This week we are talking with Ashli Chantelau of Huntsville, AL. She is another Fibro Warrior that I met through Twitter. While she lives right here in my hometown, we’ve not officially met yet. Hopefully, we will remedy that soon now that the weather is warming up. Ashli was diagnosed in 1998 when she was 17 years old.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I’d been dealing with migraines since I was a kid. However, for the last year I’d had this unrelenting fatigue and severe body/joint pain. I was in 5 car accidents between 12 yrs old and 17 yrs old. At 16 & 17, 2 accidents were at speeds in excess of 45 mph and I was sitting still at red light. I had physical therapy both times because I had wicked whiplash. I really feel like both the trauma from the car accidents and being sick so long with migraines precipitated the Fibro onset. I always had neck pain after those accidents but it worsened and never got better. (BTW NONE of those accidents were my fault. LOL I just had horrible luck.) My Neurologist recommended that I see a Rheumatologist. The first rheum appointment she loosely diagnosed me with Fibro.
How did your family initially handle your illness?
I lived with my parents, and had already been diagnosed with chronic daily headache and chronic migraine so being ‘sick’ wasn’t new. I had already, years before, been withdrawn from school and home schooled. It was hard because I didn’t “look” sick. I was so young so the majority of the people I came in contact thought I was being a bratty teenager. That was hardest. The people who told me it was all in my head. That I was being a spoiled brat and needed to get over it. My parents just felt helpless. After I had my daughter I understood that feeling but then I always thought “How silly. Like this is your fault.” They were always supportive. They got me to the best doctors, paid for extra things insurance didn’t cover, buying herbs/vitamins/supplements, etc.
I lived with my parents, and had already been diagnosed with chronic daily headache and chronic migraine so being ‘sick’ wasn’t new. I had already, years before, been withdrawn from school and home schooled. It was hard because I didn’t “look” sick. I was so young so the majority of the people I came in contact thought I was being a bratty teenager. That was hardest. The people who told me it was all in my head. That I was being a spoiled brat and needed to get over it. My parents just felt helpless. After I had my daughter I understood that feeling but then I always thought “How silly. Like this is your fault.” They were always supportive. They got me to the best doctors, paid for extra things insurance didn’t cover, buying herbs/vitamins/supplements, etc.
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| Ashli with her daughter |
How has your family/ work situation changed since Fibromyalgia entered your life?
I’m a mother and wife now. When my daughter was little she didn’t understand Fibro. Even “Mommy is sick.” didn’t fully sink in. Now she is 11 and she’s probably the most compassionate person in my life. She is always asking how I *really am and making sure I rest. It’s both wonderful and horribly guilt inducing. It’s harder to pace myself. I feel a lot of guilt because while I haven’t ever been ‘normal’ or pain free since I can remember, I feel guilty about not being as active as my age should allow.
I’m a mother and wife now. When my daughter was little she didn’t understand Fibro. Even “Mommy is sick.” didn’t fully sink in. Now she is 11 and she’s probably the most compassionate person in my life. She is always asking how I *really am and making sure I rest. It’s both wonderful and horribly guilt inducing. It’s harder to pace myself. I feel a lot of guilt because while I haven’t ever been ‘normal’ or pain free since I can remember, I feel guilty about not being as active as my age should allow.
What do you feel is the most challenging aspect of Fibro?
The fatigue. Most of the time fatigue is really hard to work around.
The fatigue. Most of the time fatigue is really hard to work around.
Do you have any other co-existing conditions?
Chronic daily headache and chronic migraine. I have had migraines since I was 6. They became chronic at 12. My neurologist was the one who suggested I see a rheumatologist. He is a great listener and believed in Fibro. I also have nerve damage in my neck and knees. I feel like my migraines control the Fibro. They are my dominant illness. Sleep deprivation and nausea/throwing up can cause a flare. As I get older, I get more and more symptoms of Lupus. However, my antibody tests were negative. Eventually I’ll make it back to a rheum and maybe do some more bloodwork and see what we’ve got. After so many years of tests and doctors, I just needed a medical break.
Chronic daily headache and chronic migraine. I have had migraines since I was 6. They became chronic at 12. My neurologist was the one who suggested I see a rheumatologist. He is a great listener and believed in Fibro. I also have nerve damage in my neck and knees. I feel like my migraines control the Fibro. They are my dominant illness. Sleep deprivation and nausea/throwing up can cause a flare. As I get older, I get more and more symptoms of Lupus. However, my antibody tests were negative. Eventually I’ll make it back to a rheum and maybe do some more bloodwork and see what we’ve got. After so many years of tests and doctors, I just needed a medical break.
What have you found/ done that has improved your symptoms?
Pacing myself. Which is an art in and of itself. Avoiding dyes and eating clean(er). Water therapy; swimming/walking in a pool.
Pacing myself. Which is an art in and of itself. Avoiding dyes and eating clean(er). Water therapy; swimming/walking in a pool.
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| Ashli and Hubby |
How open are you with friends & family about your illness & symptoms?
They know I suffer. I’m more than willing to explain any symptoms, causes, treatments, etc, but I find most people aren’t willing to listen. And even with explaining they still don’t “get it”. So that leads me to say the ever so common “I’m fine.” 85% of the time.
They know I suffer. I’m more than willing to explain any symptoms, causes, treatments, etc, but I find most people aren’t willing to listen. And even with explaining they still don’t “get it”. So that leads me to say the ever so common “I’m fine.” 85% of the time.
What is the best advice you’ve received regarding Fibromyalgia?
Not to worry about the ones who don’t believe it exists. That it ISN’T all in my head and I’m legitimately sick.
Not to worry about the ones who don’t believe it exists. That it ISN’T all in my head and I’m legitimately sick.
What was the worst advice that you followed?
Anything that was followed by “It cured my aunt’s best friend’s uncle’s lawyer’s proctologist….” I was so desperate to ‘cure’ myself when I was younger I tried ANYTHING. I’ve learned over the years that there’s no magic pill or drink. It’s a combination of many things and even then, there might not be a ‘cure’.
Anything that was followed by “It cured my aunt’s best friend’s uncle’s lawyer’s proctologist….” I was so desperate to ‘cure’ myself when I was younger I tried ANYTHING. I’ve learned over the years that there’s no magic pill or drink. It’s a combination of many things and even then, there might not be a ‘cure’.
What is your favorite way to cope with your life as a spoonie?
Blanket burrito, heating pad and a good book.
Blanket burrito, heating pad and a good book.
What is one thing you’ve learned about yourself since your diagnosis?
I am so strong. Stronger than I ever thought. Getting through being a sick kid was hard. Getting through being a sick teenager was harder. But conquering being a sick mother? Ah, the hardest yet. I always think I’ve got nothing more to give…..that’s often when I find an extra bit.
I am so strong. Stronger than I ever thought. Getting through being a sick kid was hard. Getting through being a sick teenager was harder. But conquering being a sick mother? Ah, the hardest yet. I always think I’ve got nothing more to give…..that’s often when I find an extra bit.
If you’d like to get to know Ashli better, you can follow her on Twitter.
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