This week we are talking with Fibro Warrior Helen Hazelmare of Madison, WI. She’s been living with Fibromyalgia for over 20 years.
When were you diagnosed? How old were you at the time?
In 1993 when I was 18 with Fibromyalgia & Myofascial Pain Syndrome by one of the Student Health doctors at the University I was attending. He told me it was his “best guess” but not to “take it too seriously” because they were “fad diseases”, “typically used as excuses for people to take a month off and go to a spa in warmer climates”. That stigma combined with my so-called friends & loved ones’ shaming sent me into a depressive spiral for many, many years after.
What lead up to your diagnosis (symptoms, dr visits, etc)?
My mother’s horrific medical history had doctors watching me (and me on high alert) from a very early age. I grew up in hospitals, Mayo Clinic, hotels, Lions Eye Institute, and doctors’ offices. Because of this, I have a very abnormal comfort level in these places. I watched my Mom navigate Chronic Fatigue Syndrome, Graves Disease, Fibrocystic breasts, Piaget’s Disease of the Bone, Hypertension, Low-Tension Glaucoma (at the insanely early age of 38), Bipolar Disorder, and Systemic Lupus – and these are just the ones that I’ve known about. Sickness is taken in my families to new levels, as a terrible game of “one-upping” each other and using the control as a form of abuse. My oldest friend (we’ve known each other since we were starting high school) has serious concerns that Munchausen by Proxy was at play while I was a teenager.
As far as what put the pieces together for my diagnosis, I had a really good road map to follow, despite all symptoms being different for people with chronic illnesses. I was symptomatic as far back as I can remember. The main difference in my symptoms was the debilitating, widespread pain. I had migraines, with double vision, that lasted for two weeks. I discovered tender points and trigger points that hurt from clothing. Touch was excruciating. Back then, they used those plunger-type devices to press into patients’ tender points to get a diagnosis, leaving us incapacitated for days or weeks, or even sending us into a whole new pain-flare cycle. Good times.
What was your life like when you originally diagnosed?
In 1993, I was a full-time student. Somehow I managed to not only stay in school, where I was in a highly competitive degree program, but graduate in 4.5 years, making the Honor Roll every semester, and receiving the Outstanding Senior Award in my last year of the program.
How has life and health been in recent years?
I was blessed with an incredible eleven year remission of major symptoms until 2013. Familiar story: a virus that I contracted woke the sleeping beast. This time, the beast brought more friends. Fibromyalgia came back but took a backseat to Systemic Lupus bringing on many major life-threatening symptoms like full-body severe hives, pleurisy, pericarditis, bouts of fever, asthma, etc. I’ve been to the emergency room at least once every month since onset of September 14, 2013, and suffered two silent heart attacks in that time. My predisposition to SLE was an easy connection to make despite cloudy complications of Fibromyalgia.
In 2013, I was working full-time and then some! I was truly trying to do every possible thing I ever dreamed of doing, as quickly as possible. I lived in fear that my remission would end, and I would go back to barely being able to wash my hair. I’d become an ultra-marathoner, an EMT with a local ambulance service, a CNA at a psychiatric hospital, a running coach for a prestigious triathlon chain, and was about to start training for my first Ironman triathlon. The day in September that everything changed, I was running a 50 mile qualifying race to run in the Western States 100 Mile Endurance Race along the coast of California the following year (would’ve been this year, 2014). I packed as much living and service to others into those years before 2013 as humanly possible; fear is an excellent motivator.
Are you married? Children?
I’ve been partnered to an incredible person for the past five years who is loving, supportive, cooperative, and compassionate. Though witnessing my illnesses is the very last thing I wish for them, they are truly a miracle and a great friend as well as a loving and devoted soul mate.
Sadly, we had discussed starting a family (neither of us have children of our own though we’ve helped other families with their kids) right before I became ill again. My becoming mostly housebound has forced us to abandon that plan.
How did your family initially handle your illness?
My family thought my time with Fibromyalgia was a constant play for attention. They took things more seriously initially in 2013 but that has since eroded into exasperation. My urban family is amazingly loving, and help has come from so many with tending to the house, doctor visits, shopping, etc. There is an incredible circle of about forty people who’ve taken turns helping us out – me and my partner, because it’s not just me that needs help.
