June 16, 2008

Nicole Sloan
Diagnosed: 2003
Residence: Drexel Hill, Pennsylvania

Nicole Sloan’s family quickly grew after she decided to provide respite care for a foster mom. Driven by the need and her own big heart, Nicole soon became a foster mom herself. Over the years, more than 20 children have lived in her home. Today, Nicole has eight children, four boys and four girls ranging in age from 6 to 20. She has a biological son, and her partner also has a child; she adopted the other six children. The family focuses on what really matters to them, weighing and understanding the tradeoffs before making a decision to move forward.

Q. What type of challenges have you encountered raising children while suffering from fibromyalgia?
A. There’s a lot of running around… soccer practice and games, and everything else. At its worst, I remember just sitting and crying, and saying, ‘I think I need a scooter. I just can’t do anything.’ And I felt like I was letting them down. When I was healthier, I could go and play ball and I could take them to the playground. At my worst, I couldn’t move off the couch, let alone play a game with them. That was the worst. I felt like I was missing out on them.
 
Q. When type of adjustments did you and your children make?
A. We learned how to manage it together—sort of like, ‘If you want Mommy to go to the Sock Hop with you on Friday night, then I can’t be doing all this other stuff during the day.” They had to learn the tradeoff.

Q. You mentioned in a letter to the NFA that you felt like you had failed as a parent. What did you do to help overcome those negative feelings?
A. It was setting realistic goals. I taught a chronic disease class at the hospital where I worked and that helped tremendously. And I started telling people that I had fibromyalgia and explained it to them. I made some adjustments in my workplace, too. I requested to have all the classes I taught on the same floor, instead of having to go up or down floors several times a day, and I made sure I took my break in the morning and afternoon, and at lunch. Fibromyalgia is really limiting, so I did things to make me feel like I wasn’t limited. You can limit what you do, but that doesn’t mean you have to be limited.

Q. Fibromyalgia has often been seen as a disorder that strikes middle-aged white women. Has your ethnicity had any impact on the way your co-workers or healthcare provider reacted to your fibromyalgia?

A. No, but I had difficulty finding somebody I could identify with. The pictures I saw [of FM patients] were all white women.

Q. How does your life today compare to when you were first diagnosed?
A. My quality of life is much better. At its worst, because I was not mobile, I gained 50 pounds. I remember crying, ‘I’m going to be in a wheelchair.’ Slowly but surely, I learned what I needed to do to get movement, like swimming and finding a therapeutic pool that was warm enough. Finding things that got me moving helped.

Q. How do you keep your symptoms under control?
A. I always remember that I am managing this disorder. When I forget that, I slip back to my old ways and the pain intensifies, reminding me of what I need to do: eat right, stay active, sleep and relax.

Q. What advice do you have for those who have yet to experience the type of improvement you have?
A. At that point, your full-time job is to figure out what works. You can get back to being normal if you can redefine what normal is. For me, normal is being able to enjoy things with my kids. So that means my house isn’t always clean. That’s the tradeoff. The things that are important to me, I can get done.

Q. Do you have any suggestions for other moms with fibromyalgia who have kids at home?
A. I think it’s really the same thing. What is important to you as far as your relationship with your kids? And that’s what you focus on. If it’s reading them books at night, then make sure that gets in. I may not be able to pack lunch; I might have to send them with lunch money. But packing lunch isn’t my priority, reading books at night is.