When were you diagnosed? How old were you at the time?
You would think this is an easy question to answer, but it isn’t. The short story is that I was diagnosed in 2013, at the age of 43. The longer story is that I should have been diagnosed in my early twenties. I have been fighting fatigue, irritable bowel, and pain for decades.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I knew for sure that something was wrong with me when I turned 25. Until then, I couldn’t gain weight for beans. Then suddenly, I went from a size 5 to a size 12 in ten months. That’s a lot of weight for me, because I have a very small frame, and it happened so quickly. Looking back, I’m sure that’s when I started to develop Polycystic Ovarian Syndrome (PCOS) with insulin resistance.
I always had the most difficult time with work. I was bright, resourceful, and had great reviews from my employers, but I also had to take sick leave often. When I was 30, I just couldn’t seem to do anything and would be exhausted just walking up the stairs, in my home. I was off work for some months with a debilitating fatigue. I saw different doctors, and even though I had the symptoms of irritable bowel syndrome (IBS), no one thought to test me for Celiac disease.
My favorite part was that two years later, while still complaining of exhaustion, I was sent to a doctor who did the Fibromyalgia pressure point test and told me I was healthy as a horse. Yeah, right, so healthy I couldn’t function. Months after that appointment I was sent to a fertility specialist because we couldn’t conceive and found out I had PCOS. He was a wonderful doctor but still, no one thought, fatigue, IBS, PCOS, let’s test her for Celiac.
So, I found out we couldn’t have children. That was a blow. And then, the litany of events: hypothyroidism, low iron absorption, menstruating twice a month, low-normal bone density, and the clincher, severe chronic pain. Symptoms were treated, and no one thought to look at the big picture.
Finally, at 38, some friends with Celiac disease told me to get the blood test. My understanding is that while it can have false negatives, a positive is a positive. The test came back positive and it was suggested I eat gluten free.
I flourished. Pain was there but I healed from injury much quicker. IBS disappeared, thyroid stabilized with meds and even improved, iron returned to normal, my insulin-glucose levels were fine, and my periods regulated for the first time in my life. I was even exercising regularly, and at 40, was in the best shape of my life.
Then 42 came, and with it, the hormonal changes of peri-menopause. Suddenly, it got much harder to exercise, the fatigue heightened, and I was having more pain than I had in years, and in targeted places. While I always suspected that I had Fibromyalgia, I dismissed it after going gluten-free, because of the health improvements. But this time, it was hard to ignore.
After reading an article in 2013 about the disorder, it became obvious that I had it. At the time my symptoms included bi-lateral pain in hips, knees, elbows, and ankles; costochondritis in the chest; and unusually difficult and prolonged fatigue. Sure enough, when my current doctor did the pressure test, I nearly turned around and belted him for hurting me!
Were you working at the time?
I have a small business with two branches—technical and creative. At the time I was diagnosed with Fibro, I was working from home as a Web developer. (For several years it had been very difficult for me to work in an office environment, outside the home.) I also started a craft-making business, where I sold hand-made cards.
What was your family life like?
We never did have children, but my husband and I have each other. He’s a keeper. As soon as I told him that I had Fibro, he just got it. It seemed to explain why making plans was so difficult for me. I would never know from one week to the next if I could keep a commitment. He picks up a lot of slack for the things I cannot do, and he is always pushing me in a good way, to enjoy my life as best as I can.
How did your family initially handle your illness?
My family is supportive overall. I can tell they don’t quite understand, but they are sympathetic. My close friends are amazing. I have a few who have chronic illnesses, too, including fibro, so we empathize with each other.
How has your family/ work situation changed since Fibromyalgia entered your life?
Work is the challenge. Aside from the Fibro Fog (a cloudiness of the mind), I am still very mentally competent at what I do. I always say that if my body matched my mind, I’d take over the world! However, there has been this wonderful little gem in my life. I started working part-time at an art studio for people with developmental disabilities called H’Art of Ottawa. Being surrounded by people who put aside their disabilities to show their abilities is such an encouragement. It really keeps me going!
