>Brief Snapshots of Life

>I bought ink for my printer today and was given complimentary chocolate as a result. I find this bizarre but kinda cool. Unrelated to this, I have eaten entirely too much chocolate today.

Earlier today I had a call from a contractor about sorting out my garden. He was “in the area” and wanted to pop round. Apparently a 15 minute drive and a trip on the dual carriageway away is in the area. Who knew?! Anyway I was in the bureau so I said yes but after half one. Which was no good, he clearly meant RIGHT THEN. We settled on tomorrow but he couldn’t tell me a time just that he’d call first. Then he said depending on something or other he might come this afternoon (he didn’t) or, you know, possibly Friday. Given the sheer number of months and amount of chasing it’s taken to get this far I fully expect it to be at least March 2012 before he gets here to quote and possibly August that year before the work is done. If I’m lucky…

Speaking of the bureau, I am not advising/not in (a bit of both) for a couple of weeks. A good thing, I think. Hopefully a break from clients and all that related stuff will be good for me. It can get a little much at times and it’s not easy! Plus there’s the most people not realising we are volunteers aspect although that very rarely bothers me.

Checking my bank statement it would appear I have tickets to the majority of the Paralympic events I requested. Possibly all but two. Very exciting! And… Judging by the amount they didn’t take I’m wondering if I’ve tickets to both the opening and closing ceremonies. I’m desperately trying not to get my hopes up but I can’t get my head round where the £25 they didn’t take comes from (the amount they took was £25 less than the maximum) if one of the things I’ve not got is one of the ceremonies.

We went to see Sister Act The Musical on Saturday. It was totally different to the film but amazing. I really loved it! Plus when we got back to where my dad picks us up, Mum pointed out that that I’d wheeled all that way without needing to rest, reposition within my chair AND most importantly without getting breathless. So much yayness there.

>Another readathon update

>I’ve read 60 pages of The Secret Life of Bletchley Park by Sinclair McKay and 105 pages of Tarzan of the Apes by Edgar Burroughs since my last update.

Secret… Is research for my nanowrimo novel and I’ve been taking my time with it over the last week or so. It’s really interesting and well written. I feel like I’m learning a lot from it.

Tarzan I started fresh tonight after wanting to read it for a few weeks.

>Readathon Check in

>I think I’ve read about 450 pages.

Welly Walks and Biscuit Baking by Hannah Ensor
The Babysitters Club – Abby’s Twin by Ann M Martin (a load of rubbish)
The Summer Before (The Babysitters Club prequel) by Ann M Martin (kinda cute, I wouldn’t read it again but I liked it)
Sister Act The Musical Programme. That was interesting. We went to see the musical this evening and it’s really different to the film but oh. so. good. I loved it.

I’ve also listened to about an hour and a quarter of the audiobook of The Remains of The Day which is good and I’m getting really into. I think I’ll finish that on Monday most likely. It’s about 9 hours long and I have a little less than two hours left.

>Welly Walks and Biscuit Baking by Hannah Ensor

>I decided to start the read-a-thon off with something super easy and read my friend Hannah Ensor’s new books which are released today.  I’m also going to pop up to her book launch a bit later and I’m looking forward to it.

Hannah is a writer and illustrator who uses her trademark stickman style to use humour to education about disability.  Her two newest books which come out today are Welly Walks and Biscuit Baking – stories aimed at children aged between 2 and 5.  Each includes a character in a wheelchair but at no point are the words “disabled”, “disability” or “wheelchair” mentioned in the stories. The wheelchair user just is.

These books are so much fun.  I liked them both but I think Biscuit Baking is my favourite.  I love the colour in them too, it really made the pictures pop.  Plus I am once again left in awe of how much life and character Hannah manages to get into simple stickmen characters.
I really recommend these books (and Hannah’s other books and products, her wheelchair signs are a particular favourite of mine). I know several people who’ve had kids this year and I want to buy these for them.  But as they are all pretty much still in the newborn stage I’ll have to hold off… for now.
£1 from the sale of each book goes to Whizz-Kids – as Hannah describes it:

Who help children enjoy fun and full childhoods, get the right wheelchairs for them at the right time, and learn the skills they need – all without pity or patronisation. With loads of input from the kidz themselves, it is run with humour, respect, positivity, professionalism and cheek. A charity after my own heart.

It’s also a cause that I too believe in.
Hannah’s blog is here and her website is here.  The books are available from available from the publisher 2QTWHSmiths,and other similar places. I have been told that Amazon is taking a long time to process orders.

>Looking Back – and then briefly forward

>I wrote my first ever blog entry almost 11 years ago.  A couple of days ago I started playing with the “you might also like” feature on this blog and started reading some of my older entries (which go back to March 2006 on her as my Wheelchair Princess archives are also here).  And then yesterday I went back even earlier and was reading stuff from 2003/2004.  This evening I went all the way back to the very beginning 8th November 2000. And it really hooked me in.

