CREATIVE VOICES
by East Staffs Fibro Friends
East Staffs Fibro Friends
Creative Voices is a collection of original poetry and gelli prints created by members of the Fibro Friends community group, with support and inspiration from professional artists.
Angela
Caroline
Clayton
Karen
Louisa
Margaret
Pat
Shahzana
Shaun
Vicky
“It’s been a real priviledge to see individuals in the group develop their skills and grow in confidence. The support they give to each other is a delight to see. Proof that amazing things happen when community come together”
Ian Leech, Support Staffordshire Community Officer
Thank you to everyone who supported this project:
Emma Sykes, Burton Albion Community Trust and their team of Social Prescribing Link Workers, Suzanne Syson, Support Staffordshire Community Officers Ian Leech and Gulsoom Aslam, The Brewhouse Arts Centre and their Audience and Participation Officer Charlie Birtles.
CREATIVE VOICES
Pain, poetry, prints and living with Fibromyalgia.
Artwork and Poetry by East Staffs Fibro Friends. Printmaking workshops led by Rebecca Jarman. Poetry and Creative Writing workshops led by Dawn Jutton. Publication by People Express.
Page 3 Introduction
Page 4 Section 1:
When taming the beast isn’t an option
Page 14 Section 2: Screams of consciousness
Page 23 Section 3:
Don’t tell me it’s all in my head
Page 37 Artist credits
Page 38 More about the project
Page 39 Our voice
Images from the creative workshops with East Staffs Fibro Friends, hosted at the Brewhouse Arts Centre, Burton upon Trent.
Introduction
Welcome to Creative Voices, a collection of prints and poetry created by people living with Fibromyalgia. For many, this was their first time exploring printing or creative workshops. The artwork and words reflect their emotions, experiences, and resilience.
Fibromyalgia diagnoses have risen sharply in recent years, yet awareness and resources remain limited. Many people with ‘fibro’ feel misunderstood, as its invisible pain varies daily.
Supported by an Engagement Grant from the South East Staffordshire VCSE Alliance, People Express piloted this project to explore the benefits of participatory creative activities for people with the condition. In collaboration with health and community partners, we held 12 workshops led by painter and printmaker Rebecca Jarman, who also has fibro, and Staffordshire Poet Laureate (2022-2024) Dawn Jutton.
Participants described emotional and mental health benefits, finding creative ways to express themselves and share ideas for better care and support. For some participants, attending sessions represented a ‘significant positive change’, for example when they had not been out of the house for over a year, experiencing high social anxiety about meeting new people, or feeling isolated as friends/families/medical staff were dismissive of their condition.
“I had never done poetry before—maybe at school—but never written it myself. I didn’t think I was up to it. Then Dawn said, ‘Write what’s in your head; there’s no right or wrong.’ It became a release for the dark thoughts about my fibro and how it restricted my independence.” Pat
We hope Creative Voices inspires others to embrace creativity, try new things, and connect with supportive communities. If you or someone you know is living with Fibromyalgia, please share this booklet—it’s a reminder that no one has to face fibro alone.
For more details about the project please contact People Express www.people-express.org.uk
Section 1: When taming the beast isn’t an option
by East Staffs Fibro
My Fibro is a Dog
by Pat
It hangs around like a cloud of doom
I won’t let it.
Its brown eyes draw me in Wagging tail, soft and warm
It snaps fibromyalgia.
It barks pain ear-piercing sound It hurts my mind.
It sleeps most of the day Snoring its pain
It’s fatigued and tired
It sits on the sofa By a warm fire
It’s not liking the cold
The curtains closed to the world
In this space I am lonely.
