Fibro Warrior Lisa King – @AFewSpoonsShort

Today we are interviewing Lisa King of SW Ohio, USA. She was diagnosed with Fibromyalgia in 1992 at the age of 31. She’s married with two adult children, four grandchildren, and a cat named Edward. She’s is on disability due to anxiety and depression (likely made worse by Fibromyalgia). She loves all forms of needlework including quilting, cross-stitch, weaving, spinning, and knitting.

What lead up to your diagnosis?
I’ve never been strong. I couldn’t play hard like my friends. In elementary school, I would get a horrible headache after every phys ed class, and the same would happen as I got older every time I went swimming or bike riding. I didn’t realize until years and years later that these were migraines, with the accompanying aura and nausea. So, really, I sometimes think I’ve had a form of FM all my life. I knew I needed to see a doctor the day I got halfway into my car in the grocery store parking lot, and had to rest before I could pull my other leg in. And I had to lift that leg with my hands to get it in.

How did your family initially handle your illness?
The kids were too young to really understand, though as they grew older they saw how much I suffered. My husband acknowledged it, but still couldn’t understand why I couldn’t keep the house cleaned up and his shirts ironed in a timely manner. Luckily, he’s realized more recently how bad I’ve gotten. He does all the grocery shopping and yard work now.

What do you feel is the most challenging aspect of Fibro?
Dealing with guilt and shame. I feel guilty because my house always seems messy, and I’m embarrassed that I can’t get out to do stuff with friends. I know my reasons are valid, but I’ve heard too many remarks on the line of, “If you would JUST xxxxxx…” Like I’m not smart enough to see how easy the solution is. (Picture me rolling my eyes here.) Even though I know it’s just ignorance, it still bothers me sometimes to think that people have the idea that I’m some kind of slacker. Therapy has been helping.

Do you have any other co-existing conditions?
I mentioned above my depression and anxiety. For sure, that bundle of things goes hand-in-hand with FM. I’ve learned to tell if it’s depression or FM that’s getting me down. If it’s FM, I’ll want to do things, but my body won’t let me. If it’s the depression, I don’t care about or want to do anything. When I can’t even get interested in my latest knitting project, THAT’S depression!

What (if anything) have you found/ done that has improved your symptoms?
Not much. I think I would probably feel better if I had a more healthy diet, but it’s too difficult right now to think about figuring out a new way to eat. I’m managing my symptoms by improving the way I talk to myself about the whole thing. No more beating myself up when I can’t do what I want/need to do.

How open are you with friends & family about your illness & symptoms?
I try very hard not to complain, but I have no problem with telling people when my FM is flaring. I’m very open about my mental health issues as well, because I want to be available for someone who might be struggling with the same things, but be afraid to talk about it. I want people to see that mental health issues are no more stigmatizing than, say, diabetes, and that chronic illnesses are not a moral issue.

What is the best advice you’ve received about Fibromyalgia?
Take good care of yourself, and know when to rest. And stop beating yourself up about it.

What was the worst advice that you followed?
Possibly that thing about forcing myself to exercise. That just makes it all worse.

What is your favorite way to cope with your life as a spoonie?
Probably food, which is totally NOT a good way. I do a lot of journaling, and I print out PDFs that help me remember to take care of myself. I have several of them taped up in my computer/writing area, and seeing them every day really helps me keep myself centered.

What is it that inspires you to keep going, despite your illness?
Well…what choice do I have? My family needs me, and it makes me happy to be able to help others who are struggling, so that keeps me on track. As much of a “track” as there is, LOL.

What is one thing you’ve learned about yourself since your diagnosis?
That I burden myself with guilt and shame, and I have to constantly work at remembering that I really am SICK, and I deserve to be well-treated, especially by myself.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Educate yourself, and take what doctors say with a grain of salt. I believe I know more about FM than some of the doctors I’ve seen, so I can weigh their advice against what I know about FM and what I know about my body. And that’s another key thing. Know your body. There’s no one-size-fits-all advice for FM and CFS sufferers. Exercise and a particular med may help some spoonies, but that doesn’t mean it will help YOU.

If you enjoy these interviews and would like to share your own story, please contact me.