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Freya talks about bladder health – Urology Awareness Month

I've had to make many adjustments in my life, as an able-bodied teenager, to now. My condition is progressive, but there's no real indicator to show if it has gotten worse, you just find yourself not being able to reach the light switch that you could yesterday, or you miss the odd transfer here and there. I had to relearn how to do most things with my left hand as my right shoulder was the first to be effected, shooting a basketball, washing/doing my hair, brushing my teeth etc, so I'm very aware that I’ll have to continue to make many more in the future too, but you just have to, it's human nature to just keep pushing and find new ways to adapt and thrive.

When I think back to some of my earlier childhood memories, I think I’ve always struggled with continence to some extent, my mum definitely drilled those pelvic floor exercises in from a young age! We know now that this could be linked to the Muscular Dystrophy, but I wasn't diagnosed until I was 14, so back then there was no "reason" or diagnosis; it was probably harder to accept because of that.  

As my condition has progressed, I’ve had to look at more actions to manage my healthcare needs. I’m looking at accessing the right urology care locally as my condition has weakened and more invasive action is now needed. I strongly believe that patient choice is key to a better quality of life, ultimately you know your body better than anyone, so make your voice heard!

I don’t have great sensation in my bladder, I can’t fully empty it so that can become dangerous. It can be a challenge to manage and stay on top of your bladder health, you just want to go about your day as independently as possible, especially when I was at college, you get caught up in studying/socialising and it’s easy to forget!

I spoke to my form tutor about it, he was always an incredibly approachable guy, we had this “toilet time” nod that basically meant “have you peed today, have you drunk enough” etc. There’s definitely been times where I’ve missed social events or put off going out to things because of it, or fears of there not being accessible toilets (especially when alcohol is involved and urgency levels tend to step up!), but you have to surround yourself with the right people to make those conversations okay. I don't think people should feel ashamed about talking about their needs or Urology health. Ultimately, everybody pees! Some just might need more support to do so, but it's important to know that. The support is out there!

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  • 15 Sep 2020