My Fibro is a Rhino
by Karen
The rhino in me makes the pain walk away charge the skin pull push the fat stinks and grunts the sides and ribs the bones pawing the dirt scrapping panting the greying roaring the hard face sideways burning staring back inner feeling anger stomach full of mud and water rolling forward and back
My Fibro is a Sloth
by Louisa
The Sloth in mestays away from others doesn’t want to join ina suffocating grip choking hopeleave me alone let me sleep let it stop
My Fibro is a Dragon
by Shaun
Breathes fire
Scaley skin
Rough Claws
Wings
Lies in dark cave
Big teeth
Joint pain
Burning pain
Stabbing - biting
Aching muscles
Fatigue
Spasms
Electric jerks
My Fibro is a Crocodile
by Shahzana
Long sharp teeth devour every part of my aching body slowly creep up to bite from every angle
The growl, grunt and snarl lay low in the swamp that is me
Muddy water sucks me in, I drag myself out she pulls me back.
Big dark eyes burn like a forest fire pierce my throbbing anatomy
crush and cramp muscle and bone
My body feels decrepit, decayed, musty and mouldy. So much older than my age.
My Fibro is a T-Rex
by Angela
It has taken over, it’s parasitic I no longer exist, my shell is all that is left I’m empty, extinct
It never tells you what it’s thinking I never know what it’s going to do next
Large mouth with sharp teeth tiny squeak, almost silent it smells of death and loneliness
Heavy dumpy legs covered in cuts and bruises short arms and sharp claws rip at my soul
It bangs about, falls over bashes into things, doesn’t sleep
Some days I pray for the long sleep the t-rex is dead I die as mefree at last.
Section 2: Screams of consciousness
A Country Walk
by Shaun
I went for a walk in the countryside with my dog.
It was a damp dull overcast day and quite windy.
There was a gnarly old decomposed skeleton of a tree in front of me.
A plane flew overhead high in the sky.
There was a small break to blue in the sky. Cows were in the field to my left. Sheep were on the other side.
A man with his dog, a staffy, passed by me.
The dog barked with excitement as he passed my dog.
There was a farmhouse a hundred yards to my right.
A thin tall man walked towards me from the farmhouse. He was the farmer.
He was in green overalls and a peaked hat with his sheepdog and his cane. He said hello and please stick to the footpath.
I could hear shooting in the distance.
I gave my dog a treat from my bag.
I also ate some chocolate and had a drink of water.
I caught my finger on a thorny bush.
Luckily I had a plaster in my bag to stop the bleeding. As I passed the cows there was a distinct smell of cow poo.
Also, the birds chirped happily to each other.
Me and my dog enjoyed the crisp damp fresh air.
by East Staffs
Evening Daze
by Karen
Pebbles small.
Pebbles big, are on the shore.
A hill far away.
A castle, following the path of righteousness.
Blue sky give to people. White waves.
Clean houses and the sandy banks. Evening daze.
People walking in the water, for the lovers chatting and kissing. Nothing in the sea.
Something in the sky. Hot air balloon, green, oval.
No evening train, beach and chips, waves on the shore rolling.
A plane on the runway nearby, and people shouting loud.
And the fish and chips opening the doors and the shutters.
Tasting the salt on the lips. Smelling seaweed from the beach.
Smiling with pain and joining the sea and the sky in one form of blue breeze.
Tide coming in.
My hair bobbles and bed socks, stopwatch started. Wanting to eat chocolate, painkillers nothing said.
I see Jesus making a footprint in the sand, wearing a white robe, beautiful robe.
The Hallway
by Louisa
He is coming home. It feels stressful. He throws his keys and coat down in the hallway. He feels cold and shivers, puts the heating on, hears it kick in.
He hears the birds but also hears cars and wished he didn’t live there. He does not get help. He puts living, pain, stress and longing for a nice home down. His hallway is so full he cannot get out. He needs more room - and help.
by East Staffs Fibro
A lovely day out
by Louisa
I’m walking looking out onto the water. It’s cloudy but dry in the air.
The hills in the distance look so inviting and green, shame the sky is a little dull.
Beyond the beautiful boats and masts I see onlookers chatting to each other. Another boat speeds by.
I hold onto a cold and rusty railing, then sit on a bench looking at the sandy beach - and wished I lived in one of the cottages.
There’s lots of gift shops, coffee shops, seafood and chip shops. I can smell ice cream.
I get myself some fish and chips and a donut. I hear the birds and a baby’s crying, engines and a horn beeping; such lovely sounds to hear.
