• 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…

  • attitudes,  trains,  Uncategorized,  wheelchair

    >A Refreshing Experience.

    >I’m having a couple of weeks of from some of my regular responsibilities and activities.  A bit of a staycation if you will.  I’ve got several very fun things planned including some very long days out.  I’m also doing some bits I’ve been meaning to do for a long time (like today I did some baking, and I synced my iPod, removing some music and putting a load more on) and having a bit of a chillax.  I spent a while this morning working out some of the train journeys I’ll be making and then rang through to book the assisted travel.  I need to work out two more at least…

  • care,  perceptions,  trains,  Uncategorized

    >Perspective and a refreshing carer experience

    >Quite a lot of the other wheelchair users who live locally to me I know, at least to say hello to if nothing more. I keep seeing this guy around in a chair who I don’t know but his chair catches my eye as it’s covered in stickers and its red and it has an unusual control (or at least I’ve not seen it before). Today we were both on the train to Reading so I got a chance to chat to him and his carer. Mostly me and his carer doing the talking, you know what it’s like when two women with a common subject (disability/carers) get together. B,…

  • trains,  Uncategorized

    >It’s the small things part the second

    >For about a year now my local train company have been doing this thing where they take a random sample of booked assistance and ring afterwards to see how it went and if you have any comments.  And as a regular traveler I’ve had many of those calls. When you book they have this huge spiel they have to go through about how you need to “arrive at the station at X time for the train at Y and make yourself known to a member of station staff” etc etc.  And every single time they ask the type of assistance and when you say “ramps and a wheelchair space” they…

  • drama,  trains,  Uncategorized

    >”I’m NEVER doing that again.”

    >For reasons only known to one person and one person only instead of getting the train to Oxford on Saturday I was sent in an accessible taxi. I’d had a phone call from Oxford Friday evening to say their lift was broken but they could let me out of another door (not public use normally) which would avoid my needing to use the broken lift.  Would that be a problem?  And I said no so long as they showed me where I was going as it would mean I was leaving from completely the opposite side of the station.  Fine, she says, I’ll walk you round to the front of…

  • trains,  Uncategorized

    >Just Journeycare

    >Prior to today ‘I’ve only ever been to the NEC about four times that I can think of over about ten years (today was the 2nd time this year and the fourth time since I left uni) so it can safely be said I go once a year if that, usually.  And I’ve only ever been to Birmingham International Station when going to the NEC having never flown from Birmingham International Airport. And the last time I was there was memorable for me in some ways.  I suspect it’s not something I’d remember in years to come but I was telling mum about it as we walked through on our…

  • trains,  Uncategorized

    >Maybe Next Time

    >I had a couple of ideas for blog entries in mind.  One about assistive/adaptive tech – having had the opportunity to play with some on Wednesday and hearing about another sort I wanted to record it.  And one about life long dreams and living those dreams – three people I know are moving far, far away in the next week or so and my brother and his girlfriend just moved into their own place.  Plus a good friend and I were discussing her life long dream the other day and so I’ve been thinking about that stuff. Instead I have to write about meeting the new journey care assistant at…

  • argh,  trains,  Uncategorized

    >The mind boggles, it really does

    >I went into Reading today to do some shopping.  I was stressed out and depressed and by the end of yesterday knew that I had to escape today for the good of my mental health.  So I went to Reading. It was your typical Saturday in a shopping town – busy and hectic and crawling with people and noise.  I saw lots of other wheelchair users.  Probably there weren’t any more of  “my people” in Reading today than there normally is but I was just more aware of them. Because I had an encounter with someone who seemed to think there could only ever be one wheelchair user  *sigh* .…

  • honesty,  nano group,  perspective,  trains,  travel,  Uncategorized

    >”It’s my fault, I’m really sorry.”

    >Someone made a pretty big mistake today. One that affected me pretty badly. But then took the time to put there hands up to me and say “Emma, I’m really sorry.” and to admit to me that it was their fault. He looked me straight in the eye and went “I spoke to Julie and she told me she’d got you on the train but I just forgot to come help you off.” He told me he shouldn’t have forgotten and that it wasn’t good enough. By the time I had been to Reading waiting for a train back and gotten to my sleepy little town he’d arranged for a…