• 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…

  • 100 days of writing,  2012,  fiction,  spasticity,  Uncategorized

    >A Chest of Drawers

    >I seem to have gotten my fiction writing mojo back, yay! I’m very pleased :-). I’m less pleased about the fact I seem to have lost my reading mojo but, well, you can’t have it all. Something else I’m pleased with is this piece. I started off wanting to work more on description, particularly of a setting. I’d also been thinking about an analogy I used a while ago to describe what the spasticity in my quads is like at the very worst times. This seemed to take on a life of its own as I wrote but for better or worse is the end result. It needs a better…

  • 100 days of writing,  2012,  baclofen,  botox,  hospital,  neurology,  physio,  spasticity,  Uncategorized

    >The Man With The Needles

    >I’m going to see my neurologist tomorrow in spasticity clinic. Hopefully this will be a joint appt with my physio (it’s meant to be but the track record on that isn’t good) to discuss whether I need more Botox. And for me to have the jabs if so. I suspect that will be the case. I also wonder if my baclofen will be upped. I described that to a friend as “going to see the man with the needles” last week and thought that was an intriguing idea for writing. Today is day 35 of 100 which feels like a huge number of days achieved. Especially as I almost forgot…

  • 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…

  • botox,  disability,  friends,  frustrations,  language,  Paralympics,  physio,  serial casting,  spasticity,  Uncategorized

    >Interesting Times

    >Lately I feel like I live in Interesting Times as in the Chinese saying.  It’s certainly been an interesting week. Monday my powerchair broke down with no warning. In the middle of Sainsbury’s car park. In the drizzle. Although luckily it wasn’t raining as such at that point in time. I tried to talk a Sainsbury’s employee through putting my chair into freewheel but he couldn’t do it (whether my instructions weren’t right/clear enough or he didn’t force it hard enough I don’t know) so my plan of getting a taxi back here fell through. I called my parents house on the off chance someone was there not expecting there…

  • antibiotics,  baclofen,  depression,  fluoxetine,  meds,  Sertraline,  spasticity,  Uncategorized,  UTI

    >Changing my meds

    >Mostly for my own records because otherwise I won’t remember when this happened and it might be useful at some point in the future. Went to the Dr today.  I was very nervous about going to talk depression for some reason and threw up before I left. Not that unusual when I’m anxious but not nice. At all.  It wasn’t my usual GP but a different one (who I asked to see as my GP was unavailable and I’d seen him recently and knew he was easy to talk to and also good).  The different in perspective and opinion on my meds was interesting Baclofen increased to 40mg a day…

  • baclofen,  fluoxetine,  meds,  spasticity,  terbinafine,  trains,  Uncategorized

    >In which CP makes things complicated

    >Sometimes being disabled is soooo complicated. Yesterday, I saw my GP. When I was waiting to go in something made me jump – and then spasm (my CP means I jump really easily and jumping usually triggers spasms of some form).  This woman sitting opposite me went “oooh that made you jump” which was apparently the funniest thing ever because she burst out laughing as she said it.  Pretty upsetting. My GP asked how I was when I went in and I said “OK” but I was feeling down because of that. Luckily she knows me and went “what does that mean?” So I told her, generally I’m good but…

  • books and reading,  disability,  sailing,  script frenzy,  spasticity,  Uncategorized,  writing

    >Six Things For A Sunday

    >I’m currently involved in two different resident involvement projects for my housing.  They seem like they are going to be good fun but possibly bad for my diet. At the workshop yesterday they got us a chip shop lunch (sausage and chips, twas yummy) and I hear that we’re having pizza at the next one.  Plus I get supermarket vouchers for them so I have some mad money to spend. I bought a cheap DVD with some of it (and used the rest of the vouchers to do my food shopping, I’ll spend the worth on something else though) but I’m not sure what I’ll spend the rest on yet.…