Fibro Warrior of the Week (#48)
Location: Bel Air, Maryland, USA
Mantra: This too shall pass.
Diagnosed while serving in the military, Shay L. has come to understand that she must live differently in order to live fully. An active family woman, she keeps plenty of humor and happiness in her life.
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Shay: I am thirty-one, and was born and raised in Western Massachusetts. I am the third born of four girls, and no brothers to my dad’s chagrin. I got married shortly after high school and had a son with my husband, though we divorced shortly after he was born. I struggled with PPD and didn’t think I was capable of raising my son, so I joined the military. I’ve been in for ten years now and am about to retire medically.
FD: When did you first suspect that something wasn’t right? What happened?
Shay: Just a couple weeks after returning from my last deployment, I noticed that the soreness from body armor and sleeping on cots wasn’t going away. I saw dozens of doctors over the course of three years, was prescribed a dozen muscle relaxers and pain killers before a rheumatologist finally diagnosed me with Fibromyalgia.
FD: When were you diagnosed with Fibromyalgia?
Shay: I was first diagnosed in 2012 and thanks to military caution, I have had the diagnosis confirmed by about six doctors since then.
FD: When you received your diagnosis, how did it affect you?
Shay: I had very mixed emotions. I was relieved that what I was feeling had a name. I was exhausted from having pushed myself in physical therapy and at my job for so long without any results; it was forgiving to find out that it wasn’t possible to fix myself. I also struggled with the diagnosis because it is a very hard thing to accept that “this is life”.
FD: Since then, how has your outlook on life changed?
Shay: Well, I am medically retiring next month, so that’s big. I’m still having to remind myself not to push too hard, and to forgive myself when I just can’t do it for a day. I’m more grateful for the good days, and I cringe when I see snow on the forecast.
FD: How does Fibro affect your day-to-day life?
Shay: Fibro has affected every aspect of my life. I have to plan breaks if I am driving so that I’m not in one position too long. Doing the dishes is a challenge— the top shelf is fine! The bottom shelf is not. Some days I have to ignore the dust bunnies. Oh, and sex. Yeah. Of all the things you don’t want something unpleasant to happen to… Anything too repetitive, I’m likely to start spasming. If I ignore the discomfort because it’s worth it, I pay for it for a day or two.
FD: What can’t you do anymore because of Fibro?
Shay: Video gaming with the kids or my husband, like real gaming marathons. I don’t have a chair in my house that I can sit in for long, and if I have my neck too tense, or I’m holding my arms flexed for too long, it starts to hurt. I also couldn’t deploy anymore, or keep up with my military career.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Shay: I take so many naps. If I don’t get in a nap midday, I am so exhausted by bedtime that I’m liable to breakdown in tears.
FD: : What has been your experience with seeking medical treatment for Fibro?
Shay: Make the provider listen. Tell them EVERY symptom you have, even if it seems unrelated. Tell them EVERYTHING you’ve had done already. Keeping a binder or notebook is a great idea so you can keep track of tests, dates, locations and contact info. And be relentless. In the military they give Motrin for every malady. I really had to stop them, tell them that it wasn’t acceptable, and even go to the patient advocate to get help.
FD: How has Fibro affected your relationships, friends, family, partners?
Shay: I don’t see my friends as much because I’m so tired all the time. I sort of simultaneously grew out of the “twenties” phase of social gatherings and developed FMS, so dinner and a cocktail is about as crazy as I get. I also don’t see my family in MA as much as I would like. I have to carefully plan the trip so that I’m not completely broken.
FD: What is the biggest challenge you face living with Fibro?
Shay: I don’t know whether it’s my inability to keep track of moving pieces, or trying to actually adhere to a schedule. Any little thing can set off a chain reaction that leaves me bed bound for a day or two. It’s hard to live like that.
FD: What inspires you to keep on fighting?
Shay: My husband. He is so supportive. He is always there for gentle hugs. And the kids. I want to still be the a mother to my son, and an active step-mom for my husband’s boys.
FD: What advice do you have for other people who are living with Fibro?
Shay: Learn to forgive yourself. If you can’t get Christmas presents because it would mean standing in lines and your hips are screaming, explain it, and move on. This isn’t something you planned on, and society doesn’t base its standards on folks like us. So we have to forgive ourselves. We are just living differently.
FD: Do you have a funny Fibro story you can share?
Shay: Is there really such thing as a funny Fibro story? Haha. I can’t think of anything off the top of my head, but there is still plenty of humor in my life.
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