I pop into my bag to get a drink - and some medication.
Walking along the cobbled pavement around the harbour wall I watch the fisherman. They don’t look very happy.
I think it’s time to go so I have a fag.
A strange fisherman walks past and makes a sarcastic comment; put that fag out.
Very rude man, I tell him, in your smelly fisherman clothes. If you don’t like it walk away, I don’t like your smelly clothes.
I wait for my bus to go home.
Autumn walks
by Pat
Walking along the canal with my Jack Russell dog Megan, it’s a beautiful warm sunny morning just a few fluffy white clouds and a cool breeze. The breeze is blowing the leaves of the trees, the gritty canal path is uneven and covered in wet slippery leaves. I touch the tree, it feels bumpy, its roots span out above the canal path. Up ahead a metal gate leading to the houses, I look up and hear the birds singing.
If I close my eyes I can imagine canal barges chugging along slowly and Moorhens calling their babies. I wave to the two people on the barge.
I turn and the dog stops suddenly. I kick her up the bum. I trip on the tree roots and fall. It hurts. I can’t get up.
The fisherman laughs at us.
I phone my partner and he comes and helps me. I hurt my arm. I sit on the bench for a few minutes.
Stream of consciousness
by Karen
Emptying thoughts. But hang on, Pockets of items. They are coming home, Joyful singing.
Awareness of Windrush. Sofa amazing orange, keys, juice, orange, crisps. Wonderful feeling.
Crocheting touch colour. Wool. Hook. Following a pattern Sing radio music (woolly bully) Sheep black woolly sheep.
Birthday surprise 50 years
My father (human) Your inner madness. Of first punch, Season of freedom. Longing for I.
I long for presents, Making song waiting. Magic dance.
by East Staffs Fibro Friends with People Express
Section 3: Don’t tell me it’s all in my head
The Shell
by Shahzana
Muscles hard and rigid
Struggling and suffering daily
Feelings of falling down a bottomless pit
Pain knocks me off of my feet
Body pulled tight with string
All the fibres of my body
Intricately woven together
Whimpering with fear
Feelings of going slow
Struggling
by Shaun
Feeling down and sad and really lonely
No energy, so tired and fed up with pain
Being in the garden helps pick me up a little Look at my dog which also picks me up
Excited a little for the new car tomorrow, but stressed with so much change to get used to in my life
Takes the edge off excitement, makes me anxious feeling old, keep thinking I’ve not got much time left.
I hate my pain
by Louisa
My head is full of trying to remember all that’s going on My daughter is strugglingno help for my grandson except me.
Struggling in my house, with my health living alone where I am. I help as well as go to my appointmentsa lot of doctors and surgeons
My body’s physical and mental health on a switch time for swim at pool, legs hurt, eyes stingbut what else is there to do with my time.
A different thing happens. A new thing every week. Weekend boring, stuck in on my own as usualdepression is a lot harder.
Eurovision song contest was crap, a waste of my hours Funeral tomorrow - can’t go.
Lots of pain.
Fishing
by Shaun
I have not walked for miles in Australia over the Sydney Harbour bridge or the outback with my dog but I have walked the tiny distance round the block with him.
I’ve never driven an F1 car with Lewis Hamilton side by side but I do drive my normal ride with my dog by my side.
I’ve never played football with my chosen team at Anfield but I have fished a great big lake in a field and caught a 40lb carp.
On the bank a hummingbird flying along is my swansong for mental health - you can’t go wrong.
I may not have...
by Shahzana
I may not have performed the Hajj or walked the Great Wall of China but I have travelled tragic loss.
Is it the season?
by Angela
Hate, anger, no control and of course life on the dole
Broken fridge, leaky sewerdo not even mention the rats
Chaos all around Me unable to get anything straight
Romance scammers, dementia make her words crueller
My feelings are everywhere and nowhere
I’ve spent my life trying to get her to like me. I don’t know why I’m alive
I have travelled much of the world
by Angela
I promised myself to do south of the Equator - I did that before
I planned to travel the Australian highway the world’s longest road
I wanted to return to SingaporeI was free there
I wished to return to Africa one last time I raised 5 lions - my greatest joys
I lived the dream in Africa I lived a full life. I wanted more
I had plans and promises Now I have nothing
It isn’t what you do, it’s what it does to you
by Louisa
I haven’t been to Jamaica walked a white sandy beach lost my head in the beat sun blaring at my feet.
