What I Miss About My Life Before ME/CFS


I am getting a pair of shoes ready to send to this year’s Millions Missing event. I have been asked to attach a tag with the following information: my name, how long I have been ill and what I’m missing. The “what I’m missing” part got me thinking about the life I have left behind and my emotions hit me like a sledgehammer. So what do I miss?

I miss the simple things – the sun on my face, the breeze blowing in my hair. I miss walking to the local shops just to browse. I miss meeting up for coffee with my best friends and putting the world to rights. I miss sitting in the park watching everybody rush by as they go about their busy lives.

I miss growing my own vegetables – watching a plant grow from seed is so satisfying. I miss nights out with my husband. I miss work. I miss having a purpose in life. I miss being needed. I miss the seaside – the salty smell of the fresh breeze. I miss family gatherings – weddings, birthdays, even funerals. I miss crafting – there is something so rewarding about creating something out of your own imagination. I miss shopping. I miss buying clothes and shoes just because they are pretty – not practical. I miss long relaxing baths.

I miss getting drunk with my friends. I miss music – loud gigs where you have to shout to be heard, even when you are standing next to each other. I miss getting dressed up, doing my hair and makeup – I miss feeling pretty. I miss nature – watching birds bobbing around on the ground looking for food. I miss the vivid colors and the sheer beauty of the world. I miss my Mum, she also has ME/CFS and fibromyalgia so we hardly ever see each other. I miss cooking and baking. I miss caring for my husband and spoiling him with treats I have baked. I miss the satisfaction of a clean house. I miss my tidy house – I hate the clutter I now live in.

I miss traveling – the excitement of discovering new places. I miss making plans. I miss talking for hours about everything and nothing. I miss singing and dancing around the house. I miss laughing so hard my cheeks ache. I miss being spontaneous and carefree – not having to worry about the payback from my adventures.

ME/CFS has stolen so much from me but I have also gained a lot too. Being ill has forced me to pause and think. My life was so hectic and busy before, I didn’t have time to enjoy or appreciate the small things. I have learned patience and mindfulness. I am thankful for every smile and every happy moment. I have gained so many friends online who have supported me through the tough times. I truly appreciate my dear friends who have stuck by me through everything life has thrown at me, and my life is enriched by their presence. My husband and I are closer than we have ever been and I have learned to appreciate everything about him. I have gained a better understanding of me and ME. I have found my voice and I will continue to write as long as there is someone listening. I am stronger because of what I have endured. Take care.

Getty Image by Dziggyfoto


Find this story helpful? Share it with someone you care about.


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

small green plant growing out of a crack in the sidewalk

The Feelings #MeToo Stirs in Me as a Woman With Chronic Illness

I am an imposter in #MeToo land. I have not been sexually assaulted and I have no right to a voice. That’s my “shut up” voice. It takes awareness and self-compassion to stop her taking over. But the reason I have a loud self silencer in my head is also the exact reason why I [...]
black and white photo of a conductor

Bach and Body Aches: How Classical Music Helps Me Escape My Symptoms

My university has a big thing for Johann Sebastian Bach. For 86 years, we’ve hosted a festival in honor of the classical music giant; it has always led to the performance of a major Bach work (or, on two occasions, a related composer), but these days it also includes scholarly lectures, food trucks and a [...]

The Difficulty of Staying Awake With ME/CFS

My roommate once lovingly described me as “a kind and sleepy human.” I have myalgic encephalomyelitis. It should be no surprise that a condition also known as chronic fatigue syndrome would lead those who live with it to be extra tired, but sleepiness is practically one of my personality traits. Though I didn’t begin experiencing [...]
side profile of a woman holding her face in her hands

When the Physical Symptoms of My Illness Mimic a Panic Attack

I have known for many years that my anxiety and depression don’t just affect my mental health but also cause physical symptoms like fatigue, pain and palpitations. But it wasn’t until my physical health deteriorated that I realized the opposite was also true. For most of my life doctors have blamed my physical symptoms on [...]