A Powerchair’s Eye View

I’ve been lent a gorilla pod after a couple of us who are working on a video project wondered about the possibility of using one to mount a camera on my powerchair.

It works really well mounting the camera on the armrest of my powerchair and I’ve enjoyed playing with it.  But the videos make it very clear just how bad the squeak of my chair is – the tech who came out last week did succeed in replacing the wheel with the busted tyre but his attempt at sorting my squeak was a big failure. Here’s a powerchair’s eye view of my trip to the park this evening

(video of a park.)

I did take a really good photo in the park though (although I took my phone out of the gorillapod to take it)

My shadow on some grass - my seat riser was up to it's highest so the shadow includes the workings of that.
My shadow on some grass – my seat riser was up to it’s highest so the shadow includes the workings of that.

I haven’t yet been able to get the gorilla pod to grip on to my manual chair. I don’t have arm rests on it and there’s very little in the way of frame it could go on and the bits I’ve tried haven’t worked. I think that’s a problem with the chair rather than with the gorilla pod. If I can get it to work before I go to the sailing club on Friday for the Challenger regatta I may do a quick “spotted at the sailing club” video. I suspect that a gorillapod would almost definitely work to mount a camera or a phone onto a challenger and would get some excellent video/photos (might need a bigger one). But I don’t want to try it for fear that as soon as the boat heeled over my phone and the gorillapod would be in the water. I do need a new phone but that’s still a risk I’d rather not take.

I strongly suspect I’ll be treating myself to a gorillapod of my own when our project is over and I have to give this one back.

Going to London

Wednesday, mid morning my mobile rang.  It was a friend of mine who works for one of the organisations I volunteer with.  She was calling in her professional capacity with good news.  A project I organised and ran has been shortlisted for some form of award.  The ceremony is in London, in February. Did I want to go?

Obviously I said yes straight away.  We chatted a bit more and then said goodbye. I spent some time looking up the venue online and being excited and then got on with my day.

Yesterday, a bit before 5pm my mobile rang again.  It was still in my bag where I’d been out all day and I missed it.  I’d just gotten to where I’d left my bag and picked it up to hunt my mobile out when my landline rang – the same person who’d just called my mobile.

“Hi is that Emma?” the unknown voice said.  I said it was and she continued “it’s such and such from so and so publishers, you expressed interest in one of our reader workshops and I just wanted to check when you might be available. We’re thinking [these dates] and we’re in London near Leicester Square.”  We chatted a bit more and she told me they’d be in touch when they settled on a date. Then as she was saying goodbye she mentioned they wouldn’t be able to cover my travel expenses but I’d get a big goody bag with lots of books (I’m not sure our definition of lots of books will be the same). I said I was happy with that. We said goodbye.

I spent sometime online trying to figure out exactly where they are and how I’d get there (I still haven’t quite pinned it down as I can’t until I have details but there are options). And being very excited.

I just spoke to my mum and she said “have they got wheelchair access” and I realised I was so excited I forgot to ask. Oops. I did mention I used a wheelchair however but just in passing and they may not have registered it.

And I tell you what if I get to the end of today without another surprise phone call offering me a day out in London I’m going to be very disappointed!

Party Memories (part one)

Small bullet point memories of my 30th birthday party.  I’ve been putting off writing this until I feel less depressed.  I do feel like things are moving forward from that point of view but they’re still bad.  It occurred to me however that I might feel better for thinking and writing about something very cheerful so here goes…

  • It was really, really good fun. I danced so much that my back hurt most of the next day.  That was totally worth it.
  • I’d really agonised over the venue because the party room and bar are on one floor and the two disabled loos are on another (right next to each other which I’m sure made sense to someone…).  There is a lift but I’d worried with the number of wheelchair users we might end up with there could be a big hassles with that. But unfortunately we couldn’t find another venue.  I think I invited seven other wheelchair users but actually the only other wheelie there was <a href=”http://stickmancommunications.blogspot.com”>Hannah</a>. So it worked really great from that point of view.
  • My birthday is actually Christmas Day so this was a very late party (due to Christmas being a rubbish time for any other form of party).  I never expected presents and if anyone asked me what I wanted I told them they didn’t need to bring me presents.  I got loads and loads of presents actually which I didn’t expect.  Some really great stuff too.
  • In terms of who was there I’ve been using the term weird to describe it.  Which probably isn’t the right one. Unexpected, probably is. Basically when I did the invites there were people I thought probably wouldn’t be able to come and others I thought for sure would come. There were also people who I thought wouldn’t stay long and others who I thought would be there until the bitter end.  But it felt like I was wrong on all of those. It was almost like if you were one of the ones I’d suspected (or in some cases they had said)  were coming for an hour or so only you stayed for way longer and one or two I’d figured would be first in last out were anything but.
  • Of my three cousins on my Mum’s side I’d been told two (plus partners) were coming but one couldn’t make it. What actually happened was the two I was expected both didn’t due to illness but the one I wasn’t expecting and his partner turned up and surprised me. Fun stuff and a very nice surprise!
  • Several other people who had said they were coming then didn’t come.  Some let me know not to expect them in advance and others didn’t. In one particular case I found out from another friend that they’d decided not to come which I was absolutely livid about (this was a few days before the party).
  • One of my besties wasn’t well and didn’t come but then popped round the following morning bringing (yet another) unexpected birthday present and an “unbirthday” card. Apparently her husband was very confused by the unbirthday bit as he didn’t know you could buy those. Somehow he missed that fact that card making is her hobby and she’d made it! She then stayed for a while to hear all about the party which was fun. I must admit when she rang however I was all “you can come so long as I don’t have to get dressed.” and I just threw some jama bottoms on while I waited for her.
  • My mum and sister made a massive chocolate marble cake in the shape of a 30.  They made two big roasting tins full of cake and cut it out freehand (using a template). 75 eggs went into the making of said cake bits of which I believe are still in my parents freezer.
  • Everyone gathered round in a big circle with me in the middle to sing happy birthday and for me to blow out the candles.  I think my brother had difficulty holding the cake for that… he certainly said it was heavy at the time.
  • They then did three cheers for me which was embarrassing but sort of fun and everyone danced to Chesney Hawkes One and Only which is my absolute favourite song.  Brilliant and the only time we had absolutely everyone dancing.

