Lizz is a 25 year old writer and journalist from Buffalo NY, that I met via Twitter. (Have you noticed a trend lately, there are a lot of awesome spoonies on twitter). She shares her life on her blog, The Keystroke Inkwell.
When were you diagnosed?
I was diagnosed last May, I was 25 years old.
What lead up to your diagnosis?
My journey toward diagnosis is a long and frustrating one. I first began experiencing symptoms in 2007, although I didn’t realize what it was at the time. Because my Fibromyalgia first manifested atypically, it took a long time for the medical community to catch on to what was going on. At first, I was experiencing muscle weakness and dizziness, whether sitting, standing or lying down, that did not change with diet or elevation changes. When I first noticed my symptoms I couldn’t run as far or lift as much at the gym. Soon I became dizzy and fatigued just walking across campus. One day I fainted on my way to cover a story and ended up hospitalized for two days. Subsequently, I received a full neurological and cardiac work-up, as well as a CT scan, MRI, EKG, and multiple physical exams. Doctors chalked it up to a one-time syncope and a sodium deficiency, and sent me on my way.
My symptoms came and went as I graduated from college and came back to my hometown for work. As I began my first job as a PR professional, I attributed my fatigue and persistent muscle aches to the stress and long hours of my profession. I assumed my exhaustion was a psychological side effect of the transition into work life, and mostly wrote it off.
When I moved to London for graduate school, I thought that walking around the city for a few hours left me dizzy, nauseated and fatigued enough to need a lie-down because it was a new, stimulating place. I rarely thought something might actually be wrong with me.
It wasn’t until I started working for a newspaper, my current position, that I resumed pursuing a diagnosis with renewed zeal. Undertaking a low-residency graduate school program while working full-time in a fast-paced environment exacerbated my symptoms enough to make me seek treatment in order to continue doing my job and, more importantly, to live my life. When it started, my hands would shoot pins and needles up my aching arms, my shoulders and back would be tender and sore, and my knees would hardly allow me to sit at an hour-long stretch before shooting pains would start traveling up and down my thighs. And most troubling, I would get dizzy and unsteady on my feet when I went to cover stories and events. I had an EEG on my hands, to rule out carpal tunnel and X-rays on my knees to rule out injury. Both came back clean. Through it all, I found myself frequently wiped out after a routine day at work, exhausted and “foggy-brained” enough to make me worry about my ability to do my job or finish my degree.
Finally, in 2012, I went to my primary doctor who said, “You’re too young to be in this much pain,” and sent me to a rheumatologist. It took some time to secure the appointment, but after a 15-minute examination, including questions about my lifestyle, medical history and a trigger-point exam, he diagnosed me with fibromyalgia.
What is your Family life like? How did your family initially handle your illness?
I was, and still am, living with my parents for financial reasons. My family and I don’t talk about fibromyalgia much, although I told them about the diagnosis, when it happened.
How has your family/ work situation changed since Fibromyalgia entered your life?
I am still working at that same paper, now as editor, and have since finished my degree. I have had to learn to pace myself at work, more so than before my diagnosis. Since I was experiencing symptoms right along, the diagnosis of “fibro” has allowed me to manage my workflow and learn what steps I need to take, in order to avoid making the pain and fatigue worse. It’s still a work in progress and probably always will be, but I’ve found that awareness is the best tool.
My family life has not changed in any measurable way, except that my boyfriend (who has been a wonderful, supportive partner throughout the journey) is an amazing support system, in making sure that I feel comfortable doing what I can and talking to him about how I feel, which is essential to managing the disease.
What do you feel is the most challenging aspect of Fibro?
