>I’m still thinking a lot about “The Hardest Part” and what I might like to say/write about that (if anything) for the next Disability Blog Carnival.

But today it strikes me that “The hardest part” for me at least is no one little part. it varies. From week to week, day to day and even hour to hour. It varies. Based on my perspective, my hopes and dreams, the way I feel physically and mentally and what else is going on around me. Based on what others do and what others say.

This morning I had a long conversation with someone. He grabbed me first thing and said we needed to have a chat at some point today. I immediately got all paranoid and freaked out and was like “oh my god bad things are about to happen!!” Waiting for him to come back and talk to me drove me crazy – I don’t deal well with the waiting!

It was mostly asking me if I would do something and offering me another opportunity; it was a good conversation. And he gave me something of a pep talk. He has issues of his own and we discussed others attitudes to disability; my own attitudes to my disability and things like that. It was something of a wake up call to me, gave me a lot to think about and in some ways it was hard to hear. But it was interesting and it was good. I want to write more about that but I need to think about it all properly first.

A while back I met someone who does some volunteering helping disabled people do various sports. One of which (diving) isn’t something I’d thought of doing but is something that given the opportunity I would love to try. So as soon as I heard he knew about that sort of thing I grabbed him and put the question to him – what would it take to get me doing it?

He said he didn’t think my CP would cause any real issues and gave me details of the organisation he volunteers through. There is an opportunity relatively soon for me to maybe have a go at this so yesterday I looked it up on the ‘net and e-mailed them.

The fact that I’ve got CP? Probably not a problem.

The fact that I’ve got depression? That’s a problem. And I need medical clearance from someone who knows me and also who knows diving – which probably rules out my own GP out.
It’s a safety issue and I understand that and why they say that.

First thing this morning I probably would have said that the hardest part was others attitudes and silly niggles and annoyances like that.  At lunchtime I was really thinking that I would write about some of the stuff we talk about this morning for the carnival, because that was hard.  But right at this moment being stopped by my depression – that’s the hardest part.

Maybe the correct answer is that there is no one true “hardest part”.  Maybe it just comes down to perspective and time and personal wherewithal at any given moment.

>Getting There

>I am feeling mostly better.  Really I just need to build my energy stores back up.  It really scared me how ill I felt and how much I hurt.

And deal with codeine side effects if you know what I mean… the amount I took is well with the prescribed limits but given that I rarely take it, taking three full doses in 24 hours and didn’t keep much fluid down for a while had those tiny white pills going “side effects… side effects… I’m gonna give you side effects… muhahhaha” and, well, they are still resolving.

I think there must be a few viruses doing the rounds – out of five advisers this morning we had two of us who were getting over viruses and one who was also kinda out of sorts.

I think there will be lots of interesting (and in some cases, fun) developments soon.  But that’s a story for another day.  Or at least, another time.


>A while back I spent some time browsing the Blog Carnival site.  I love the Disability Blog Carnival and I was wondering what other carnivals there are out there.  Sadly there are a lot of carnivals listed that would interest me but which seem to have been abandoned after only one or two editions.  That makes me very happy that our very own Disability Blog Carnival is going so well and will soon be publishing it’s 34th edition.

Anyway, I just got a notification that the latest Carnival of Quotes is up – and that an entry I submitted is included.  I love quotes and I love this carnival which I’ve been following for a little while.  I’ve not had a chance to read many of the other submissions yet but this does look like a great selection – particularly the quotes on martial arts which have been included.

And if you’re looking for The Disability Blog Carnival, the current edition is over at Andrea’s Buzzing About and can be found, here.  The next edition will be at Reimer Reason a week on Thursday and has the topic of “The Hardest Part.”  Which I think is a Coldplay lyric?  It’s a topic that’s really making me think and that I’m looking forward to tackling.   Submissions can be made through this form

Anyway, I have some carnival submissions to read… and some thinking to do… I love the way the quotes make me think and muse and generally ponder life.

>Well, I would laugh…

>I really would.

Only, ow, not a great idea right now.

I am a poorly sick crip right now.  I literally ache all over, my entire torso hurts (and ye olde pain meds are doing an “eh” job).  And I’ve been participating in pukefest 2008.  Hopefully that’s now over with but I do still hurt 🙁

Mum just dropped in to bring me a small portion of food.  She let herself in and found me in bed (actually the phone had woken me when she rang to say she was coming).

“OOOOh my poor poorly girl.” says she.

following that up with

“Get out of bed!  You won’t sleep tonight!”

And, that, my friends, is what my family consider sympathy.

>Super Crippled Girl does NOT save the day.

>Well, the good news is Christmas is safe for another day.

The bad news is Super Crippled Girl will not needed be to ensure the safety of Christmas.  And she’s been told she won’t be needed tomorrow.

So I guess I don’t get to run around in a cape and tights tomorrow after all.

I’ll gladly give the saving of Christmas a miss.  But as for the tights and cape bit?  I was looking forward to that 😉

[I was supposed to be helping run some CAB outreach stuff tomorrow which is called “Save Xmas” when I told a friend she said it made her think of me in a cape and tights.   The idea of the outreach stuff had been freaking me out a little but the cape and tights idea did make me laugh loads – how fun would that have been?!]