Wow actually I’ve gone into way more detail and said much more than I planned about the party. I’m really tired and I think I’ll save the rest of this for tomorrow to save writing a total dissertation in one blog entry.  Writing this has cheered me up and made me smile though… 😉

>Instagrams

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Playing – a self portrait


A mistake with a flower


A messy self portrait


Part of my bedroom – this is at the end of my bed


Bobby – my bear I’ve had since the day I was born. My dad calls him Sir Robert


Yet another self portrait this time showing my tattoo (a gecko, all in black). In Reading today an older lady told me she usually hated tattoos but she really liked mine

>Updates

>Recent happenings and not so recent things I’ve forgotten to mention but occur to me now:

I’ve made some baby steps on the way to starting to lose weight again so I’m hoping the scales will start moving downwards again very soon!  Specifically I’ve given up coke and chocolate again.

My leg is still nasty but is improving very slowly.  I’m really glad they gave me more antibiotics after all because clearly they are doing something.  Being on this level of antibiotics and having been on antibiotics for so long is making me feel a bit rubbish though!  I’ve been resting a lot these last two days and trying to take better care of myself and as a result I’m not feeling as run down.

I was driving myself crazy trying to figure out if the Sertraline is helping me and not coming to any conclusions.  It’s too soon to tell however so I’ve decided to (try to) forget about that question for now.  I’m certainly no worse and feeling a little bit more positive for having taken control back.  Equally I keep deciding that my spasticity is a little less with coming off the fluoxetine and upping the baclofen and then deciding that no, it’s not.  I meant to ask my mum when she popped round this evening for her opinion but then completely forgot when she was here.

I am now on the waiting list for a neuro physio assessment, having been encouraged to ask for that following my free 30 minutes with a physio at Naidex.  I’d decided not to ask for that as I didn’t think I had any options other than more baclofen and botox.  More baclofen the GP can and does do and botox is not something I’m prepared to consider.  But chatting to the physio was really good and it appears I have several other options I’d not realised I had.  No idea how long the waiting list is though.

Meet the physio made staying overnight at Naidex and all the hassle that went on worth it.  Meet the OT, not so much.  She started off by commenting that she didn’t know why I’d bothered to make an appt as I had Sarah (@GentleChaos, who is an OT as well as a crip and who knows that OT I think) with me.  Totally missing the point that Sarah’s my friend and I don’t want to make her my OT as well!!  And then when I asked my question about wheelchairs she started trying to tell me I should learn to drive and then about places where I could get special wheelie clothing.  Anyway, enough about Naidex.

Have been wondering about the possibility of going to Stoke for a day to visit some friends and revisit my old uni days haunts.  Having looked at the train times however I’m sure it didn’t used to take that long and therefore having a rethink on the possibility… it’s not out but it’s more of a maybe than I thought.  I’d like to go back to Stoke for a visit and we’ve been trying to come up with different things to do when we meet up (usually in Birmingham) which is what made me think of it.  Looks like I might need to investigate some other options as well..  Not going away this summer but would like to have a couple of days out doing something different to usual.

Speaking of days out, I’m speaking at an event in Coventry on Tuesday and then one in London the Tuesday after.  I’m looking forward to them even though the topic wouldn’t have been my first choice to go and speak about.  Plus, it’s nice to be asked to something that hasn’t go to do with being a crip for once!

>Chitty Chitty … Wheelchair?

>Sailability is run separately for the most part from Oxford Sailing Club as a whole.  And on Tuesday night one of the regular club instructors started chatting to me in the bar.

First he was asking me about Challengers and if we do racing, do we take part in the club racing etc.

Then he asked what sort of lifejacket I have.  He explained that they have groups of disabled children come up, some of whom can’t come out of their chairs.  And he had found it difficult to put lifejackets on them.  From the sounds of it that was to do with lack of mobility on their part and possible he was worrying about moving/hurting them too I’d imagine.  So he was wondering what I use.

