October 2009 – A Writer In A Wheelchair

>Word Prompts

>I’m going to do NaNoWriMo this year. I’ve attempted it several times but have either ended up “winning” with a lot of rubbish and a hell of a lot of cheating or as in the last couple of years I’ve failed dismally.

For the first time ever I have actually done a chunk of planning and I know roughly who my main character is and what my plot is. But writing prompts are always good.

So I’m basically posting this entry to ask if anyone who wants to could leave me a list of ten random words in a comment. I’ll try and fit them in somwhere, hopefully each person’s ten will fit into the same chapter. They don’t have to have anything to do with each other, this is supposed to be a crazy challenge and to spark ideas off.

Thanks!

>Here’s Hoping…

>I don’t have a lot of news this week for the challenge as such BUT what news I have is relatively big news. Big news which may require some explanation.

I’m a wheelchair user. I doubt anyone who reads this doesn’t know that. I have Cerebral Palsy (CP). I do independent standing transfers and can walk a very few steps with a walker. Accross a room is pretty much my limit without getting stupidly breathless (due to being unfit) and having really sore legs (that’s the CP). I can’t stand unsupported however.

The inability to stand unsupported makes weighing myself a total nightmare. A lot of people suggest making sure I do it exactly the same way each week. This isn’t possible. My inability to stand unsupported is because of my poor balance. And I have good balance days and bad balance days. In fact, no two days are the same. I also have a lot of issues with spasticity which can lead to my also having difficulty with standing and weight bearing.

Since April I’ve been having a lot of support from one of the practice nurses at the GP surgery I go to. It’s really useful but they have no way of weighing a wheelchair user. I’ve ranted at them a lot about that seeing as how they have 10,000+ patients meaning I cannot be the only wheelchair user with weight issues. But nothing doing. A formal complaint to the practice manager may have achieved something but moaning at my GP and the nurse is pretty much all I’ve done. I’ve let the matter go now as a waste of my time and energy. The nurse now keeps telling me that I seem to be in a much better place mentally and in terms of my depression. This is definitely true but I do wonder how much of that she’s basing on the fact I’ve stopped moaning about the ridiculousness of their having no facility to weigh a wheelchair user.

Anyway, I’ve been finding have no real record of my progress difficult. A couple of months ago the nurse started helping me to do two measurements. Neither have noticeably changed.

But a couple of weeks ago my mum said she had seen a stool (I assume a perching stool as those are vaguely Emma’s CP friendly) that she thought would fit on a normal set of scales if we could find one big enough. And last week we thought we’d seen one but didn’t know if it was big enough. So when we got home I looked on Amazon to see if they had measurements.

Couldn’t find the measurements but I did find the perfect set of scales for weighing me and being able to do it without standing up. Weight Watchers Remote Display Precision Electric Scales. They were rather more money than I would have liked to have spent. But I tried them Monday night and they worked perfectly.

Monday night fully dressed in jeans, hoodie and trainers I was 18st 11.5lb (263.5lb).

I’m hoping to be 17st something by Christmas.

Yesterday was a lazy day but a good day for food. I’ve had a migraine type headache since last night though. So here’s hoping…

>Evil

I had a really bad spell of hiccups earlier this morning. Kinda annoying too because I tried holding my breath and I tried drinking something and they didn’t stop.

Another of the volunteers at CAB said she liked the colour of my hair.

“Especially the green streak.”

cue me freaking out about the possibility of my hair having gone green. I guess all my usual talk about how it’s just hair, it’ll grow back was rubbish.

So I was all “it needs a wash but I haven’t had it done.”

“but you have been to the hairdressers?”

“no” really beginning to freak out.

She walked up behind me at the point, put her hands on my shoulders and leaned down whispering “yeah but it’s stopped your hiccups.”

She is SO EVIL. And I told her that too.

Must admit though it is pretty funny now I know my hair isn’t green.

>Crazy Update about my Crazy Life

>As I decided not to go to Stitch N Bitch today (would have to leave early to go to the nurse and I’m really tired) I thought I would use some of this time to update my blog instead.

It’s been pretty crazy and busy for me lately so here’s what I’ve been up to. And why I’m so tired.

Last week I volunteered at CAB four days instead of my usual two. It went pretty well but with that and the fact that the weekend was really busy too it’s a bit much. But I do suspect I could do more hours at CAB more regularly if needed. That won’t happen though.

We were able to stay for drinks after creative writing last thursday which was really fun. Religion and creationism/evolution were discussed again. It didn’t go quite as over my head this time. We have a good group of people, quite eclectic and we end up talking about anything and everything.

I think I’ve sorted out exactly what my NaNo plot is going to be which is pretty much unheard of. One of the other creative writers read the very brief story that isn’t really a story I wrote about it. She seemed to really like it and said it made her sad and wanted to know more. I’m looking forward to writing it although a part of me does still really want to write a Thunderbirds fanfic instead.

Last Saturday I went to Birmingham for the day and met up with two of my friends from uni. One of them had brought his dad instead of a carer as he’d had a problem with the carer who was supposed to come. It was really nice to see them both as I hadn’t for a few months. And it was also nice to see his dad, I knew him quite well when we were at uni as he would come pick me up sometimes when we went out places. Hadn’t seen him for years so it was nice to chat a little and catch up.

