Fibro Warrior of the Week (#5)
FWOTW: Sue Ingebretson
Location: Orange County, California, USA
Mantra: Simply do what you can with what you already have. Trust your inner voice because you know more than you think you do.
We are very excited about our fifth FWOTW – Sue Ingebretson – and we are so grateful to her for sharing her personal story. She’s been a friend to us on Twitter ever since we started Fibro Daily, but many of you already know her and follow her work. Her inner strength, drive and determination, and service to others with Fibro is truly inspiring. She also makes a mean chocolate soup. -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Sue: I’m a Midwestern Pastor’s kid! I grew up in Iowa in a small Norwegian community. Everyone knew each other as the whole town has fewer than 200 residents. I moved many decades ago and now live with my hubby and Pup in Southern California. We’ve raised three children here and are now grateful to participate in the lives of our children and grandchildren.
FD: When did you first suspect that something wasn’t right? What happened?
Sue: In my early 30s, I knew that my pain levels weren’t “normal”. I’d seem to be okay for a while, and then feel absolutely blindsided by pain. Sound familiar? (Now I can see the stress and other factors that created those flares.) I sought help from my general practitioner, but was dismissed over and over. I felt completely hopeless for many years – more than a decade.
FD: When were you diagnosed with Fibromyalgia?
Sue: I actually had to figure out the diagnosis by myself. I searched for symptom info at bookstores as well as local and university libraries. There was very little information online at that time. I finally put the pieces together by myself (after creating a 3 page spreadsheet of symptoms and experiences that preceded symptom flares) and found the term, “fibromyalgia.” I took this spreadsheet and hypothesis to a new doctor and she said, “No duh. Of course you have fibromyalgia.” I wrote about this whole experience in my book, FibroWHYalgia.
FD: When you received your diagnosis, how did it affect you?
Sue: At that point, I thought I’d finally crossed the finish line of my journey, but I soon realized that I was really just at the beginning. After finally getting a “name” for my condition, it was then up to me to figure out what to do about it. My doctor was wise enough to tell me that she was there as a guide if I needed her, but that healing from chronic illness is truly 10% doctor and 90% patient. I’m so grateful for that advice! I knew it to be true in my heart long before she said it, but it confirmed what I’d learned and I was ready to jump in with both feet and figure things out.
FD: Since then, how has your outlook on life changed?
Sue: Nothing in my life is the same, and I’m so thankful! Before I was ill, I let others dictate my life plans. I felt I was supposed to do what others wanted me to do. I really didn’t have an idea of what I wanted out of life. One of my book chapter titles is, “How I Lost My Balance and Gained a Spine.” It’s a funny thought but it’s true. I was imbalanced in my life (not just the literal imbalance of feeling dizzy all the time). I paid more attention to the needs and interests of others than my own needs. It was a real eye-opening experience for me to start to create my own path and look for solutions that worked for ME. Again, I’m very grateful for the experience because I wouldn’t have learned it in any other way. It’s exactly what I needed.
FD: How does Fibro affect your day to day life?
Sue: At this stage, there are little or no direct physical limitations from my chronic conditions. I experience very little pain, but if I don’t do the self-care activities that I know are important, I can bring on increased pain and symptoms. I do my best to eat well, to get plenty of rest, to take care of my body with exercise and stress-management activities. I know what works and what has healed my body. I can experience speed bumps in life just like anyone else and when I do, my symptoms return to some degree. The good thing is that I can get them under control quickly and efficiently.
FD: What can’t you do anymore because of Fibro?
Sue: There’s only one TRUE physical limitation for me regarding fibromyalgia. I simply can’t wear heeled shoes of any type. I’ve cried big fat tears over this one (it’s sad to be limited to flat shoes when you’re only 5 feet tall!). I experience horrible leg/calf/feet spasms and cramps (all night long), when I wear heels and it’s not worth the sleepless nights.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Sue: Just about everything I do now would have been a surprise to me before my diagnosis. The fact that I wrote and completed a book, the fact that I speak nationwide on this subject, and that I help others one-on-one would have been unthinkable to me. It took me experiencing my own healing success to accept my own responsibility to share this with others.
FD: What has been your experience with seeking medical treatment for Fibro?
Sue: I received no diagnosis help but abundant prescriptions with each visit. It’s my estimation that I saw over 20 different doctors and specialists in my journey for a diagnosis, and I did receive over two dozen prescriptions. None of these eradicated the pain and frustration that I was dealing with. As I’ve mentioned, I had to come up with my own research and solutions for my own health challenges.
FD: How has Fibro affected your relationships, friends, family, partners?
Sue: As I was dealing with the overwhelming frustrations of poor health, I felt isolated and disengaged with others – even those closest to me. I didn’t share my feelings very easily because I couldn’t even identify them for myself. As I began to heal and discover my own emotional issues, my relationships with others improved.
FD: What is the biggest challenge you face living with fibro?
Sue: Because I now experience very minimal symptoms from fibromyalgia, I certainly have nothing to complain of. I guess my biggest challenge is dealing with my inability to participate in activities in the evening. If I do speaking events or activities in the evening, I can’t do too many in a row. I get up early and work all day long, and working all evening long, too just takes a lot out of me.
FD: What inspires you to keep on fighting?
Sue: I love this question because I see it in two parts. First, is a point I’d like to make about terminology. It’s my preference (and simply my own opinion) to consider my condition as something I live “with” rather than something I do battle with or fight against. If I were to consider myself at constant war with my own body, it would create a negative vision or perception in my mind. The second part of this question, is what keeps me moving forward? That’s easy! It’s the same for me and for my clients. The answer is success. As we take steps (even baby steps) forward, we find success – just from taking action. That positive feeling keeps us moving forward.
FD: What advice do you have for other people who are living with Fibro?
Sue: There’s definitely not enough room here to adequately answer this question, but in a nutshell, I refer in my book, FibroWHYalgia, to what I call the Restoration Trio. The caring for and healing of the body stems from three fundamental principles – seeking improvements in food, fitness, and emotional wellness. When the body is supported with proper nourishment, adequate movement, and stress-management techniques, it can begin the healing process.
FD: Do you have a funny Fibro story you can share?
Sue: I’m not sure that this story is as related to fibromyalgia as it is to “busy mom syndrome.” We can all relate to doing too many things at the same time. But back when my children were younger, and I was really quite sick, I was constantly having trouble with word recall. I had trouble remembering things and even worse, found myself saying things that simply didn’t make much sense. One night as I was stirring a pot of chicken soup, my son asked what kind of soup was for dinner. I stared at the pot and said, “Chocolate.” My son said, “Chocolate Soup?” I said, “Yes.”
Even as I said it, I knew it wasn’t right, but had no idea what word was right. To this day, my kids tease me about serving chocolate soup for dinner and maybe someday I’ll comply. Sounds tasty, eh?
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