• 2019,  attitudes,  CP related,  lymphoedema,  things people say

    Realistic

    I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss). When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely…

  • 2019,  care,  lymphoedema

    Jinxed it!

    I wanted to write a post about how proud of myself I am about something. I’ve been telling everyone about an achievement since last weekend. Unfortunately telling them seems to have jinxed it! My care package has been in place for a year now and not once have them come and found me still in bed or in the shower. I’ve always had a set of wraps ready to wear and I’ve never been having a “crap I have no clean clothes” or other major crisis. I have been only part dressed or just in a towel a few times but that’s usually down to their changing the time and…

  • 2017,  Action 4,  action3,  hospital,  jay2,  jay3,  lymphoedema,  spasticity,  wheelchair

    A new chair

    I’m getting a new manual wheelchair provided by the NHS. I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?” And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.” They also got a new type of cushion out for me to try and the OT declared she…

  • 2015,  anaemia,  Family,  furosemide,  lymphoedema,  sailing,  trains,  Uncategorized

    Random Bullet Points of Life

    For the small things worth mentioning but probably not worth a blog entry of their own + The furosemide for my lymphoedema is working and my feet are improved. Still obviously swollen but less so and my trainers fit better (but are still out of shape). I’m pleased. Blood test tomorrow to check the meds haven’t messed up my kidneys (and at my request check my iron) + I got sailing for the first time in several weeks last night. I really didn’t think I would based on what they were saying in advance about the weather but I was bored so we went to see. Even when we got…

  • 2015,  CP related,  furosemide,  lymphoedema,  Uncategorized

    It’s Okay

    For me blogging is an outlet. And it’s a pretty good one.  I’m generally very open in what I share about myself although I try and protect other people’s privacy. I’ve been blogging for fifteen years and in that time how and what I share has changed.  I’ve been quiet on my blog lately because that seems to be going through another change. Not really a welcome change. I welcome comments and questions and responses to my blog – the majority of which come through twitter nowadays. That’s brilliant. But there are some people who seem to read a completely different story to what I’m writing – One time someone…