In this episode of the Not Quite Pod, host Charlie speaks with Cerys, a 23-year-old from Cardiff living with Limb Girdle Muscular Dystrophy (LGMD). They discuss the challenges of living with a muscle-wasting condition, the importance of mobility aids, and the complexities of navigating the healthcare system. Cerys shares her experiences in finding accessible housing and the journey of starting her own podcast, 'Unbalanced,' which aims to connect with others facing similar challenges. The conversation highlights the significance of community, connection, and the power of sharing personal stories. In this engaging conversation, Cerys and Charlie explore the multifaceted experiences of living with a disability, the challenges and joys of podcasting, and the importance of expanding conversations beyond disability-focused topics. They discuss the impact of public perception, the significance of language and heritage, and the complexities of being labeled as an inspiration. Cerys shares her journey in podcasting, the highlights of her experiences, and her aspirations for the future, all while emphasizing the need for authenticity and connection in her work.
takeaways
Cerys has Limb Girdle Muscular Dystrophy, a muscle-wasting condition.
Living with LGMD requires constant energy conservation and planning.
Mobility aids like wheelchairs can enhance freedom and quality of life.
Finding accessible housing is a challenging and lengthy process.
Cerys started her podcast to fill a gap in disability-related content.
Community and connection are vital for those with disabilities.
The healthcare system can be complex and frustrating to navigate.
Cerys emphasizes the importance of sharing personal experiences.
Disability-related admin can be overwhelming and time-consuming.
Podcasting allows for genuine conversations and connections. Advocacy can stem from personal experiences and public curiosity.
Expanding conversations beyond disability can help normalize differences.
Balancing personal life with podcasting can be challenging but rewarding.
Recognizing achievements in podcasting can boost confidence and motivation.
Language and heritage play a crucial role in identity and opportunities.
Community connections can be strengthened through social media.
Timestamps
00:00 Introduction to Cerys and Her Condition
03:00 Living with Limb Girdle Muscular Dystrophy
05:49 The Role of Mobility Aids
08:50 Navigating the Healthcare System
11:55 Finding Accessible Housing
15:05 The Journey of Podcasting
18:12 The Importance of Community and Connection
34:59 Navigating Public Perception and Advocacy
37:00 Expanding Conversations Beyond Disability
42:03 Balancing Personal Life and Podcasting
49:08 Highlights and Achievements in Podcasting
51:55 Future Aspirations and Moonshots
54:09 The Importance of Language and Heritage
59:56 Inspiration: A Double-Edged Sword
Cerys links
Access to work
https://www.gov.uk/access-to-work
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TikTok https://www.tiktok.com/@the.not.quite.pod?_t=8m6NV0NecCn&_r=1
Website: https://www.nqpc.co.uk/
Listen to the podcast on:
Spotify: https://open.spotify.com/show/7GG1WLjyWxTFb4fd9GbJeT?si=d14f5c370b374dc7
Apple Podcasts
https://podcasts.apple.com/gb/podcast/the-not-quite-podcast/id1618677301