What do you feel is the most challenging aspect of Fibro?
Dealing with the doubters. I could say pain, fatigue, and so on, but truly, it is not being believed that is the hardest thing. I am a very cheerful and upbeat person, and often when you look at me, I look the picture of health. But there is a tempest going on beneath my skin. Just getting up from a chair or stepping off a bus can trigger off a symphony of nerves. When I see people’s eyes glossing over as I speak of my disability, it’s annoying. But I won’t stop speaking about it. It is real.
What other co-existing conditions do you have?
As I mentioned, I have Celiac disease and hypothyroidism. (I don’t have an official diagnosis of Celiac because I went gluten free before doing an endoscopy, but Celiac disease and gluten intolerance is in both sides of my family.) I often wonder if Celiac is like a cousin of Fibro because they seem to share common symptoms. I think I would be much worse if I was still eating gluten. I do have some quality of life now.
What (if anything) have you found or done that has improved your symptoms?
Diet. Not only do I eat gluten free, but I want to test for other food intolerances. Eating well is so important to me. I want my immune system to be as healthy as can be. As for exercise, because I have trouble walking, I play drums. Yes, a Fibro suffer who bangs things with sticks and stomps both her feet! My drum kit has been a Godsend. It increases circulation in the body, loosens the connective tissues, builds core muscles, and is crazy fun! Doing something that releases endorphins can’t be a bad thing. My physiotherapist insists that I play drums regularly!
How open are you with friends & family about your illness & symptoms?
I have decided to be unashamedly open about the illness. I discuss it on social media and in person. People who want to be in my life are going to have to accept me as I am. I have no time for anyone who wants to weigh me down. There is enough to deal with just having this disease and negative people need to go. I am grateful that most people in my life are supportive.
Do you blog about your illness? If so, what inspired you to do so?
I blog about my faith, which is very important to me, and I have mentioned my challenges with health. But I don’t only want to blog about fibro, because there is more to me than my illness. I also blog about gluten-free recipes, although I really need to do more than bake cupcakes!
What is the best advice you’ve received regarding Fibromyalgia?
The best advice I heard was to keep moving. Any kind of movement will do. That’s why I play drums. And I’ll take walks, even though these days I use a cane. I just tell people I am taking my cane for a walk! Staying in bed or stationary for too long will stiffen me right up. I am also determined to get my hip and leg muscles back in shape so I can walk without a cane. Little by little, it will happen.
What was the worst advice that you followed?
I think for me it was more of a passive-aggressive hint to keep quiet and suck it up. Are you insane? I’m a passionate Celt. I won’t keep quiet about anything. And for everyone who rolls their eyes at me, there are people who are grateful that I speak up. If I can encourage one person, for every 100 doubters, that’s worth it to me.
What is your favorite way to cope with your life as a spoonie?
It’s obvious I love music, but I am a wee foodie! I’ll be in the kitchen constantly. I think I am in love with my slow cooker, which a fellow Fibro friend and her husband gave me as a Christmas present. I really enjoy baking, and finding out what else I can do on a gluten-free diet. I just have to remember that gluten-free is not calorie free. Oops.
What is one thing you’ve learned about yourself since your diagnosis?
I often hear the term Fibro Warrior, and it’s so appropriate. We battle every single day. My Twitter handle has the Gaelic word Banphrionsa in it, which means princess, but I tell people that I mean that in a warrior princess way. My cane is my sword, as I head out to slay the evil disease that tries to prevent me from enjoying a leisurely walk in the sun.
I’m a toughie. Sometimes I feel like giving up, but I always manage to keep going. I’m thankful to God for putting people in my life who remind me to take a breath and try and try again.
Now that you’ve gotten to know a little bit about Cait, be sure to check out her website and blogs, Got Grace Yet and Gluten-Free Masticating, and her business website. You can also catch her on Twitter @BanphrionsaCait and Facebook