• Disability,  Ehlers Danlos Syndrome

    Not the spoon theory

    A Spoon Theory Alternative Have you heard about the Spoon Theory? When my illness first started to take hold of my life, I already had this analogy to hand. I had seen it shared on social media by friends living with chronic pain. I have used it many times, sending people links to this explanation on the internet to save myself from having to explain an already well covered topic. Certainly these days, as my energy reserves are a limited resource, I have very little desire to reinvent the wheel. However, a few times now I have come across people to whom the Spoon Theory does not make sense. Just…

  • Ehlers Danlos Syndrome,  Relationships

    My coming out story

    There are many reasons I might feel anxious before I go out somewhere. Have I got enough stamina today? Is the place that I’m going to wheelchair friendly? Am I wearing enough braces? Do I have enough medication – wait, when did I last take some? What dose did I have? This particular day though, I was filled with extra trepidation because I would have to face “coming out” once again. If you know me, this probably seems a little weird. I came out years ago. Most people in my life at the time probably attributed as much weight to it as they did my Goth phase. 15ish years later,…

  • A sign for a toilet door showing 2 simple figures that need to use the loo
    Disability,  Ehlers Danlos Syndrome

    I want to pee alone

    I want to pee alone Childless and halfway to 60, it was a strange revelation to have. A simple phrase which communicates the frustration and desperation of young motherhood. I’d seen it so often shared by my Mummy friends on Facebook, and yet it applied to me. This very same sentence perfectly epitomised one of the things I have found most difficult coming to terms with about becoming disabled. In the beginning… I left home at 18 chasing what was my biggest dream at the time; to be entirely self-sufficient. Not growing your own vegetables and living off the land. For me, it was moving from a family home where…

  • A photograph of zebra looking back at the camera
    Ehlers Danlos Syndrome

    Zebr…Uh? What is Ehlers Danlos Syndrome?

    Ehlers Danlos Syndrome – what is that? I asked myself the same thing when I first heard its name, I can tell you! There is actually more than one type of Ehlers Danlos Syndrome, but they all have an effect on your connective tissues. All of your connective tissue. Throughout your entire body. Your connective tissues do a pretty important job – think of them like the syrup in flapjacks. Mmmmm, flapjacks… It’s their job to hold everything that makes up your body together, providing support in your – skin joints (so tendons, ligaments, etc) blood vessels internal organs and even your bones. Or returning to my flapjack analogy: your…