Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia.

Ffion’s #MayMomentum Story

It’s a Small World

I have a degree in English and French. I love languages, literature, writing, art, nature, and card-making!  Before ME / CFS and Fibromyalgia hit following a viral infection in 2007, I also loved opera, film, theatre, concerts, walking, socializing and, especially, travelling.  But my life changed totally after I was diagnosed with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and Fibromyalgia (FM).

I’ve always loved writing, but Ted Hughes said: “Poetry needs a reason”.  It would appear ME / CFS is my reason because, a couple of years ago, poems started to pour out!

It started with poems about living with ME / CFS.  I sent these to a few good friends, who were all very complimentary.  But, they also said, whilst their understanding of what it must be like to live with ME / CFS was enhanced, they were also grateful that most of the poems had some humor and lightness, wit or irony!  As they said: “It’s such a terrible disease, and people have such an awful time, it would be too unremittingly sad if there was not a touch of light in your poetry somewhere”.

I then started writing poems on other topics – not just on “ME / CFS, FM and Me”, but also on “Nature”, “Children”, “Animals”, “Gratitude”, “Humor” etc…

And then, one day, I came across OMF – I still can’t remember when or how.  I sent an EMail, just to say, “Thank you for all you are doing”.  A team member replied, we got to chatting, and I sent her a funny poem.  She loved it and said: “You can be our OMF Poet Laureate”! 

Thus it was, in early 2018, that my husband decided to finally set up a Poetry Website for me and I went “live” ….  Do visit my Poetry Website – over 200 poems are on there now, and I’m adding more all the time, so I think there’s something for everyone:

Alongside poetry, I used to make cards for friends’ birthdays. But, once I became very largely housebound, their birthdays weren’t keeping up with my output!  So I started making cards to donate to charities. Now I only make them for OMF, so they can be sent to homebound patients and financial donors. 

It’s a joy for me, because it’s very creative and can be done in my own time, when I’m able. I try very hard to ensure that every card is different, and unique. And, I’m delighted to say, OMF, patients and donors love them, and give wonderful feedback. Read more about my cards for OMF Here. I was delighted when, in August 2019, OMF appointed me a Community Ambassador.  Thank you, OMF.

Poetry and card-making have been life-savers. I can do them as and when I am able and, as my bed is only a couple of feet from my desk, the commute is ideal!

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