tried them all) wasn’t substantial enough to justify the expense or warrant the side effects.
Is there anything else you’d like the readers to know?
Having fibromyalgia is really, really challenging. But it actually is possible to live a fulfilling, happy life, despite (and in my case, possibly because of) those challenges.
If you enjoyed this interview, be sure to check back each Wednesday for a new Fibro Warrior interview. To ensure that you don’t miss an interview, sign up for my email alerts. If you live with Fibromyalgia, I’d love to have you share your own story.