For me, the most challenging thing is trying to maintain my work and life balance and remember to respect my limitations. Learning my body’s ever-changing abilities has been a challenge, and is one that I am always adjusting to. It’s been difficult for me to accept that I don’t have the same stamina or endurance that I had when I was younger, or that things like a full work day and social engagements take more of a toll on me than on my able-bodied friends. I’m fortunate that I’ve been able to maintain essentially the same lifestyle as before my diagnosis, with necessary modifications and awareness. Sometimes, it is hard to remember to pace myself and slow down even before I start to feel sick, which is contrary to my Type A personality at times, but I’m learning that I will feel better if I do, in the long run. Accepting that I’m not “superwoman” is probably the hardest, for me.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have also been diagnosed with vasovagal syncope, so my body adjusts poorly to position changes, like standing up, turning around or sitting down. If I stand up or turn too quickly, I’m liable to black out. This can be tiring, since my body is constantly trying to level itself out, which I think does contribute to increased fatigue, if I’m not careful and aware. I also have exczema which, whether there’s a medical basis for it or not, does seem to contribute to the tenderness associated with fibro. If I have an exczema flare, you can bet that part of my body will be tingly or tender to the touch, as well. It’s all related, in my mind.
What (if anything) have you found/ done that has improved your symptoms?
Less than a year into this journey, I’m still working on managing my symptoms. I find that the most effective tool, so far, is being careful not to do too much, too fast. My natural inclination is to go-go-go, but if I do, I’m likely to be in more pain, more fatigued later. If I remember to “check in” with myself regularly about how I’m feeling, I have a better time and later, less pain and fatigue.
How open are you with friends & family about your illness & symptoms?
I’ve been selective about who I share my symptoms with, because there is such a stigma surrounding chronic, invisible illness in our society. Because I don’t “look sick,” people are inclined to believe I’m exaggerating or faking my symptoms, so it’s often easier just not to discuss them. I also don’t want to be “the sick friend” when I’m feeling well, because frankly, I’m a bit of an introvert who doesn’t really like that kind of attention. Since chronic pain and fatigue are such a constant part of my life, it’s often easier not to make them even more infiltrative by discussing them. I have been learning, however, the importance of support, and am trying to be more open, as I realize the value of having people to lean on, when I’m feeling ill or down and out about it.
What is the best advice you’ve received regarding Fibromyalgia?The spoon theory was a lifesaver, when I first discovered it. Before that, I had been struggling to find a good way to describe how I was feeling to people who didn’t have that experience as a reference point. It can be hard to talk about chronic pain and fatigue to people who don’t have them, because it’s not something we generally talk about or have language for, culturally speaking. I’ve used it many times, since I first read it, and it’s been a wonderful resource in communicating about my disease.
What was the worst advice that you followed?
While this doesn’t qualify as advice exactly, I spent a lot of time, when I was first diagnosed, trolling online message boards and communities, looking for people who could relate to what I was struggling to accept as a new part of my life. Many of those were very negative, “Debbie Downer” places, where I read blogs by a lot of people who were very bitter and angry at the disease and what it had done to their lives. I found that reading those things made me feel the same way, but that wallowing in self-pity was not helpful or constructive. For me, I have found that directing my energies toward getting the most out of life, in the best way that I can, is a better strategy than commiserating about everything I can’tdo and dragging my mentality further into the doldrums.
What is your favorite way to cope with your life as a spoonie?
I love creating and participating in positive, life-affirming communities like some I’ve found on twitter and social media. I’m also passionate about advocacy for people with disabilities and people who live with pain, because there’s just not enough research into it, right now.
At first, it frustrated me that, as a relatively young “spoonie,” I was enduring more health challenges than the rest of my peers. It was depressing to see my friends dancing salsa (something my syncope won’t allow) and jetting off to the mall for a day of shopping without a second thought. And although I still have my days of wallowing in “poor me syndrome,” I’ve found a wonderful community of people who lift each other up and discuss advocacy and life challenge issues that are unique to people in our situation. It’s affirming to find others who experience and care about the same things, and I’ve enjoyed discussing our shared life challenges and how we’re all working to live with and through them.
What is one thing you’ve learned about yourself since your diagnosis?
I used to define myself by what I could do. I was a runner, a dancer, an actress, a musician, a writer; you get the idea. But after my body began to rebel, I had to rethink my self-conceptualization. Now, I think of myself more holistically: as not just the sum of the art I produce, the work I do or the accomplishments I collect like a personal-best Magpie, but as a human being with a spirit and a soul, as well. I’ve learned to take care of all of me, including the vulnerable part that needs to lie on the couch and rest, sometimes. I’ve learned that there’s strength in vulnerability, in asking for help and most of all, accepting it. I’ve learned that acceptance doesn’t mean surrender, but can be the first step on creating a beautiful, full life.
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