How has your family/ work situation changed since Fibromyalgia entered your life?
My boundaries have to be exceedingly clear with my family and I’ve had to distance myself from them and limit contact with them. I’ve had to leave stressful jobs, and jobs that were in basements with lots of fluorescent lighting, and jobs where people with invisible illnesses were belittled. I’ve been on disability since 2013 and see no signs of that changing, unfortunately. On good days, I keep up engagement with the outside world by offering Yoga & Therapeutic Movement sessions to friends, survivors, and fellow warriors.
What do you feel is the most challenging aspect of Fibro?
I used to think the most challenging thing was that no one understood, nor cared to understand; it was just another venue to be abused and exploited by everyone (family, friends, coworkers, authority figures, the public). Now I think it’s the unpredictability combined with the invisibility. Now that we live in an age where we’re finally just beginning to be recognized, it makes educating others – even the ones who actually want to learn – so daunting, when we cannot talk about anything concrete. The word “always” so rarely exists with us and our laundry lists of symptoms are so huge and so bizarre. Can you imagine being on the receiving end of all that information as a healthy person? How do you make sense of it? How do you understand our simplest and most common symptom of widespread pain? That it’s not one kind of pain but many all at once, plus there’s an emotional part to it? How do we even begin to convey that to a healthy person?
What other co-existing conditions do you have and how do they impact your Fibromyalgia?
Myofascial Pain Syndrome is still as much a part of my life as Fibromyalgia, and now Lupus, and Raynauds. In the late 1990s, I had bouts of IBS and Sjogrens. I’ve had awful times and been out of work, had an altered lifestyle before but the compounded current diagnosis is a complete breakdown of my life as it was. The addition of Lupus has brought me to my knees & has made my body break down more than I’ve ever known (which is saying something). I also realize that I’m 40 now compared to 18. That makes quite a difference too; harder physically but much easier mentally.
What (if anything) have you found/ done that has improved your symptoms?
While there are too many times when nothing works besides trying to sleep and ride it out, lowering stimulus is essential. Getting dark & quiet, being very particular about who I associate with and what projects I give my energy to (and how I allot that energy), and practicing yoga and meditation regularly are powerful aids.
How open are you with friends & family about your illness & symptoms?
Now, I’m very open and send out updates of the pain and illness roller coaster to my urban family. It’s taken a bit to get used to being loved and supported, and I’m grateful the people I care deeply for are also deeply engaged in my well-being.
What is the best advice you’ve received about Fibromyalgia?
You absolutely MUST learn how to ask for help. And then actually do it.
What was the worst advice that you followed?
“Maybe you should try to exhaust yourself so you can sleep at night.” Yeah, that was definitely stupid.
What is your favorite way to cope with your life as a spoonie?
HUMOR! I am totally at my lowest of low and most devastated when I get stripped of my humor. Maybe it’s my Coyote Totem, but I feel the need to make jokes, give stuff silly names, and laugh at the sheer ridiculousness of our plights when ever I can. Like the bit of feeling heroic at having taken a shower, only to discover hours later when running a hand through your hair that the shampoo’s still on your head. Blech!
Ok, I have to ask – Coyote Totum?
Totems are animal spirits that guide our path in the world and are also our great teachers. Coyote is the Trickster, the practical joker. Coyote is full of ideas and plans and stories. Coyote is a Doer, an animal of action and playfulness and inquisitiveness. But the greatest lesson Coyote teaches is to never take anything, including life and ourselves, too seriously.
What is one thing you’ve learned about yourself since your diagnosis?
I am naturally very introverted. 🙂 I want more than anything to practice healthcare that doesn’t destroy me in the process. Becoming a Yoga practitioner and a tiny blip of an invisible illness sharer/advocate/educator is accomplishing this.
Now that you’ve gotten to know Helen a bit, be sure to connect with her on Facebook and Twitter. She has two groups on Facebook – Clydesdale Yoga and Adventures in Spoontown and you can find her as @Weep4Humanity on Twitter, and she welcomes your emails.
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