You Know You’ve Got CP When…

…something you buy regularly in the supermarket gets moved from the very top shelf to the very bottom shelf. And as you’re trying to put two packets in your basket all you can think is how much easier it was to reach it down from the top shelf.

I am aware how completely ridiculous that sounds but its true! Must admit I laughed at that.

The seat riser on my powerchair makes moving up to reach high things so easy. And was worth every penny. The only part of sainsburys that properly stumps my independent crip streak now is frozen food with its cabinets with doors that open outwards.

But leaning down and across isn’t easy (but is vaguely doable) as the lateral supports and spine align bits which keep me from slumping stop me. And I’ve yet to hear of a wheelie that drops you down.

I do love my new Quickie Salsa (well, I guess it’s not so new now) with all its bells and whistles and the independence it gives me.

So I’ll just accept that there’s now a new definition of wheelchair accessible in my life.

And if you see a crip in a red powerchair reaching for low things in Sainsburys and giggling? Well, now you know why.

(For more tales of the supermarket on wheels with a definite make you smile factor check out Hannah’s post on the subject

Speaking Out

A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy.  It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.

I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press.  Or annoyed by the use of the term suffer.

Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.

Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it.  I don’t think I’ve felt like I belong in an online disability group like I do here.  I also posted a similar comment about the term suffer on twitter.

And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is.    The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.

But I don’t want people to pity me. I want people to know that CP isn’t a disease.  It’s a disability, a life long condition that I live with.  And I don’t suffer from it.  I have it.  It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.

Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case.  That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.

I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar.  The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think.  I’d never manage to reach out and change anyones opinion.

I’ll always speak out whenever I feel I should and that I can.  That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.

But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.

I like my disability, I’m proud of it and I love my life.  I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.

I want that for other people with disabilities too. I want disability to be seen as a good thing.  And OK so others think my brief comment is inappropriate.  I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.

That’s so important I can’t describe it. And if I can do something about it, I always will.

Time and Change

“Time, which changes people, does not alter the image we have retained of them.” ~ Marcel Proust.

I was looking for quotes and I came across this.  It’s very apt particularly as I seem in be in a period of ongoing change in my life at the moment.

I think some of the changes may have the potential to be very good for me once they’re finished with.  But not all of them were my choice or are under my control.  And a couple of them are pretty scary.  I had a pretty big panicked cry over one the other day. Not fun.

I know that once this is sorted out I’ll be OK.  In some shape or form.  But that might not be one I’d like or have chosen.  And that’s pretty huge.  I’ll be OK.  That’s what matters.  I’ll be fine.

The journey will probably suck but in the end all will be well.

I was thinking though that sometimes I can’t understand who I am any more.  I don’t see the girl I used to be under who I seem to be right now.  I don’t see me.  Emma is lost, perhaps.

Then I read this quote and I realised that I know who I am right now, what I’ve done, where I’ve been, what I want from life etc.  But my mental view of who I am, the girl I picture when I think of myself and how things used to be?  That needs to catch up a little after all the changes I’ve had.

I’ll be playing catch up for a long time perhaps.  And maybe I never will see where I am in the moment when I picture who I am and set expectations for myself.  But I suspect that’s normal and the same for everyone else CP or no.   Life isn’t static, after all.

But CP sure as hell complicates things.

Gold!

“And on this banner day during the Oxfordshire Crip-Olympics 2012 the Gold medal in the standing frame event is awarded to Emma Crees.

In a breathtaking performance she wows the crowds and sets a personal best of 40 minutes standing in the frame.

A well deserved gold for the talented CPer who just a year ago was a novice in the standing frame with no expectation of ever achieving greatness.

The grin on her face when she realised just what she’d managed has to be seen to be believed. A gold medal day to never be forgotten.”

And the crowd goes wild….

♥ Emma

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ Emma

A year later

OK so it’s not quite a year later but it’s as close to a year later as I’ll get.

Last July I had my first lot of botox and that was then followed up with serial casting in August. The TL;DR version for anyone who doesn’t want to follow that link to all my entries on it is as follows. Serial casting was not a particularly fun experience but I saw a lot of improvement. Unfortunately not as much improvement as to get my feet into a “normal” position but the amount (approx 20 degrees improvement in range and position improvement) is agreed by everyone to be huge.

