>A Writer In A Wheelchair

>My new blog is all set up.  Moving my data is proving to be more complicated than I anticipated so I’ll have to think about it some more.

But in the mean time you can find it here – and I just updated it.  There isn’t much there at the moment though.

More than likely this will be the last entry in this specific blog.

>Back but not for long

>It was a wordpress error and not a problem with the renewal that had this blog down over the weekend. Thankfully my webhost fixed it and without any data lost.

But I’ve set up a new blog and will be moving over there once I get it set up and all my data moved across.

>Site problems

>There is a chance this website is going to disappear in the next few days. My web host are being a bit shit about renewing it. I’ve paid the renewal (which they agree I have) but keep getting reminders to pay. Have already had one support ticket in about this (supposedly resolved) but just got another reminder to pay. Along with the “your site could go offline” warning in it.


>Random Bullet Points of Life

>Item: On Monday it appeared that one of the things I’ve been wanting to do since I heard about it was in fact going to have to be off of the cards for me because of CP.

Item: Yesterday there were two things that were CP crap and using lots of my disability fighting ness and all a bit much.  Particularly because of the guilt trips involved.  And the sighing.

Item: people involved in assisting people with disabilities should not be allowed to sigh whilst doing so.  The “Okay I’ll do that” …. *Sigh* thing is discouraging.

Item: Yesterday and Monday’s Items added together make me fed up and down.

Item: Big decisions have been made which should enable me to be more independant and could possibly put Monday’s Item back on the cards if they work out.

Item: I didn’t freak out when asked a very important question earlier but advocated for myself and am supported in doing so.

Item: I bought yet more theatre tickets yesterday which makes me a bit happier.

Item: Anxiety sucks.

>Gentlemen prefer blondes

>But this cripple does not.

I don’t like the fact that my hair is gradually getting more and more blonde as the week goes on.  In fact the word “sandy” was used to describe the colour of my hair today.  And Sophie said earlier that my hair is a different colour every time she sees me.

This fading is a little bit ridiculous.  I’ll probably be bleach blonde in a few weeks if it keeps up.  I had blonde as anything hair when I was two or three but I’ve been mousy and brunette (and many many colours from a bottle) ever since.  I never missed being a blonde.  I never really wanted to be a blonde.  It always seemed like too much work although I did have a home highlighting kit done once.  It wasn’t anything special.

I really wanted something special in my hair this time… it certainly is special but not in a good way.  And it’s annoying because it cost a hell of a lot of money and was supposed to be a special treat.  They did redo it for me when it didn’t work the first time.  but it hasn’t worked a second either.  Everyone keeps saying I should go back but I kind of feel like it’s too much effort and obviously isn’t going to work.

I’m considering a trip to buy a bottle of dye and doing it myself soon… I like the colour it is now but I don’t like the way its changing and fading.

Or the fact that when my cleaner went “what colour do you call that?” I had to reply “it’s called “this should have come out wild orchid its a dark ish purple shade with red streaks and they tried twice but it didn’t work.”

But the best response to the many “I love the colour of your hair!” “it’s supposed to be PURPLE” conversations was the person who went “yeah, I can see that it’s a lovely new shade of purple… a kind of coppery one.”

Made me laugh.

I’m gonna shut up now.  And I promise not to post such a self obssessed girly way that I look rant again for a long while.  Or at least the rest of the week.

>Catch up post

>I kind of feel like I should write some kind of catch up post with all the little bits of my life I’ve not blogged lately.

  • I’m still doing behind the scenes stuff one day a week at CAB and advising on the other.  And by day I still mean half day, obviously.  I’m really enjoying the behind the scenes stuff – it’s social policy work.  I do stuff like prep letter to go to our MP, type up any evidence, posters so our clients can see what we’re gathering evidence on stuff like that.  Advising I probably enjoy less but I still get a lot out of at times.  The SP stuff is perfect for my disability advocacy side though.  Awareness etc goes between the two.

  • I conquered my fear of sailing alone earlier this year.  But haven’t actually managed to do much sailing lately due to the weather.  And also due to the weather the last twice I’ve sailed I have had to take a buddy or not sail.  The first time it was the case I said “No I sail by myself now, I don’t want to sail if I need a buddy.” but then it went on another week or two and I thought I’d rather sail.  This week I sailed with a guy who is a very talented challenger sailor as my buddy and learned a lot.