So I told him that I have an automatic lifejacket – not the one pictured on that site but similar.  What I didn’t tell him was that basically the only reason I have one like that is they were donated to sailability.  And the person in charge wanted to be sure that people who would take care of them had them.  Basically because we have a few very young kids and people with learning disabilities who like to go playing in the water and who it’s hard to stop – automatic life jackets inflate if submerged past a certain depth or a certain length of time.  And the the inner workings must be replaced.  Cheaper than a new one but still a cost. A lot of those people do have their own sailability life jackets but different sorts.

I’d quite like to buy myself a different sort but that’s another story.

He then mentioned that he’d ended up putting the life jacket around them and the chair.  I said that probably wasn’t a great idea due to the weight of a chair and also because they then wouldn’t be able to get separate from it in case of need (provided they weren’t already strapped in).

The next comment did make me smile though.

He said “Maybe wheelchair manufacturers could start making something built in”

I couldn’t help it.  I just looked at him and went “What, like Chitty Chitty Bang Bang?”

He laughed and said he’d just thought that.  Then we went back to our drinks and it was pretty much the end of the conversation.

But I must admit that the idea of a Chitty Chitty Bang Bang wheelchair is a good one.  Personally I like the life jacket idea but it wouldn’t be on my must have list.  I’d really like a button to change it’s colour  when I’m bored.  Or to match my outfit/mood/whatever.

How about you?

>Lucky Emma

>Last week I got an e-mail about a survey thing where if you went and gave an hour of your time looking at some proposed new internet thing you’d get £40.  And they specifically wanted disabled people.  A friend forwarded it to me.  So, obviously I went “pick me! pick me!” and unfortunately they had too many people.  A bit disappointing but such is life.

But then yesterday I got an e-mail from the company saying they had a survey I could do from home and they’d give me £15 for it.  So I did and I got the cheque this morning, thank you very much.  Gonna spend that on something fun but I don’t know what.

I’ve also got a free copy of the new Dorothy Koomson book on the way to me from Waterstones.  I follow them on twitter and they tweeted Tuesday saying “send us a DM if you like Dorothy Koomson books” so I did.  And they replied offering to let me review it for the site and after my address to send me a copy.  YAY!  I’m actually reading one of her older ones, The Chocolate Run at the moment.  It’s the only one other than this new one (which is called The Ice Cream Girls and looks GREAT) I’ve not read and it’s good.  They are hosting a webchat with her next Tuesday (9th March) between 1pm and 3pm and they asked me to tweet the details which I did but I will just post those here too.  The chat link is this one.

I have one other freebie to share and a low battery on my netbook so quickly-

last Friday I spent a couple of hours at my housing asssociation.  They wanted some residents opinions on which of two companies they should work with.  It was really really interesting and I enjoyed it.  I found it interesting how the companies were so different and also how most of us in the room (all I think actually) had the same opinion of the companies and which should be used.  That was the first of my freebies and I got a  £10 sainsburys voucher.  Which I immediately spent on a new wii game as freebies much go on fun things not planned things.

I don’t think I’ve ever had such a lucky week!

And to top it all off my mum bought my train ticket earlier AND I fitted into the next size down in trousers.

I’m a lucky girl it seems

>Disappointed :-P

>I saw several copies of The Secret on display in Waterstones earlier.  I still don’t want to read that book (or watch the film) but they were right next to a book I did want to look at.  So I figured I’d have a quick look at The Secret too. 

No free shiv.  I was very disappointed.  It would have been the only thing that would have made me consider buying it.

>NaNoWriMo Update – Day 3

>Today is day 3 and I’ve gone from being 800 or so words ahead to being about 300 words behind.  Le sigh. I have 4700 (oh, finally got onto the site – I have 4765 words) and something words written which isn’t bad but the end of day three goal is 5,001 so that’s not great.

I’m hoping that the magic of the cornerstone bacon bap will work tomorrow and I’ll end the day ahead again.

Or at least that I won’t spend most of the day feeling headachy and blah.

Still I found what I think is every single thunderbirds episode on you tube and have been watching some today, that was fun.  I think the same user has posted some stingray episodes as well which clearly isn’t as cool or as fun as thunderbirds but is still cool.  I love how the internet lets me have blasts from the past so to speak and revisit childhood favourites (oh, who am i kidding, I still love thunderbirds now)

>Should have done it sooner

>I did something this afternoon that I’ve wanted to do for a long time but didn’t have the nerve to do.  I literally had a list of about five reasons why I shouldn’t do it.  I wasn’t actually going to do it but then I heard something that I wasn’t expecting and it made me introspective and thoughtful.  And I just thought “fuck it do it”  So I did.

I had my hair cut properly, properly short.

I’m very pleased with it and will share some photos later – I need to look for the leads to my camera first.

 Sophie, my hairdresser, said afterwards that we should have done it much sooner.  And she’s right about that 🙂