Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Diagnoses: Migraine, Fibromyalgia
Age at Diagnoses: late 20s
How are you currently treating your conditions?
At the moment, mainly by lifestyle changes. I made sure I get regular sleep (when possible), exercise, and eat in moderation. I have abortive medications I can take when I get a migraine attack. I also see a chiropractor, wear tinted lenses (called Theraspecs) when I’m in a lighting situation that can trigger a migraine, and I keep informed of the latest research. My fibromyalgia (which may or may not be the correct diagnosis) is mainly fatigue-based and I haven’t found much to help that, but luckily it’s not constant and the best thing to do for a flare is to sleep until I feel better.
What are the biggest challenges you have faced since your diagnosis?
For migraine, the biggest challenge was lowering the frequency and intensity of my migraine attacks. It took many different health professionals, treatments, and most of all, time. It took an emotional toll on me, as it was shocking to go from being in a state of health to a state of disability—it happened very quickly after my diagnosis. It was a challenge to keep my identity intact and not just become my illness. I feel like I lost myself for a little while, but it wasn’t permanent and all in all was a way to grow and learn about myself.
What are your favorite tips and tricks for managing everyday tasks?
I don’t always take my own advice, but I’ve found it beneficial to not cram something in every moment of the day and to be kind to myself if I don’t get it all done. For me, a minimalistic lifestyle has helped the most. I tend to keep things as simple as possible. One example is my wardrobe. I only keep clothes that fit me and look good and I own maybe about 30 items including shoes. With less choice to worry about every morning it’s less “spoons” spent on going through my day. For example, I belong to a networking group that meets weekly. I have three business outfits I wear for it and I rotate them out. No one has ever noticed or cared. I am well-dressed, and I don’t have to think about it.
How do you manage to keep facing forward every day?
I found myself brought to tears the other day because I had to stay home from work and a deluge of self-blame and guilt came on me. It’s hard when you’re not feeling well to think rationally. However, I find the more rationally I can approach a situation the better. I reminded myself of what I’ve done lately and when I put it into perspective. I knew staying home would be a win-win, because I could do my job better if I was more well-rested. When I thought about it in a level-headed manner I knew I was being the most “productive” by giving my body what it needs.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
With migraine, I would explain to “past me” some of the nuances of treatment and explain how bad the disease can get if not treated aggressively. I was hesitant to take the medicine prescribed to me so my attacks were treated too late in many cases. If I had treated them earlier it’s possible they may not have spiraled out of control. With fibromyalgia, I would tell myself this isn’t my new identity and doesn’t have to be my life. Many of the symptoms were a result of being ill from migraine and have lessened over the years. I know that is not the case with everyone with fibro, but either way it does not have to be embraced as a new identity.
Do you have a blog you would like to share?
Yes, you can find me on migraine.com (I am the only contributor with the first name Lisa), and I also run a blog at youdecideproject.wordpress.com that is an interactive novel and fundraiser for migraine research.
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