>Out of Control

>You know how in 2006 and before that I struggled to take my medication and rarely did?

And how in 2007 I took every single dose I was supposed to.

Well, that med taking streak has been over for a while.  It stopped with a day when I thought I still had the pills to take but when a big part of me was going “uh, I think you already took them.” and that was fine, i just got confused and it was safer not to take them.  I took them the next day.

Only, I’ve not taken them for four or five days now and it’s second time (at least)  that I’ve gone that many days with no pills.

It really is no wonder that I feel like my weight is out of control, my house is a mess and i can’t cope with it, my spasticity is ridiculous, stupid things are making me either anxious or angry.

It’s really no wonder that I just feel out of control.

But, that said, I am thinking that the way forward for me might be for the drugs to be reduced and then slowly removed.  Because a big part of me now looks back and sees where I was and where I am now.  And thinks that maybe the problem with my struggling without them now is the guilt.  Is the knowing that I should have taken them and yet I haven’t.  I’m not really sure I need the drugs any more other than as a “mental comfort”/support thing.

It wouldn’t be the end of the world if it didn’t work.  There’ll always be prozac in the world if I need it.  But right now I think that maybe I don’t, any more.

>And Fireflies….

>Firefly Scarf

Close up on the details of my Firefly Scarf

I first started knitting this on Feb 29th.  And then ripped it out three times for various reasons (love the yarn but it’s not easy to fix mistakes in!  Particularly not when you drop the whole damn project off of the needles!)

However the fourth time was the charm and I started it on Wednesday night and finished it this evening.

I used slightly less than 2 balls (25g each) of Sirdar Firefly and 12 mm needles.  I think the colour is called Aquamarine, I bought the yarn in September and truthfully can’t remember.  Actually I think the aquamarine might be the one with greener tints to it, kinda turquoise.  Whatever.  It took way less yarn that I thought it would – going by how much was in each ball weight wise I bought four balls (and have two and a bit left) but it never occurred to me to look at how much yardage there was per ball – and this is a very light yarn.

It’s not as neat as I would like but I love it and am very glad I persevered.

I think I will probably make another scarf with the remainder as a gift for a friend.  But I think Zeeby’s Bag is probably going to be my next project.  For knitters, if you are a ravelry member look it up on there.  It’s from the Stitch n Bitch book by Debbie Stoller.


>On Monday I opened the door to let a new carer in and was greeted by the words “Do you remember me?”

I hate that question. I meet loads of people through having carers and CAB and other stuff and they always remember me and either I don’t or I do once they mention knowing me and I get a few minutes. I can meet three or four new people every time I’m at CAB but of course I’m the only person they deal with and with my disability being visually obvious I get remembered either by name or as “the disabled girl”

Anyway I looked at her and I thought she looked familiar and figured it had to be this very very occasional carer I have but haven’t had for over a year. So I said yes I remembered her.

“blah blah Sophie”.

“Sorry, what did you say?”

“Wow you really look like Sophie.”

OK, time for a rethink, it’s someone who knows my sister. ARGH

“Hi. It’s Jess isn’t it?”

She smiled and said yes and I sighed with relief that I figured it out (I HATE having to admit not knowing who people are when they know me).

I’ve had carers my own age before. I’ve had carers younger than me before. I’ve got an occasional carer now whose only a year or so older than my sister. I’ve had carers old enough to be my mum and ones old enough to be my Nan. I’ve had carers I went to school with. But for some reason have one of my sisters friends from primary school come and do care for me was really strange.

I don’t think it’s necessarily because she’s the same age as my sister… just because I remember her as someone who used to run around playing with my sister when she was a child, they used to make lots of noise and bug me, get in my way.

It’s easily 10 years since I saw her and I can’t say I’ve thought about her. But it was just hard to take her out of that box and move her to another one.

I got on well with her and I was texting Sophie trying to get her to guess who was with me. And although I don’t think she will be here regularly (she’s working during uni holidays) I’d be happy to have her back here.


I went for a walk with Soph and Milo yesterday. And Soph was telling me that Jess wrote on her facebook wall about coming to do my care. I did have to laugh.

“She wrote that she met you and was like ‘oh your sister’s lovely.’ I was like “what’s that all about?! Where’s she got that from?!”***

I love you too little sis!

***Edited to add a small disclaimer:  I just repeated that to my mum and Soph swears she never said that.  I however swear she did.  So that may or may not be true.


>I bumped into Phil on my way home from town a little while ago.  He was driving and pulled over to talk to me.  We did the how are you, how was your holiday general chat thing.  He asked if I needed something to which I went “that’s a very open question…” and he said he’d take that as a no.  And as he was leaving I said “love to Pat”.

But how strange and how hard it was not to say “how’s Stevie? Did he enjoy the trip? love to him”.

I’d been thinking about how it’s nearly a year as I was wandering back from Sainsburys but seeing Phil and thinking that… it almost hit me again, it brought it’s realness home.

How I wish things weren’t like this.

And, changing the subject slightly, I must comment on the fact that I never know what to think/say/feel when people refer to my friends with disabilities who have died as being “all better now.”  I’m not sure I like it or agree with it.

But I have knitting to finish and a new episode of Torchwood to watch so I shall leave that topic to another day.