Why I'm Running for ME/CFS

I was diagnosed with chronic fatigue syndrome in October of 2013, after a year and a half of doctor appointments, being probed and prodded, filling out form after form after form… and many, many spells of Google searches and occasional bouts of hypochondria. I was at college when flu-like symptoms hit me like a sledgehammer. And my local doctors were at a loss – there was nothing visibly “wrong” with me. They suggested I may be depressed, under the weather or stressed from living the life of a university student completing a master’s.

As many in my position have probably felt, I started losing faith in the medical establishment as well as doubting my own sanity. Having always strived to work hard, do my best and, in recent years, turn into the best runner the world had ever seen, my sudden lack of energy had me wondering if I’d slept through a personality transplant and turned into a lazy leech. I went from running 20 kilometers just for fun to losing my breath from walking up half a flight of stairs. My short-lived dream of taking the world by storm through running (I was going to run the length of continents and enter 10 marathons a year) was in jeopardy and so was my livelihood.

I finished my master’s degree and moved on to the world of working women – I had rent to pay, a motorbike to maintain and trips to save up for. The only problem was that I started getting sicker. The flu-like symptoms were outdoing themselves, transforming me into a person who stuttered, couldn’t count to 10, stopped running and even exercising every day. I wanted to have more than a five-minute conversation with my friends and family. The only person I could spend time with was my boyfriend – and that was because we lived together. My parents were worried, my friends thought they had lost me and I was petrified of what was to come.

And so I found myself, another sick day claimed, sitting in a doctor’s office thinking that I would, once again, be told there was nothing wrong with me. My headaches were a figment of my imagination, I didn’t have a cold, my tonsils were not swollen and my fatigue (constant bone-aching fatigue) was probably due to lack of sleep and depression. A steely resolve settled over me – I was not going to let the doctor walk all over me…again.

I did start crying that session…but it was out of relief. I had a diagnosis. The past year and a half of testing and agony had managed to result in the diagnosis of chronic fatigue syndrome – followed by the caution: “We don’t know how to fix it, what causes it or how you can get better.” I didn’t care – there was a name for what was happening to my body and my mind. I could do research, I could hunt for answers and most of all, I wasn’t making it up!

And so began the long and arduous struggle to get better, to get back to my dreams, to start running again. Thanks to the Chronic Fatigue Clinic in Edinburgh I learned about pacing myself, learning to say no and learning about what I could and couldn’t do.

I made life-altering changes – I changed my job, started talking to family and friends and started walking. Walking led to jogging a few hundred meters at a time. Slowly a hundred meters turned to a kilometer and just kept on going. I started being able to stretch my legs out to sprint, feeling the steady beat of my feet pounding against the ground.

I am still on the road to recovery but am firmly on my way to being the strong woman I know myself to be. I couldn’t have done it without the support of family, friends, understanding doctors who no longer see ME/CFS as “Yuppie Fever” and my loving partner. I have the support structure in place to help me get better and get back on track for running across a continent. Or two.

Not everyone out there has been as lucky and had the same support structure to help them out. Everyone needs someone to stand by them and let them know it is real, it is hard and there is something you can do about it. This is why I am here. I can help make a change. I have not let this debilitating autoimmune disease get the better of me and more people need to know about the impact it has not only on the person, but on their families and friends.

This is why I am running for ME/CFS. I am running because it is my passion, my dream and a medium to show we can get better. I ask for those around me to help through support, understanding and/or spreading the word that ME/CFS exists and needs the attention it deserves.

I am pledging to run one race a year to raise both awareness and funds for ME/CFS. Together we can make a difference, show we care and be part of the support structure for those in need.

#RunningForMECFS

This post originally appeared on Marlene’s Running for ME/CFS Facebook page.

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