PGP / SPD My story:

The body I live in. Written by Sarah Wingfield / Kawaii Doll Decora   The rocky terrain keeps making my ankles twist as I find it hard to gain my footing. Why did my body become this clumsy, tight and painful suit I have to carry like a lead weight in this world? Whilst almost everyone around me floats so effortlessly and smoothly through life? I sigh. Every step I take creates pain, swelling, tenderness, I don't ever remember doing any sports where I never had earache or pulled muscles, tendons or soreness. It went unseen for so long, job failure after job failure with no answers to what was making my health as such. I had people looking at me like I'm the same as them and dismissing me for not being able to perform or operate as robotically as them. When in reality I worked much harder than most, liked to keep busy but needed days and days off where I lay in pain or swelling and my body had yet again let me down. I am disabled. Those words still hit me hard, like a knife jol...

Did You Know There May Be Surgical Options for Severe SPD? 🤔 For years, many people living with Symphysis Pubis Dysfunction (SPD) or Pelvic Girdle Pain (PGP) have been told that symptoms will improve after birth. For many, they do. But for some of us, the pain never fully goes away. Some people are left with long-term pelvic instability, chronic pain, mobility difficulties, and life-changing disability years after pregnancy. Whilst doing some recent reading, I discovered that surgical techniques have continued to evolve. Historically, severe pubic symphysis instability was treated using metal plates and screws to stabilise the pelvis. However, newer procedures are being explored using specialised suture and fixation systems designed to provide support whilst allowing a degree of natural movement within the joint. These procedures are not routinely offered to most people with SPD and appear to be reserved for severe cases involving significant instability and ongoing disability despite...

From My Bed, I Built a Lifeline: When I ran a helpline during the years I was bedbound, I came across far too many women from all over the world calling me for help, support, and simply someone to listen. Some were pregnant with their first child. Others their sixth or seventh. Many had been abandoned. I listened, comforted, reassured, and helped them navigate systems that often seemed impossible to access. One woman's story has stayed with me all these years. She was pregnant with her sixth or seventh child. Her husband had left her. She was alone, disabled, in pain, caring for multiple children, and had no support network around her. I helped her explore what support might be available, including carers, adult social services, advocacy referrals, and local assistance. I wrote supporting letters and helped signpost her to services that could make a difference. All whilst I was bedbound and housebound myself, living with permanent Symphysis Pubis Dysfunction (SPD) and Ehlers-Danlos...

Just this week alone: ❤️ Supported a woman seeking information about accessing an NHS-powered wheelchair and wheelchair services. ❤️ Took a young person in care out and provided ongoing support and positive experiences. ❤️ Continued supporting multiple advocacy clients, including housing-related challenges with councils. ❤️ Worked on the latest edition of Aycliffe Alternative Magazine, promoting local businesses, charities, community groups, artists, and young people. ❤️ Featured and supported people such as Sasha, Alufian Art Studio, S.T.E.P.P.S Theatre, The Comets, and other community projects. ❤️ Shared local events, support services, fundraising opportunities, and community information with tens of thousands of people. ❤️ Supported important petitions. ❤️ Donated to local charities and fundraisers. ❤️ Provided disability advice and signposting through my advocacy work and online platforms. ❤️ Supported disabled people by raising awareness of accessibility, dynamic disabilities, PIP...

Something I'm trying harder to do: ignore threats and abuse. Sometimes the strongest response is no response at all. When we're triggered, especially as neurodivergent people or those who have experienced trauma, the urge to defend ourselves can feel overwhelming. Trust me on this! 🙏🏻 We want to explain, correct misinformation, provide evidence, and make people understand. The difficulty is that not everyone is looking for understanding. Some people are looking for conflict. I've learned that constantly responding can keep us trapped in a cycle of stress, anxiety, and emotional exhaustion. Every comment becomes another debate. Every explanation becomes another screenshot. Every defence becomes another opportunity for someone to keep the conversation going. Protecting your peace is not weakness. Setting boundaries is not weakness. Walking away from an argument does not mean you were wrong. Sometimes the healthiest thing we can do is trust that those who genuinely want the ...

The Question?: I came across a question today - if I lost everything I've built, everything I've sacrificed for, worked towards, what would I be looking forward to right NOW. All that's gone. *Poof* and what am I excited for? Supporting my assigned young person in care as part of my qualified DCC work, Seeing my family, son, mam and dad on Sunday - Fathers Day, with Peter. So, my roots are still firmly family focused and for that, I'm truly grateful, especially in a world that's so antagonistic and selfish and cruel. It's the people that matter. Connection. So can people please stop forgetting that, because I could lose everything right this second, enough people are maliciously targeting me to, and guess what?! I'd still be me, I'd still be loved, I'd still love and I'd be happy!! I like to be useful, but no one 'has' to be. It's a choice. It's as simple as that, I just don't want to leave the world as I found it. I also won...