How My Life Has Changed Since I Developed ME/CFS


When I was me…

I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day.

When I was me…

I worked out. Sweaty, hardcore workouts that made you feel like you were going to collapse but brought a huge sense of success when completed.

When I was me…

I had a ton of friends. We hiked, went out, had drinks, danced and we closed the bar down on occasion.

When I was me…

I shopped for fun new clothes and new, but not needed, boots. And oh so many scented candles!

When I was me…

I sought out crazy adventures. Ones that scared me a little and thrilled me a lot.

Now it’s all about ME… myalgic encephalomyelitis, a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

If I muster up a smile to greet you, I’m thrilled I managed that much. I don’t laugh anymore and my memory loss is so bad I can’t remember something intentionally silly to say to you. The joke is on me now.

Now it’s all about ME…

A workout now is my morning shower. I lay on the couch hour after hour. If I’m not on the couch, I literally crave the moment when I can be resting back on it.

Now it’s all about ME…

I’ve lost so many friends simply because I am sick. But not all, the best of the best stayed and new ones came – all are my biggest supporters and lifelines! But there are no hikes or happy hours and I’m in bed long before the bar closes.

Now it’s all about ME…

I’m too tired to shop. I leave my house so little I really don’t need new clothes anyway. At least I can order the candles online. Thank goodness!

Now it’s all about ME…

A crazy adventure is thinking I might leave the house without planning at least day in advance. I couldn’t handle a thrill if it came my way (luckily little thrills find their way to my couch).

There is definitely still an existing self though. But it’s not the me I’ve known, grown and loved for 45 years. It’s like meeting yourself for the first time when ME strikes. You have to learn what this stranger can and can’t do. You must learn quick because missteps are costly. However, this new me has talents I didn’t realize, inner strength I didn’t know the depths of and also a lot of challenges I never dreamed I could overcome and would have to succumb to.

Taking it all a step back though, I think we are all constantly evolving. For some of us, at times it’s initiated by a force beyond ourselves. Like ME for me. For others it’s through actively selecting a new way of life.

In my case, with ME, I’ve decided to embrace this new self. I can’t stop the ME; I would be wasting my time and precious energy if I tried to fight it. It’s incurable. For now, at least. Instead I choose to look at this new self as a gift, that every day I get to unwrap a little more, reveal a little more of who this new self is. No denying that every day has its challenges, but this new self, well, she’s pretty cool. And I love her too.

So from ME to you: Whatever place you are in and however or why you got there, I really think the key is to support each other as we evolve. Together we can make it. Alone we can make it. But together is so, so much easier.

And with that I give a huge shoutout to my family, friends and fellow ME warriors for all their love and endless support. You make the incredibly hard easier each day you are in my life.

Getty Image by as3d


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