• Disability

    Fighting every step of the way

    I’m still pretty new to this being disabled stuff. Somethings have quickly become the norm, like finding out that somewhere that somewhere doesn’t have suitable access. Every now and then I come across something that is completely unexpected . A nasty surprise What I couldn’t have imagined was finding out that my local district council has submitted plans to remove essential, irreplaceable disabled parking from the town centre. In very measured “PR” responses to criticism of their plans, South Somerset District Council maintains that the parking in Middle Street, Yeovil is simply being relocated. However, when the proposed new parking locations are further away than people with mobility issues are…

  • Mmmmm olives!
    Disability,  Ehlers Danlos Syndrome

    Just The Tip(s) – Eating Out

    ‘Just the tip(s)’ is a series of posts with ideas of ways that friends and family can make different situations less stressful for people they care about with conditions like EDS.  Where shall we go for tea? I hate this question because I am very conscious of the fact that I ask to go to the same place every time we eat out. Even before I got really poorly, I’ve always been very easy to please; I could eat the same meal every day without getting bored, if it was a food I liked. However I am aware that this is not normal (Me? HA!) and that variety is the…

  • 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…

  • 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…