It’s really interesting going back all those years and seeing what I was up too then.  My style back then seems to have been much more “what I was up to” than it is now.  Possibly part of that has to do with it being a diary rather than a blog.  Diaries and blogs were different things you see (totally not sure what the difference was though other than blogs having multiple entries to a page and diaries just having one).  In many ways I think I miss that style, I should make more of an effort to write about things I’m doing rather than just thoughts and book reviews.

I’d implied certain things and now I have no idea what they were “a certain person is annoying me again” that sort of thing. And at times I have an idea who it probably was but at others I’m clueless.  Plus I was much less aware of internet and personal safety – some of the comments I made about my friends with their names are completely inappropriate. Jeez I’d never write that stuff now. And at one point I named both the very small village where my Gran and Grandad lived and the town I live in.  The name of the hall at uni I lived in is used liberally too.

The other thing that it made me realise was just how long I’ve had depression.  I was diagnosed in Feb 2003 and I’ve always said that I was depressed for most of a year before that to a greater or lesser degree (things came to ahead in late 2002 but it took until Feb 03 for my friends to talk me into getting help).  Reading entries from early 2001 however I make numerous references to being depressed and struggling emotionally so perhaps it’s been even longer than I remembered.  I’m not sure how I feel about that

Several of my earlier years of blogging are lost and I’ve said before that in some ways thats a good thing because those entries make me cringe.  But actually tonight even my very first blog entry didn’t make me cringe.  It did however make me think I should do something to save all those entries just in case.

It’s very interesting looking back like that – I could do with going to bed relatively soon or I’d probably still be doing it right now.  As well as looking back however it’s got me looking forward.  In five or ten years time will I be looking back at this entry and the others I’ve written this year remembering and wondering?  I think my current blog entries wouldn’t be such a good memory aide and the feelings and memories wouldn’t be so vivid.  I think I need to change that.

>How am I really?

>Last week I had another attempt at this putting myself first lark and shared with a couple of people that I was sorry but I couldn’t provide the support they were looking to me for as I’m so busy and have a lot going on.

The automatic assumption to this seemed to be that this was a very bad thing and a couple responded along the lines of “sorry you’ve still being dumped on hope it resolves”. That’s the wrong assumption however and I don’t know where it’s come from. I am very busy and whilst it’s true that my mental health is at a bit of a low ebb having taken a hit from the treatment I had for my CP in the summer I’m liking being busy.

I’m doing my usual CAB stuff, and writing book reviews. Plus a friend and I are now jointly running our local nanowrimo/writers group. On top of that I’m trying to make several crafty gifts (so far unsuccessfully) and helping to organise a conference for International Day of Disabled People in December. And I’m writing when I have time.

All of those projects are very interesting and enjoyable in their own way. They also come with various frustrations, most of which I hadn’t anticipated. It’s good though and I feel like I’m learning stuff and making a difference. Add it slightly frazzled mental health and it’s clear I’m being pushed more than is comfortable but I’m bending and not breaking. At times it’s felt like much more and I’ll snap but not right now.

I’ve had both Dr and Nurse appts in the last two days and have talked depression with both (I’d specifically gone to the dr for that but had gone to talk weight with the nurse) That was very useful (although slightly surreal in that when the Dr heard I blog he googled it and started reading it) especially the nurse as she’s known me for years and was able to point out how far I’ve come and what I’ve achieved.

So, how am I? Really?

Tired after three long days. Really busy doing interesting things that at times annoy the hell out of me. Learning lots and occasionally meeting new people. Fine when I’m out but majorly lacking in motivation at home. Down but sane according to the GP, just in need of some new coping strategies (for which I’m getting plugged back into somethings which helped previously). Too hard on myself. On the whole it’s been a small struggle but there are good things in there and I’m finding moments that make me laugh and smile more than I’m finding ones that make me cry.

So, how am I? Really?

Fine, ok, not too bad, getting there. That sort of thing.

Or I will be soon

>Yet More You Know You’ve Got CP When…

>…something gets said to you and you’re frustrated but not at all surprised by it. When you tell a friend however, she IS shocked and says that it makes her despair of humanity.

…you get annoyed that someone else isn’t a wheelchair user because you’re having a ridiculous conversation in which you can’t make them understand your point. If they were a wheelchair user? It wouldn’t have even come up.

…you didn’t know who that woman who said “hi Emma how are you?” as you wheeled past was for a minute or so. Then it hits you. She’s a receptionist at the Doctors.

…your best friends include a former physio of yours and someone who was your carer.

…people don’t remember your name but when asked who they mean say “the girl in the wheelchair”

…you plan to take your wheelchair, your walker and a toilet surround when you visit your family. For the afternoon.

…your powerchair is a source of great amusement to drunken football fans at the train station who wonder what will happen if they grab the joystick and dare each other to do it (they didn’t try it)

…people who barely know you tell you off for taking back language and calling yourself a crip but at the same time have no problem using hate speech such as the R word when joking with friends.

…you get a phone call asking if you’d mind using the gents toilets when you go out as the ladies isn’t accessible. And although you don’t like it, you’ve done it before and you’ll do it again.

…you really enjoy writing blog entries like this!