  • I fear I am cyber purple no more.  I had my hair done a couple of weeks ago at the hairdressers and it came out a weird pinky red instead of the purple colour I chose.   So they offered me a free redo.  I went for that yesterday (by which time it had faded to a coppery boring colour in only two weeks).  And it is still not purple but its a reallly bright pinky red – seriously noticably hot and fun.  Probably brighter than I’ve had it before.  Mum described it as light earlier and not what she expected when I said we were going for purple.  I like it.  But it’s not purple and my hairdresser says it might be my medication is affecting my hair and making it not take the dye properly.  I don’t know what I think of that, will have to consult with Dr Google at some point.

  • The coolest thing however is that my hairdresser took a photo of me/my hair to put in her portfolio of what she does.  I don’t really know what it’s for or what it does but thats cool.

  • Haven’t been feeling well for several weeks, falling asleep practically every afternoon and generally feeling a bit lousy.

  • It turns out I’m a terrible needle stick.  Well, the nurse didn’t actually say that but being that she tried two needles in my arm and failed to get blood from me and had to resort to a butterfly needle in my hand that appears to be the only conclusion I can draw.

  • I had three normal size tubes and one bigger one of blood drawn yesterday.  Looked like a lot but I’m told it was only about three teaspoons.   Hormone levels, liver and kidney functions, thyroid, blood sugar and full blood count.

  • I’m definitely not diabetic which is a huge relief to me.  My mum worries about that for me due to family history and my love of all things sweet.  My blood sugar was well below the panic level which led to some amusement when I told several people that I have a long way to go before I’m diabetic.  Which totally made it sound like diabetes is something I’m aiming for.  And I’m not, obviously.

  • My book list on this blog needs a serious update.

  • I also need to get back to some writing soonish.

  • Still working on the redesign.

>Ordered my new chair!

>My new wheelchair is on order!

Or at least it should be… I called and left a message for the “Wheelchair Therapist” I saw telling her I wanted it.  They said she would call me tomorrow morning (probably then) about it.

After a lot of advice, research and soul searching I decided that I would take the Action3 they offered me.

The voucher I was offered would in no way have been anywhere near the realistic cost of anything else.  I had two long chats with advice workers from Scope who thought it definitely worth a shot to ask for more funding.  I have no problem with topping up a voucher at all but I kind of felt like they were saying I should have “blah blah blah” on a wheelchair and then trying to fit me into a standard category voucher without taking need into account.

But the research I did into wheelchairs showed that the one I really wanted was a no go.  And I contacted Sunrise Medical to find out who my nearest Quickie supplier is to get advice on which other model would be possible but the supplier never got back to me.  Also they are a hell of a long way away which could have been an issue.  I also briefly tried two other wheelchairs but neither were suitable.

It was just all turning into a lot of stress and I have other financial commitments making things tight right now and some health issues meaning less stress is a good thing.  So I thought about it and figured whilst I wouldn’t have necessarily chosen the Action3 myself there is a lot to be said for all of the support etc I would get from an NHS chair.  If I get it and it doesn’t work, it doesn’t work and they have to sort it out.  If in two years I’ve worn it out, that’s their problem.  If it needs repairs, they do it.  If I had a voucher all of that would be my problem.

And the biggest issue with my having a new wheelchair and specifically the Quickie I wanted is my weight and the size I need.  This gives me time to do something about that and maybe get a voucher in five years.

So I’ve once again said something I said I wouldn’t do.  And I’m pleased.

>Equal Honours

>I was e-mailed a link yesterday to a petition on the 10 Downing Street website.  That’s the official website of the office of the Prime Minister.

This is a petition to give paralympic medalists the same honours that olympic medalists receive.

From the petition:

A gold medal is a gold medal. In the 2009 New Years Honours only 17 of the 35 Paralympic gold medalists, compared to all of the Olympic gold medalists recieved honours. Most of these gold medalists have again been overlooked in the 2009 Queen’s Birthday Honours.

Why? Because the Paralympians had to win 2 golds to be considered for an honour. However, some athletes could only win one gold, such as a handcyclist. Even so, a Paralympian who won four gold’s did not recieve the same honour as an Olympian who won three.

How can these great athletes be overlooked just because they don’t happen to be in the Olympics? We want equal recognition for all gold medalists.

