This week’s Fibro Warrior is Sarah Woodard from Nashua, NH. She is single and lives with her two kitties (Jim and Yodette). She works full-time, and enjoys martial arts, beekeeping, Reiki, reading, crossword puzzles, and knitting. She was diagnosed around 2000 at the age of 20, after having “unexplainable” symptoms for seven years.
Tell us a little about yourself. Are you married? Kids?
Not married (been there done that, never again! LOL) No kids – don’t want any; 2 kitties (Jim and Yodette) – the best babies ever :), and a super awesome Beta fish named Fiesta. I work full-time (starting a new job next week).
What lead up to your diagnosis?
The first symptom I clearly remember was in 8th grade – my right knee gave out while going down the stairs to the basement. I fell all the way to the bottom and then seemed fine and got up and went on with my day. I told my parents and that started a gambit of doctors’ visits from GPs, to neurologists, to sports doctors, to psychologists…all saying that nothing was wrong with me. At one point I was even diagnosed with bi-polar disorder (they were wrong too…). When I finally got a diagnosis, I was a sophomore in college taking a full course load and working.
What is your work/family life like now?
I’ve recently gone back to work full time and commuting 40+ minutes each way, my body, and every system that makes it up, have been in almost constant rebellion. To try to explain what that’s like: I’m completely out of energy for the entire week by Monday afternoon and still have to get through the rest of the work week pretending like nothing is wrong. Have you ever gone to work with a really bad flu for weeks a time and not been able to let on that you’re sick? It’s kinda like that… Add to this the blessed stabbing pains. It’s like being jabbed with a red, hot ice pick at random places all over my body. And this particular ice pick is equipped with a button that is randomly pressed and causes the pain to shoot out in a single, but varying direction each time it’s depressed. The plus side there is that it keeps me from nodding off at the wheel. By the time I manage to get myself home, I’m frequently too tired to feed myself, or even talk. I sleep, sort of, sometimes, but even then frequently don’t wake feeling rested and get up and do it all again. Weekends aren’t enough time to rebuild myself and somehow I also need to fit in chores, errands, and oh yeah having a life! I constantly have to choose what I spend my energy on. While all of this is completely normal with fibro, since forcing myself to get through a 40 hour work week plus commute to meet my financial needs, it’s greatly intensified. This has kept me from making it to the dojo since I started work.
How did your family initially handle your illness?
My parents still don’t really get it. They tried to act like everything was fine and still do. My “chosen” family – the group of friends I’ve finally allowed in and choose to be real with – they’re amazingly supportive. My life would be a lot tougher without them. Very blessed to have finally found such a great group of people!
What do you feel is the most challenging aspect of Fibro?
Educating others about it. It’s so hard to break through the “you look fine” barrier.
Do you have any other co-existing conditions?
Probably, but I can’t remember the last time I went to the doctor and I make a probably incorrect assumption that anything that’s “off” is somehow related to the Fibro, but since that’s the best the doc would do anyway, I go with it.
What (if anything) have you found/ done that has improved your symptoms?
Keep moving and stay positive. Marital arts has really helped me with both of those. I was lucky enough to find a dojo where the Grand Master/owner was willing to work with me and my Fibro challenges. It took a lot of time and unfortunately, a little drama, but he does understand now and was able to work with me to find a way to enable me to earn my black belt rank through an alternative, and safer for me, method than the traditional 8 hour test. Also diet – for reasons of my own, I went vegetarian a while ago and then went off gluten when I figured out I was intolerant to it. I do notice a difference in how I feel when I’m “contaminated” and I’ve read studies recently that advocate both diet choices for people with Fibro and other chronic pain.
[Tweet “Keep moving and stay positive! Advice from Fibro Warrior Sarah”]
How open are you with friends & family about your illness & symptoms?
I’m getting to be more open about it in general thanks to a very tight circle of friends, but I still don’t really talk to my family about it (though we don’t talk about much of anything anyway…)
Do you blog about your illness? If so, what inspired you to do so?
No, but I’m working on my memoirs. What inspired me to do so was all the input I got after achieving my black belt. So many people, many of whom I only know by sight from the dojo, came up to me (and still are) saying how I’m an inspiration and wanting to know more. I feel compelled to broaden the reach of the positive energy; to inspire and help as many people as I can no matter what their challenge is.
Update: We finally convinced Sarah to start her own blog; Check out A Butterfly Flaps Its Wings.
What is your favorite way to cope with your life as a spoonie?
I use the spoon analogy all the time and I actually carry an extra spoon in my purse. A real metal spoon. 🙂 And a couple of my friends, the day I was testing for my black belt, gave me a bouquet of plastic spoons! I keep them on my dining room table.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve had it for so long, I really can’t remember life before it…But a lesson I had to learn in order to cope as it has progressed is how to draw a truce with my body. I want to push, but shouldn’t and my body was rebelling more and more. I had to learn how to compromise between pushing and “giving in.” And learn that sometimes it’s stronger to stop and rest or even to ask for help.
[Tweet “Learn how to draw a truce with your body. Learn to compromise.”]
What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
Never stop advocating for yourself and learn to be patient with yourself.
[Tweet “Never stop advocating for yourself and learn to be patient with yourself.”]
Is there anything else you’d like the readers to know?
I’ve always believed that everything happens for a reason. Therefore, there is a reason I have Fibro. I’m still figuring out what that is, but I don’t doubt for a second that I’m supposed to use it to help and inspire others. Also, just a cool connection: my favorite color is purple and I’ve always believed that the butterfly is my spirit guide. That was long before they became the Fibro awareness color and symbol, which I think just further proves that I’m supposed to have Fibro and I’m supposed to use it.
Sarah invites you to contact her via email.
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