DAILY LIVING & MOBILITY

Finding Meaning in the M.E.aningless - Living With ME/CFS

Thea Kristine Refsdal

How I Get Through Life With a Chronic Illness

Hi from Norway! My name is Thea Kristine Refsdal, and I have had ME/CFS since the age of 13. The last eight years have been a living hell. I’ve been through all kinds of different medical tests for years before finally receiving a diagnosis. You name a test, I’ve taken it. My poop has even been sent to Germany AND the United States! Well, enough about that…

ME/CFS is often referred to as a “living death”. People lie in bed in dark rooms in excruciating pain, unable to speak, or even just to turn around in bed. I’ve been there. But this illness is a hell of a roller-coaster ride. Symptoms flare up and down. There are somewhat “good” times but mostly bad times. Currently, most of my time is spent in bed, the sofa or… on the floor, to get some variation in my days. I’m mostly housebound, and I spend more time with my cat (I have a real one) than anyone else. Months go by between the times I see my friends and other people than my family… and my cat.

Before I became ill, I was very active, but I can’t be that now. Luckily, I love drawing (like the cat on my picture), painting and making music. But most days, I can’t. One of those days, a few years ago, I was lying in bed thinking: “There must be something I can do! Something!”  “Write. Write a story for your little sister” suddenly popped up in my head. So, I ended up writing a children’s story. Surprisingly, I found out that the one I truly was writing for, was me. Writing became a sort of medicine. It gave me a reason to get up. It helped me contribute with something meaningful as well as focusing on something other than my illness. The characters became my friends. They were - and are - always there for me. When I can’t do more than just lie in bed, I imagine scenes to write about. I’m currently working on a follow-up story to the completed one. Luckily I have a vivid imagination, and in my mind, I can do anything!  However, sometimes it’s impossible to even think about the story, due to pain or depression. But I do the best I can every day to find things to be grateful for and to laugh about. When one has a chronic illness, one tends to experience a few comical situations at times.

That’s why I’m planning do a little stand up show in my hometown about just that; growing up with a chronic illness, and weird situations I’ve gotten myself into over the years because of that. Hopefully one day, I’ll be able to since I love joking around.

Living with a chronic illness is beyond challenging. In many ways, it takes your life away. You get lonely. Angry. Hopeless. That’s why it is crucial to try to find meaning in the meaningless. Lately, I’ve found meaning in connecting with people in similar situations, through Instagram, or the Internet and read inspiring stories about all of you out there that struggle with insurmountable obstacles. And then, hope comes back again. You lift my spirit, guys! I love to read your stories and connect with you wonderful people – both in spirit and social media.

Thank you, YOOCAN!

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