• 2017,  action3

    The Changing of the Guard.

    In just over 12 hours I have an appointment with wheelchair services to have my new wheelchair fitted.  If all goes according to plan it comes home with me and my action 3 stays there.  Policy is that wheelchairs returned to them go to the workshop and get refurbished before being reissued.  I doubt they’ll even bother to look at mine because the reality is I use my wheelchairs to death before they get replaced and it’s fit for nothing but a trip to wherever it is dead wheelchairs go when they’ve served their time. I’m looking forward to it and very hopeful that the new set up will be…

  • 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…

  • 2016,  action3,  Attempts at World Domination,  CP related,  falls,  Uncategorized,  you know you've got CP,  you know...

    You Know You’ve Got CP When…

    …you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident. So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner…

  • 2016,  action3,  jay3,  laterals,  Uncategorized

    Wheelchair Woes

    So I was really happy. I finally after nine weeks+ had two working wheelchairs. My manual for the house (and the little bit out the house I use it for) and an absolutely amazing new powerchair that – teething problems aside – blows my mind. Only my manual had been making a really terrible noise intermittantly along with moments of not feeling right. I had no idea what was wrong with it and it was so intermittant that I didn’t see the point of calling the NHS maintenance team. I just knew they’d come out and it would be working fine at that point and it would be a waste…

  • 2014,  action3,  Uncategorized

    A part of my body – me and my Action 3

    When you’re given a wheelchair on the NHS it’s expected that it won’t be replaced for five years.  The exception to this rule is if you’ve had a change of need.  For example growing up I never, ever, hit the five year mark because I was growing taller and needed bigger chairs.  I was told when I got my current chair and asked for clarification of what a change of need might be that they “wouldn’t expect to see a change of need in someone with CP.”  The five year life of my Action 3 (my current manual chair) is up in about six months.  So I’ve been thinking over…

  • 2013,  action3,  baclofen,  dream diary,  identity,  laterals,  personal,  perspective,  powerchair,  Quickie Salsa,  songs of my life,  thinking,  Uncategorized,  walking,  wheelchair

    A Dream Is A Wish Your Heart Makes…

    I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it. I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the…

  • 2012,  action3,  Quickie Salsa,  ranting,  Uncategorized,  wheelchair

    Wheelchair Etiquette

    Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat…

  • action3,  Dad,  hospital,  jay2,  jay3,  laterals,  OT,  physio,  shoes,  spasticity,  spine align,  Uncategorized,  wheelchair

    >Details on my new seating

    >Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating. And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up –…

  • action3,  frustrations,  jay2,  jay3,  lyrics,  OT,  pain,  physio,  spasticity,  Uncategorized,  wheelchair

    >Don’t Look Back In Anger

    >I went for my wheelchair assessment on Wednesday.  And it went really well.  The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present.  So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run. The thing is though I can’t help feeling a little frustrated and even angry.  I was assessed there in 2009 and I told them certain…

  • action3,  jay3,  jazzy,  powerchair,  Uncategorized

    >If My Chairs’ Had a Voice – A Blog for International Wheelchair Day

    >Today is International Wheelchair Day. As such the wheelchairs that are part of this A Writer In A Wheelchair blog are having there say after I dreamt of blogging a photo of my powerchair with a “I am in disgrace” sign on it. Because it is. Long story and it’s all on twitter anyway. My powerchair speaks… [A photo of my Pride Jazzy 1121 powerchair with a piece of paper with what she wants to say handwritten on it.] Happy International Wheelchair Day! I am a powerchair usually loved but currently in disgrace.  I broke down twice in 2 days, taking Emma’s freedom, making her housebound.  I’m not lucky enough…