You must be a British Citizen to sign and provide a valid e-mail address.  You’ll be e-mailed a link which you must click on to confirm you want to sign the petition.  You also need to provide an address but I’ve signed these such petitions several times and never had any spam to my e-mail or home address from it.

The petition is here.  I have quite a lot to blog about today and tomorrow so will be back later.  However as I consider this such an important thing this post will be sticky and remain at the top for a few days.  Newer posts will be below when I write them.

>Planning a redesign

>I’ve switched my layout back to an old theme I had on last year (I think it was at least).  I love the primepress theme especially the rotating header function but having had that on since August or September (I think September) last year it was definitely time for a change.

I’m actually working on a customised theme for myself.  Probably Kubrick because that’s what I usually customise and it’s easy.  Plus I mostly know what I’m doing with that which is always a good thing.  Don’t want to be making my blog blow up and stop working again.  Doing that once was definitely more than enough.  In my defence though it was the very first time I ever tried to customise the look of the blog and it was about five days after I set the damn thing up.

Anyway… It’s proving to be more complicated than I first expected.  Mostly because I keep changing my mind about what I want.  If there’s one thing I’m good at it’s being indecisive.  And something I suck at is making decisions.  Working on that, too.  Also every time I see a premade free theme I like I keep thinking  “well  I like it but it would be better like this…”

One thing I was wondering however was if there is any thing anyone who reads this thinks I need to add to my blog designwise.  Because I must admit that one or two blogs I read I think things like “wow she needs to add a home link” or “they write such long posts they could do with a back to the top link” etc.  And then I got to wondering what my readers think.

I won’t tell you what I’m thinking about for my redesign.  Just that I’m thinking of something with COLOUR!

>I’d call this entry toilet humour, but there’s nothing funny about it.

>I went shopping on Saturday.  And in the space of about twenty minutes had two of the most shocking disability incidents I’ve had in a long time.  I wrote an e-mail to trading standards about one of them earlier this evening.  But other than being shocked and thinking it’s rude (jesus wept, i don’t think it could have been worse) there’s nothing I can do about it.

So I’ll blog it.  And I’ll probably blog the other incident too at some point but I should give trading standards some time to get back to me first.

Anyway, I was in Reading shopping.  Specifically I was in Marks and Spencer and figured whilst I would in their I’d go to the loo.  They’ve got a pretty good disabled loo.  The key thing to note here is it’s open all the time you don’t need a RADAR key or any other key to get in there.

So I’m in there, on the loo knickers around my ankles all that sort of thing.  And this random woman took a coin out of her handbag, fitted it into the middle of the lock mechanism, unlocked the door with it and started to walk in.  In the UK disabled loo’s are generally separate rooms so this openned pretty much on to the shop floor.

I was yelling “hang on a minute!!” and she just stopped, went “Oh I didn’t expect there to be any one in there”, shut the door and locked the door again.  Then I could hear her telling someone “oh there’s someone in there, I’ll use the ladies.” and walked off.

When I was done and came out of the loo this other woman was outside waiting and she was like “That woman, she got a coin out of her bag… and walked in… how rude!!” and I was like “yeah it’s soooo rude it’s ridiculous.”

Anyone whose ever used a radar key more than once will likely know that system means you can unlock it even if someone has locked it from the inside.  You quickly learn to be slow opening the door… I’ve been walked in on at least once, and I’ve walked in on people a few times too.

I never minded that, not least since one of the times that happened I found someone collapsed and in need of assistance.* Especially because you either need to provide proof of disability to get your own (meaning you know how it works) or you need to ask a staff member for a key.  And RADAR key disabled loos (and most other locked disabled toilets) have signage explaining the systm and usually where to get a key from so the fact you can’t just walk in is bloody obvious.

But to take a coin and unlock a proper lock?!  Especially without even knocking or anything?! And when it’s obvious that if it’s locked there’s someone in there?  Fucking ridiculous.

*looking back at the entries relating to that incident I appear not to have shared the response I got to my complaint about it.  Which didn’t come until five months later.  And which said they’d had British Transport Police arrest the man for smearing faeces all over the  disabled loo.  The man that collapsed had been on the floor an hour (he said) when I found him.  I don’t know about anyone else but if I had been trying to go to the loo, fallen and then been on the floor an hour I’d probably have ended up doing my business on the floor too.