The Mighty Logo

How I’m Challenging the Feeling of Another Year Wasted With Chronic Fatigue Syndrome

The most helpful emails in health
Browse our free newsletters

I turned 44 recently and my birthday has thrown up a whole mix of emotions. It’s a brutal reminder that I have lost yet another year to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

I live with a severe form of ME/CFS. I’m housebound, virtually bedbound and my life is greatly restricted due to this debilitating disease.

The forced isolation I find myself living in means I feel an odd disconnection from the outside world. It’s like my life is on hold, like time is frozen. Rather than progressing, I’m forced to relive an almost groundhog day existence — each day almost identical to the next.

But, of course, the world outside goes on without me. My friends and family’s lives continue unobstructed, unhindered and unaffected by the ME monster.

It feels like I am being held hostage by my condition and I’m defenseless to stop these wasted years passing me by. When you’re ill, birthdays are a reminder of all the things you’ve missed. Time you can never get back.

Another year spent in isolation from the outside world.

Another year spent in pain.

Another year unable to do the simplest tasks.

Another year I’ve been unable to do the things I love.

Another year spent without the social contact I desperately crave.

Another year being denied help from medical professionals.

Another year without my independence.

Another year relying on other people’s care and generosity.

Another year unable to follow my dreams.

Another year has passed me by and I continue to live my life from my bed.

With each passing year, my hope of making a recovery diminishes. This isn’t me being depressed or pessimistic; sadly, it’s my reality. But I refuse to give up. I refuse to let ME/CFS steal my hope.

Over the past couple of years, I have come to a place of acceptance — it hasn’t been easy. I now give myself permission to embrace the truths of my health issues without guilt or self-blame.

Rather than battling against my illness and my own body, I have decided to make the most of the life I have. I refuse to let any more years pass me by desperately wishing I was well. I refuse to wait until I am well before I start to live my life. Instead, I will find ways to enjoy my limited life, while I patiently wait for my body to heal and the medical community to catch up.

So instead of focusing on what I am missing out on, and my lost years — this year, I want to celebrate my achievements. This year, I want to acknowledge my victories. This year, I want to shout from the rooftops: “I survived!”

This year wasn’t “lost” to ME/CFS. This year was another year where:

Despite ME/CFS, I continued to make improvements in my health. I am winning the battle, even if the progress is slow.

Despite ME/CFS, I have spent precious time with loved ones.

Despite ME/CFS, I have laughed.

Despite ME/CFS, I made lots of new friends online.

Despite ME/CFS, I sat outside for a few precious moments during the summer.

Despite ME/CFS, I won the battle to have a smear test at home, and hopefully paved the way for others to get access too.

Despite ME/CFS, I have been able to express myself through my writing, and hopefully touched other people’s lives too.

Despite ME/CFS, I continue to raise awareness and hold onto hope of a better future.

Despite ME/CFS, my life is worth living.

Despite ME/CFS, I will not give up on me.

Despite ME/CFS, my life is still full of hope.

Despite ME/CFS, I achieved so much.

Despite ME/CFS, I survived!

So, despite ME/CFS, I will continue to live my life. I will continue to embrace the unpredictable mess that is my reality. I will take one day at a time. I will choose my battles and let go of the ones that serve no purpose except to exhaust me. I will celebrate even the smallest achievements. I will laugh when I can and cry when I need to. I will learn to accept what I cannot control and work my hardest to change what I can. I will appreciate each day, and each year that passes, because my future is so uncertain.

I’ve come a hell of a long way and I’m bloody proud of that. Yes, I would much prefer to be living my life outside, in the real world, without the limitations placed on me by my ill health. But, chronic illness works in mysterious ways and for now, I’m making the most of what I have.

So for my birthday this year, and for years to come, I will take the opportunity to reflect on all I’ve made it through. I will embrace and celebrate my life, even though it isn’t what I hoped or dreamed it would be — after all, it’s my life and the only one I have.

If, like me, you live with a chronic illness and find birthdays a depressing reminder of what you are missing out on, your lost years — please know that just by surviving, you are achieving an incredible feat. Please find a way to celebrate all your achievements and victories, however small. Please know you are not alone.

I know life is hard, but it is possible to live a worthwhile life with purpose and meaning despite chronic illness. You are incredible, never forget that. Take care.

Photo by Ann Danilina on Unsplash

Originally published: May 6, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home