This was originally posted on my graphic design website back in April, 2013. I am in the process of creating a series of posts about how I became “unbroken;” how I healed from my chronic illnesses. But first, I’ll share this one:
Being that I am sitting in a hotel room in Charlotte, NC for my annual visit to my fibromyalgia/chronic fatigue specialist AND that May is Fibromyalgia Awareness Month (what, you hadn’t heard?), I figured I’d do a little blog post about living with this diagnosis.
My journey with fibro/cfs (Fibromyalgia/Chronic Fatigue/Myalgic Encephalopathy) began 11 years ago when I was rear-ended on the way to work. Long story short, I was hit pretty hard and pushed underneath the car in front of me so their back wheels were on my roof. It was terrifying. I drove a little “tupperware car” Saturn Sport Coupe and I had no idea if it’s frame was going to collapse below the weight of the Chevy Malibu that was suddenly imposed upon me. It was definitely one of those moments where you wonder, “Is this how it is going to end?” I ended up with some pretty intense pain from my injuries, but was fortunate to be able to crawl out the window of my car and walk away.
Fast-forward several years and I had the most bizarre constellation of symptoms. I was still dealing with a decent amount of daily pain in my back and neck, but I was also experiencing migraines 6/7 days of the week. I developed TMJ and my skin became so sensitive it hurt when the wind would blow against it. My eyes would often have difficulty finding focus and depth of field in a large space, and when I got really overwhelmed, they would spasm and rapidly twitch back and forth. I couldn’t sleep at night, and then would fall asleep at work. I never felt like I could get a good night’s sleep, even if I had slept for 8-10 hours. I had difficulty articulating my thoughts and even more difficulty managing multiple tasks/projects at once. My skin would itch, my nose and knees would sometimes go numb, and my hands and feet would always throb and feel swollen in the morning. It hurt to put weight on my feet and felt like I was walking on pins and needles every single morning. I would get so tired that my entire body burned—simple tasks like picking up a glass of water would sometimes make my muscles fatigue as if I had just completed a strenuous workout. And, finally, I had terrible abdominal and chest pain that would sometimes hurt so much I couldn’t stand up straight or take a deep breath (which later I discovered was due to IBS and food sensitivities). Last time I checked, I have battled at least 35 distinct symptoms. Each day was different—some days I would have five symptoms, some days I would have 10, some days I would only have one or two. I never knew when I would be able to get up in the morning or if I was going to make it through the day.
I grew up as a highly competitive gymnast, so I was trained to always push through pain and just work a little harder to achieve anything I set my mind to. The biggest thing I have had to learn through the past decade is that I have to work harder at doing less, not more. I have to constantly ask for help. This is the hardest thing I have ever had to do as it goes against every fiber of my being. It makes me feel broken, incapable, and defeated. It is absolutely impossible to explain to someone who doesn’t have fibromyalgia and chronic fatigue (the two syndromes are typically present together) what it is like to
live, er, feel trapped, inside my body.
It would be easy to give up, and honestly, it is often quite tempting. I’ve been on this chronic illness journey for pretty much all of my adult life and it has cost me everything that the world would call stability. I must constantly remind myself that God will not abandon me, thus He must be up to something here. There must be something good that will come out of this. I even have this art, designed by a friend of mine Jim LePage, hanging on my living room wall that reads:
“I will repay you for the years the locusts have eaten.”
I need that reminder. Every. single. day. I also need to remember that I am not broken and I am not past the point of repair. I am simply on a journey, albeit a difficult one. Something more lies ahead. I have made progress over these years. Sometimes it is hard for me to see that, but the indicators are certainly there. On the hardest of days, I cling to those indicators—they give me hope and motivation to keep putting one foot in front of the other.
If you happen to know someone with chronic illness, be it fibromyalgia/chronic fatigue, or something other (often hidden) disability, give them grace. For most of us, our lives feel like they are not our own. We will let you down. We will not carry “our fair share” or “our weight” in most relationships, but I promise you we are carrying weight 24/7. If you happen to suffer from fibro/chronic fatigue (or are in the midst of recovering from an serious injury or trauma), my best advice to you is to give yourself grace. Take time to rest. Then take more time to rest. Surround yourself with supportive people that love you regardless of how well they can understand you or how much you can do for them. And never give up.
You are not broken.