Yesterday I had my four monthly appt in spasticity clinic.  It was a good appointment but has had me, my sister, both of my parents and one of my besties going “oh, I didn’t expect that”

It was the quickest I’ve ever been in and out of that hospital.  Of course a big part of that is the fact I didn’t go on hospital transport but my dad took me.  Spasiticity clinic is a physio, a nurse and a neurologist.  And my neurologist always runs really late.  It doesn’t both me because although I know people who can’t stand the guy I’ve always felt like I get all the time I need, I’m not rushed and I can’t ask a stupid question.  Plus he’s very open to hearing how it is for me. Anyway I had I think the second or third appt of the clinic but I was the first patient to turn up (I was ten mins early). I wheeled in and she said she’d call the drs down. I ended up going in a few minutes early and we were at the car at 10.05 having made a loo stop on the way out (my appt was 9.40)

My physio from last year is on maternity leave I think and I don’t think I’d met the one that was there before. She had a good look at my legs/feet in my chair and then the Prof came in and asked if they could examine me on the bed. He had I think two observers with him, not sure who they were.

The really good news is that I have maintained all of the improvements I got from the casting.  That’s huge. Really huge. I think it’s unexpected too, usually a there would be some deteriorate if not complete deterioration expected (I think). Keep up with the standing frame and increase the time if possible. Work on a goal of an hour. My feet haven’t started turning in again like I thought they might have so no new contracture.

But it is now official that I have both spasticity and contractures. That’s just basically confirmation of something we’ve all suspected for a long time.  I am being referred for surgical assessment to see if it’s time for a tendon release proceedure on each of my ankles.

Growing up I didn’t see a neurologist, I was assessed once or twice a year by an orthopaedic surgeon.  I saw a really lovely man who always greeted me with “hello sunshine” and made me feel special. Most of my friends with CP saw a different consultant but I was born with a hip problem (dislocation) and was seeing my consultant about that before my CP diagnosis so I stuck with him.

The surgeon I’m being referred to? Is the one that my friends always went to.  I’ve heard very good things about him. So that’s good.  But I am a little sad that my guy has retired and I can’t go see him

The aim of a release would be to help maintain my independence and improve my standing.  The issue is that I’ve had it done twice as a child (that was amusing, I left my dad in the waiting room but when the prof started asking about previous surgeries I suggested getting him in as he’d know better then me. So he did but then basically didn’t ask Dad any questions) and no one there seemed sure if a third go is possible. I need a definite answer abou that before any decision because with CP contractures will always develop. And I’m not sure I want to use my last shot at release surgery a 30 when I’m managing well and at 35 or 40 or later I might need it more. But then if I do decline to have it now am I running the risk that at 40 I need it but things have deteriorated to such a point it can’t be done?

Lots to think about.  And a few month wait to clinic I think.

In the meantime I had six more lovely botox injections and I’ll wait to see what the surgeon says. That will be a joint clinic with my neuro. Depending on when it comes through I may skip my next spasticity clinic appt.  Basically if it’s in a couple of months or say six months then I’ll go back in four months as planned for more jabs. But if I see the surgeon around the time I’d be due jabs they’ll combine giving me them with it even if it’s not in spasticity clinic.

>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.

>(lack of) Progress Report

>I returned to the hospital last Thursday having had a couple of days without the casts.  It was very nice to be able to get up and get dressed when I wanted rather than when someone could help.  And to wear trackies and go sailing and have showers!  But equally I was very frustrated to not be in the casts because it almost felt like giving up without giving it the best possible shot.

My physio got me back in a standing frame for a few minutes when I got there and she measured the angles of my ankles which were the same as they’d been on the Monday.  That was huge because apparently she would have expected some deterioration.

 I was and still am a bit confused by the measurements she got as for my whole life my left side has been substantially worse than my right but this time the left was a lot better that my right.  That could be something to do with the way I stand and compensating.  I didn’t really understand.  I stand in a really screwy way which she tried to demonstrate to me so I could see the difference between that and how I should be standing but she couldn’t do it as she kept losing her balance when she tried.

They put me back in casts again, basically at my request.  She thinks it’s unlikely they’ll be any further improvement although when I got upset and started crying that got changed to “well you never know”.

The angle of my ankles in the casts is the same as it was standing which apparently is no improvement but I remembered after I left that when I first saw her at the beginning of July my measurements were substantially different lying down to standing – and the casts were done whilst lying. So maybe there is a very slim possibility it’s better.  Confused.

I’m going to borrow a standing frame from the hospital to have at home.  When I go back in a couple of days to have the casts removed my Dad is going to take me so we can bring it back and he can learn how to get me in it.  I’ve also been told that they won’t do any more casts.

I’ve been referred to orthotics regardless in the hope they can do something to help me out.  Night AFOs were mentioned (deep joy), special inserts for my shoes and wedges are also possibilities I believe.

And that’s the latest installment of Emma’s Adventures in Serial Casting…

>Adventures in Serial Casting

>This blog entry should have published last Wednesday, the 10th but didn’t for some unknown reason

So, the last time I updated about this was the morning before I went back to have the first lot of casts removed.

Those had been on for three days and when they were removed I had a small increase in the range of motion in my ankles – approximately five degrees which was described by the physio as small but I think actually is quite good.