I have been to Malta seen the architecture the bomb in the church that never went bang. I became a mother proudest moment of my life the fear of being a mother proud of being nan.
More about the project... the Creative Voices project was set up to:
• Provide positive ‘distraction’ activities for people living with the pain of Fibromyalgia.
• Support East Staffs Fibro Friends to become a new, creative, supportive social group. Offer participants opportunities to share lived experiences and coping strategies.
• Create a publication showcasing the artwork and addressing a lack of understanding of the condition within the wider community.
• Address inequality - Fibro Friends felt the restrictive impact of their condition on their lives was not widely recognised and was perceived to fall below the threshold for medical intervention.
Improve mental health and well-being.
What People Express provided:
• 12 two-hour, fortnightly workshops led by professional artists – spacing the workshops out and having multiple sessions with each artist worked well to allow for rest and recovery, external appointments, and the unpredictable nature of the condition. Multiple sessions with each artist to build trust and create a kind, patient and encouraging environment to support the group to try new creative activities and improve their skills until they were happy with the results.
• Access to a Fibro Friends WhatsApp group to remind the group of dates and times, and share work and activities to ensure everyone was included even when they were unable to attend in-person.
• Refreshments and access to transport when required.
• A People Express staff member at each session.
What our partners provided:
Access to a free accessible venue, comfortable and sturdy seating, natural light and supportive staff from the Brewhouse Arts Centre.
One-to-one support from Social Prescribers to encourage and support attending a first session – which was key to enable some of the group to attend.
Regular attendance of Community Officers to observe and collect data on health benefits.
Community Nurse supporting evaluation of the project from a health service perspective.
Additional findings and feedback:
“The option of a taxi made a lot of difference, I didn’t have to walk far and I got there safely despite how my fibro was that day.” Pat
“I felt comfortable because I didn’t have to pretend I wasn’t in pain and smile through. Everyone understood what we were all going through, especially Becky.” Shahzana
• All participants expressed feeling a ‘sense of achievement’ with what they had created. “Aren’t we talented!” Karen
Our Voice
Everyone’s experience of Fibromyalgia is different…
“Before I was diagnosed, I was going along at a hundred miles an hour; then, I started feeling what I thought was old age. I went from tired to exhausted, and my life went into reverse. I had a panic when they told me I had fibro, will I die from it, what will happen? I quit my job.
You’re told it’s menopause, but the symptoms don’t fit as you are in agony. I was getting out of breath; I put on weight, which was unusual. I got lumps in my breasts so I couldn’t get hormone replacement therapy. I kept getting really weird things and each time they would just say ‘it’s fibro’.
I started feeling very old (I was in my fifties), words didn’t come out, I couldn’t be in a room with lots of people, I couldn’t walk, I stopped driving. I was given a wheelchair but had no energy to wheel the chair. I started to feel like a prisoner in my own home. I didn’t have any mental health; it had long left the building. The thought of pain every day made me depressed.
In the end, I researched fibro myself. I learnt that 200 medical conditions fall into the syndrome, and it can be ‘primary’, your only condition or ‘secondary’ you have other conditions, and fibro makes them worse.
I have researched and tried things that help me. My dog gives me love and encourages me to go out. I’ve tried magnesium salt baths and salt rooms they really helped. I made a pain book where I wrote all my symptoms down so I could hand it to the NHS, when I couldn’t remember, it saved time.
What I think would really help us all would be a dedicated fibro clinic in each region, where people know about the condition and can advise you on how to live better (e.g. specific diets) and what treatments are available (e.g. salt baths, massages, pain management courses). The clinic could then provide training for Doctors and the wider NHS.” Angela