We went to pizza hut for lunch than to see Evita at the Birmingham Hippodrome. I really like that place, it has good access and absolutely loads of wheelchair spaces. So much so that it would surprise me if when booking with lots of notice as we do we couldn’t get the two spaces together we need. Evita was a good show, I’d not seen it (or the movie of it) before and wasn’t overly clear on the story going in. I liked it but found the story a little hard going to follow in parts, especially the second half. I was glad we went but I think I prefer the more upbeat Joseph and Grease type musical as a whole.

Bizarrely I was flicking through the programme before it started (I collect them) and looked at a name and thought “I know that name.” then spent a few minutes looking at the photo going “is that?” and it was – a girl I went to Primary School with is in the ensemble in it. That’s one of the things you don’t expect to see. When I told mum she said it was bizarre but even as a child she could see it was the sort of thing the girl might have gone into. My google fu tells me it’s definitely her too and she’s been pretty successful.

Sunday I went to see Tim Minchin live in Oxford. Was supposed to go with a good friend of mine but she was sick so my mum went instead. He was really funny and I enjoyed it. Mum said some of it went over her head (which it did with me in places too although I knew some of his material from the internet). She also described it as a bit like Monty Python in that she knew it was meant to be funny but wasn’t sure why in places. I’m really glad we went and he’s definitely very talented but I’m not putting him high up on my “must see again” list of comedians. I’d probably like to but there are others I’d like to more.

Some of the paths in Oxford seem to have been redone and wheeling myself to and from the theatre (my dad dropped us) was a lot easier than it’s been for a long time. Also at least one crossing has been altered which was fantastic because many times I’ve nearly come out using it and that’s been with mum helping me. On Sunday I was solo and fine.

Also the New Theatre finally have a replacement lift after pretty much a year with a moveable ramp on a flight of stairs. Fun as that was, a new lift is good! It’s a proper lift in a shaft as opposed to a platform lift on the stairs too. How great is that?! And whilst they keep it turned off before the auditorium is open once they have it on you can use it when you want as opposed to needing a member of staff and having to wait for the crowds on the stairs to clear. They have a guy there who does the disability support, gets you drinks etc because the bar hasn’t got access – we’ve met loads now and when I asked if we could use the lift without a staff member he just went “yeah I’m not your babysitter.” which made me smile and laugh.

Tuesday I got my new wheelchair which I’ve already written about. I rang this morning all prepared to fight my corner for a better cushion and was told “a gel one has already been ordered for you” and that my OT isn’t in until Monday when she’ll call me. I will be calling Tuesday first thing if I don’t hear from her. Over the last day or two I’ve noticed a few other small things which might need to be adjusted or altered but the cushion is the only major urgent one for the time being. I’ve taken the one they gave me out (which actually is covered in marks making me think it’s second hand, GRRRR) and put my gel one from my Quickie back in. It’s much more comfy but is totally not the right size for the chair which isn’t working out too great as a whole.

Yesterday I did CAB in the morning then went to Millets with my mum and then to a big Tesco Extra (where we just went round the non food bits). I bought my mum’s Christmas present and she got one of my birthday/christmas presents too – we each chose them. I also got some new knickers in Tescos. I wasn’t desparate for them but it’s the sort of thing you always need and they were ridiculously cheap so I’m ignoring the fact they aren’t my usual style/cut.

I’ve had my eyebrows waxed today and I’m off to the nurse in a bit before creative writing tonight.

Told you I’d had crazy crazy crazyness going on in my life lately!

>Initial thoughts on the new chair.

>I started writing a longer post about my new chair but for now some brief observations. It’s an action 3 wheelchair (invacare, don’t google it the standard ones look shit) but it has a Jay backrest on it.

I’ve never been this upright in a wheelchair before. It’s really cool. It feels like it stretching my spine out which is probably a good thing. Or at least that’s the best way I can describe it. Also I think it would be physically impossible for me to end up slumped over in this chair.

You know how they say “once you’ve tried…. whatever …. you’ll never go back.” ? This is my first Jay Backrest (specifically the J3 by Jay) and it’s only been a few hours but I’m wondering if that’s going to be the case here.

My therapist was required as part of the prescription to give me a seatbelt, they have to provide them to everyone who they give a chair. The one that came with the chair is the most ridiculous size and she tells me fits no one, she thinks it’s a paediatric one. It’s also velcro which I’m not convinced is particularly safe. The need to go get me a different one that would fit from their store was mentioned. Then the engineer was like “Emma will you wear the seatbelt if we give it to you?” and I was all “no way I think it’s safer that I don’t wear one” (because if the chair goes I get thrown free rather than go with it) so they’ve left me with one fitted that might fit my friend’s all but four year old but certainly isn’t going to be going round me or even around my skinny wheelchair using friends. Still they’ve ticked their box so they are happy!