>First Impressions

I’m terrible for making snap judgements, especially when I first meet someone. I think it’s kind of similar to how I automatically assume that everything that happens to me is because of my CP even when it blatantly isn’t (which is something I got very stuck on and very upset about yesterday). Both things related to thinking I know exactly what the situation is, what’s going on and what’s going to happen next. I’m finding a lot lately that I’m having to reevaluate my assumptions – those pesky first impressions.

Recently I briefly spoke with someone and within a couple of minutes I’d decided I didn’t like them. Part of it was an innocuous but very annoying comment they made. But the big thing was this: I was moving round a tight space. It’s one I do often but it’s a bit of a squeeze and to save time I’d decided to go backwards a tiny bit then turn. I misjudged it slightly and needed a second attempt. My left foot had spasmed off my footplate sometime before this (before I met them) and the person I was talking to obviously thought my foot was part of the problem as without saying a word reached down and moved my foot back onto my footplate. Not on. Rude, inappropriate, belittling and just plain wrong even though they clearly meant well. It spasmed back off immediately as well.

So I was prepared that we would have our conversation and we’d both do what we needed too but this was most definitely not going to be someone I thought well of afterwards. I tried not to let on they’d annoyed me and after a few minutes calmed down.

And as we talked I came to realise my first impression had been wrong. They weren’t the sort of person I’d willingly spend time with but they weren’t a bad person or as patronising as I’d assumed from their earlier actions. In fact as they shared a little of themselves beyond what had bought us together I came to see something of who they really were. Someone with a lot of courage who could teach me a lot.

Then there’s tonight. I decided to go for a bit of a wheel in my manual as I needed both fresh air and exercise. My neighbour has this friend who it seems is always there. He’s basically harmless but full of it and often talks at me and no matter what I say will not stop (true story I once went in from my garden because nothing I said would get him to go while I was still there). Others who know him say the same thing.

As I wheeled up the path from my front door the friend came out of next door with his girlfriend. He said hello and asked how I was, quickly catching up with me. All I could think was how I shouldn’t have left when I did because knowing him he’d grab my chair and start pushing.

But he surprised me. He asked “are you going this way?” and when I said no replied that he would have offered me a push if I had been. Then he commented that it was good I was wheeling myself as I’d build up my strength. I agreed and told him I’d have said no even if we’d been going the same way for that very reason. His final comment was that his sister has Spina Bifida and uses a chair too.

I was surprised by both of those conversations but in a very good way. First impressions can be very important – but I’m definitely going to take a bit more time before coming up with them from now on. And be more open to changing them if experience shows me I should.

>You Know You Have CP When…

>…You aren’t sure that getting discharged from physio is the good thing everyone else is making it out to be.

I went back to the hospital on Wednesday and saw two physios and an orthotist. They were very pleased with the progress I’ve made with the standing frame (and so am I). I’ve been able to maintain the improved range of motion in my ankles and my feet are still looking what I consider to be wrong – they used to turn in a lot and I can’t remember a time when they didn’t. Now they are straighter (I believe my talus – one of the bones in the foot – is now in neutral position rather than rotated inwards).

I do keep looking at my feet and thinking they don’t look right. But the fact is they are right for the first time in years or maybe even ever. A friend of mine popped round on Thursday and kept commenting how good my feet and legs look now (my spasticity is better controlled and I can keep my knees bent for a few minutes now if I concentrate rather than automatically spasming and locking out straight) and saying she couldn’t stop staring at them. I was joking with her that her secret is out and that I now know she’s a leg woman and attracted to me for my legs.

Anyway, back to the physio – my posture has improved which I believe should slowly help with pain. And my legs appear stronger meaning my standing transfers are better. I still have to use my arms to do it and always will not least because I have rubbish standing balance. BUT I am now using my legs more to push myself up in conjunction with pulling with my arms rather than just grabbing hold of something and pulling myself up – which had resulted in me pulling a grab rail off the wall at least twice.

The orthotist said that I would get no benefit from splints or another type of orthotics that I’m not getting from using the standing frame. I was very pleased by that! I’m actually quite enjoying the standing.

So I’ve been discharged from physio but will see the consultant before Christmas and there should be a physio in that clinic. I am a little apprehensive about being discharged but figure it’ll be ok. The interesting thing about it is that people keep commenting “well done” or “congratulations” when I share my progress and I think it’s a weird thing to say – because I can’t see that anything big or amazing has come from this long, hard process. Then again as I sit here writing this I’m beginning to realise just what it is I’ve achieved – with the help of various physios and all the other people who have supported me. It might be me that’s benefitting and my legs which show these small improvements but I couldn’t have done it alone.

>Life is short


I just found this image on Facebook via Shelley and couldn’t resist sharing. It’s a text based image sharing a manifesto for living based on the idea that life is short and is from Holstee. As a side note I believe the version on that site to be an accessible (described in the html tags) image.

Beautiful isn’t it?

It’s almost a shame that I didn’t find this yesterday when I was pondering why we do things we don’t like and don’t do things we like. But actually I think I like that it’s in a separate entry.