As we approach ME/CFS Awareness Day on May 12, we reflect on the life-altering impact of this debilitating disease.
Characterized by profound fatigue, cognitive impairment, pain, and a range of other disabling symptoms, ME/CFS often leaves people housebound or bedbound—unable to take part in activities that others often take for granted. Despite affecting millions worldwide, ME/CFS remains widely underrecognized and misunderstood.
Today, we share the story of FFION, an OMF community member finding purpose through poetry, whose life has been drastically altered by ME/CFS and Fibromyalgia.
Support our May Momentum campaign by donating today. You are the driving force behind our efforts to transform the lives of those affected by ME/CFS.
FFION's Story
FFION’s life changed profoundly after she developed ME/CFS and Fibromyalgia following a viral infection in 2006. More recently, she experienced a general deterioration after receiving the COVID vaccine, which exacerbated her existing symptoms and triggered new challenges.
Before becoming ill, FFION had a demanding career and led a full, active life. She enjoyed a wide range of interests, including walking, opera, film, theatre, concerts, socializing, gardening, and especially traveling. She holds a degree in English and French, once spoke fluent French, and taught herself conversational German. She was also able to communicate while traveling in Italy, Spain, and Greece.
Today, however, even a short conversation in English can be difficult for her on some days.
When I became housebound with ME and FM , and very restricted as to what I could do in the home, I had to find things I could do; ideally, something creative, charitable and connecting. Now, my “activities”, (I have brief “activity breaks” in between rests!), are writing poetry and making cards.
I’ve always loved writing, but hadn’t written poetry. But, a few years ago, poems started to pour out, starting with poems about living with ME and FM and then other topics, including “Nature”, “Children”, “Animals”, “Gratitude”, “Humor” – ffionoriginalpoems.blogspot.com.
I emailed OMF with thanks for their work – would they like cards to send my thank you cards to people in the OMF Community? Yes!
I hope my cards tell ME people they are not forgotten; and my ME poems share that, whatever emotion they are experiencing – and ME gives rise to a maelstrom of emotions, many distressing and negative – they are not alone and that millions of people worldwide understand.
For me personally, poetry and card-making have been life-savers – creative, charitable and connecting! – and I am delighted that my cards and poems give pleasure to ME people.
FFION’s story highlights the urgent need for greater awareness, research, and support for those living with ME/CFS. Let’s make this ME/CFS Awareness Month matter.
Join our May Momentum campaign and raise your voice louder than ever before. Support ME/CFS research by donating, sharing FFION’s story, and spreading the word about this life-altering disease.