I also had a substantially improved foot position, especially in my left foot as although both of my feet had turned in my left was the worst.  Ever since then I keep catching site of that foot and thinking it looks wrong and really weird to see it in a normal position.  I can’t remember the last time it was like that.  You know you’ve got CP when…

I was put back into a second set of casts which were removed four days later (as they were on over the weekend).  I got on better with those although I did have a blind panic moment late on the Saturday night when my foot started hurting and I convinced myself that my toes were going a funny colour.  My parents came round and we decided it was OK to wait and see until the morning.  I could wiggle my toes as much as I always could, they weren’t cold and when my mum pinched them they went white and immediately back to normal when she let go.  I still don’t know what caused the pain (my physio had a really good look when she took them off but couldn’t spot anything) but it had gone Sunday morning.  I’d been caught in the drizzle earlier that day and wonder if a touch of the dye on the cast shoes had ran onto my toes but I guess I’ll never know.

When the casts were removed it was obvious I’d had no further improvement which was disheartening.  The physios (it takes at least two to do casting) got me up in a standing frame for a bit and then doing some walking.

There was some discussion about finding out if I’m a candidate for another tendon release on my ankle but I made it very clear that even if surgically it’s an option for me (having had it done twice as a child there is a question mark over that I believe), it’s not really one I’m prepared to consider.  If it comes to the point they think it needs more than mentioning in passing I’ll go and discuss it but it would take a lot of convincing to get me to agree.

I asked if it was worth putting more casts on just to give it another shot and the answer to that was basically they didn’t have time then as my appt time was nearly up.  I was told that if my feet had deteriorated by the time I went back later in the week they would recast me to ensure I maintained the improvement I’d had and asked to do as much standing and walking as possible before I returned.

I did absolutely loads of standing.  Not a level I can maintain regularly but I definitely gave it my best shot.

>The Crip and The Casts

>I tried yesterday to post a video blog from my shiny but for some reason it won’t upload.  I will endeavour to cover the main points and do so quickly as I have hospital transport coming and was told to be ready at 9.15 (8.44 now).

Casts went on Monday.  that day was a huge struggle and ended in a crying, shaking, sobbing, puking meltdown that necessitated my calling my Mum round at 11:30 pm and unfortunately getting her out of bed in the process.  Basically I couldn’t get out of bed without help, I got my skirt all tangled up, couldn’t get it up or down and it was catching in my wheels, it was too hot and the casts were a little uncomfortable due to the stretch and when I’d tried to transfer into my powerchair earlier that day hadn’t managed it meaning I thought I’d be housebound.  Mum got me sorted out and left a little after midnight I think.  She came back round at 6am to get me up for the loo again and then I went back to bed (definitely needed the rest!) and Dad came in at 9 on his way to work and helped me up.

We’ve managed to solve the bed problem by putting the mattress from my old bed on top of the one on my new bed which means I have a ridiculously high bed but I can get out of it without help!  The loo I was also finding a little low which is strange as both it and my bed are an easy height usually.  I keep a toilet surround (with bars and a raised seat) at my parents house and my sister dropped that in for me.  Tuesday and yesterday I was able to transfer into the powerchair with help and as I’ve gotten used to the casts have been finding that easier and can just manage it solo now.

When I left the hospital on Monday I was given paperwork with instructions which included going to A&E if I had any problems out of hours (and a letter to take with me).  I’m sure that if I could have found someone to take me I’d have gone Monday night, at the very least I was adamant that I was going back to the hospital first thing Tuesday and kept saying I couldn’t do it.  But it didn’t come to it and it’s been a struggle at times but it’s been OK.

I saw my GP about something else yesterday (for which she gave me some lovely Erythromycin meaning I am once again on two antibiotics) and she told me that the hospital hadn’t even told her they’d seen me let alone that I’ve been multiple times and what they were doing to me.  Don’t think she was best impressed.  I wasn’t surprised she didn’t know all of it as my consultant rang me Monday afternoon to say he’d not made a note of what we’d agreed and what plan had been made for going forward and could I tell him? But i was surprised she hadn’t even had a “we saw Emma for physio and are sending her back to wheelchair services and to the consultant” type letter as I was first seen practically a month ago!

Apparently my casts may come off and stay off today.  This would be if the treatment was complete (unlikely I think based on what was said on Monday) or it was considered to have failed.  I think I knew deep down that it could fail but I’d not really thought about it and considered that.

Yesterday I didn’t need as much help, just my Dad to come in and help me get dressed as I got one leg in my knickers and couldn’t maneuver the other… which was fine as the possibility was planned for and I got up and got washed so I’d be getting dressed at a time he could be around.

It might be early but I’m kinda sleepy – I have some cast protectors but just in case they didn’t work I didn’t try them until this morning.  Mum came and helped me shower but in order to be at work in time had to come at 6.30am.