I find it interesting that given they must provide a seatbelt for safety (even if as in my case the disability doesn’t necessitate it) but that they aren’t required to provide anti-tip stabilisers. They were something else I seriously wouldn’t use (this time from a practicality point of view) but the requirement for one and not the other surprised me. Especially as stabilisers are the one that seem to do more for safety to me.

I got a new wheelchair cushion with this chair. I will however be ringing my therapist for another one to be sent out urgently tomorrow. She forgot what we had discussed and grabbed me a standard foam one (not even memory foam!) from their store and said I might need something better but to try it for a few days and call her. I’m used to just gel for the last year or so although I have used memory foam and also gel/foam combo cushions before – the gel/foam combo was what was discussed at my assessment appt.

Dad and I called into Sainsburys in Oxford on the way home (a long held tradition that isn’t an actual tradition after my rare hospital appts – stemming from the days when we didn’t have a sainsburys here and my parents liked to go there when they could and the fact that today both of us had bare cupboards). We weren’t halfway round before I was like “this chair is really comfy but ooops there’s that numb bum feeling she warned me against getting.”

So to recap: So far I am liking the chair, loving the backrest but hating the cushion. That said it’s ridiculous for me to have this sort of cushion given how long I spend in my chair. I am slightly annoyed with myself that I just accepted the suggestion to try it and see.

>Woooo!

>I’m doing my healthy you check in post a little early because tomorrow I will hopefully be writing a post full of squee about other things.

Not that this isn’t a really happy post!

You know my new jeans that I bought a little less than a month ago?

I’ve been living in them the last few days and they’re so big on me now they’re falling down!

I was really shocked when I put them on and that happened, particularly as they’d been washed and in the dryer. I’d actually been expecting them to feel a little tight as jeans can be stiff when they’ve just been washed.

That’s got to be a sign that I’m doing something right. I’ve got some old ones in the next size down but I suspect they won’t fit just yet. So I guess I’ll be off to buy a belt sometime pretty soon. Because even staying in my chair jeans this baggy aren’t working out too well. I’ll also be buying a new handbag. Just because really…

I bought two pairs and one is falling off, I haven’t worn the other for a while. I suspect probably those won’t be falling off because even though they are the same size from the same shop thei felt a little tighter on me.

I showed my mum this evening how loose they are. She was impressed. And then she went “they’ve probably stretched.”

Possible but I think not!

>If by Rudyard Kipling

>I was just reading something online and it had a few lines from this poem in it. It reminded me how much I love it and I thought I would post it here.

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don’t deal in lies,
Or, being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise;

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build ’em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: “Hold on”;

If you can talk with crowds and keep your virtue,
Or walk with kings – nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run –
Yours is the Earth and everything that’s in it,
And – which is more – you’ll be a Man my son!

>Challenge Emma

>Up until 20 minutes ago I thought my plans for this evening had been cancelled. However my mother has now come to my rescue (and my Dad too really as he’s gonna drive) so they’re back on. They’re picking me up in an hour and ten minutes and in that time I need to make dinner (waiting for the oven to heat up), eat said dinner, have a shower and get dressed. Should also find my blue badge, really.

Fun times!

>My Tattoo

>Someone on the NaNoWriMo forums posted in the plot realism section asking for people’s stories about getting and having tattoos. They asked a lot of specific questions but I didn’t really answer those. I thought it might be interesting to share that story here.

I have chronic depression. When it was at it’s worst I would tell myself I didn’t have a tattoo yet (always wanted one) so I had to keep going and battling through. So I knew that as long as things went on like that I would never get one. About five, six years later I was recovered a lot and no long had some negative or worrying thoughts so I got my tattoo. It’s my symbol that I’m recovering and of everything I’ve overcome (although few people actually know that). It’s a gecko and all I can say is I just knew that I had to have a gecko before I went. I then looked up the meaning of geckos as spirit animals and found a lot of information that was very relevant to me. Oh and when my sister went to the same tattoo parlour a week before they’d had the radio on. When I went they were watching Titanic whilst doing all the tattoos. It was slightly surreal in that if I was asked to name a film I would expect to watch whilst waiting for and having a tattoo done, it wouldn’t have been Titanic!

>101 in 1001 – Item 30…

Join a Stitch and Bitch type group

…has been completed!

Yay.

That’s something I’ve been wanting to do for a long time. In fact since before I learned to knit (because I sometimes cross stitch too and was going to go and do that) but things kept getting in the way of my going to the Oxford one.

But a couple of weeks ago I heard that two acquaintances were going to go to a Stitch and Bitch the next afternoon at the Arts Centre and I invited myself along.

It’s a very small group as each of the three times I’ve been there’s been me one of my acquaintances (both have been but not both at the same time!) and another lady who seems so far to be interesting to talk to. I’ve been enjoying it a lot. Just really hoping it keeps going and that we get a few more people.

I find I can get quite a lot of my knitting done in that hour and a half. It’s quite relaxing too. Originally I had assumed it would have been in the cafe area but we pay £2 each and use one of the rooms which is much better because we have space to spread out a bit and it’s easier to chat without people everywhere and screaming kids.

Sometimes I find going to new things hard to do not because of the access issues that may or may not exist but more because of my confidence which isn’t always the best with new things. So I’m really glad I was able to do this 🙂