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.

In Which I Am Apprehensive About An Upcoming Appointment

I'm back at the hospital tomorrow. Only I don't really know what for.  I rang them on Monday about various things and the receptionist referred to my appt as being at X time with the physio.  But I was under the impression that my appt was 15 minutes later than that and in the clinic with a consultant (although I believe this clinic has physios and consultants working together, I was under the impression I was going as they need me to see the consultant).

At the end of the day none of it really matter but... I was already a bit apprehensive about the appointment due to some of the stuff that's going to be discussed (which could mean big changes for me which are never easy) and now I have what ifs going round and round in my head.  I'm told by they physio the new meds they might want to give me are sedating. Reading on the Scope website suggests one of the possible treatments is painful to administer - and I don't know for definite but based on stuff that was said I think they might want to do it then and there if they think I'm a candidate.  And something that was discussed when I saw the physio is a treatment I swore I'd never have but am now thinking I'll try if they suggest it.

And then there's the fact that the transport people despite having picked me up two weeks ago from here had a question about where I should be picked up from. Here.  Or my parents old house which I moved out of 10, nearly 11 years ago, they moved out of 7 or 8 years ago and at which I never had hospital transport.  And which isn't my most recent previous address by a long shot.  And how did they get the answer to that question? By ringing my parents and speaking to my Dad.  So much for confidentiality.

So basically I've just turned into a big ball of stress and it's not fun.  Nor is depression which makes these things so much worse.

I do know it'll all turn out all right in the end but... I wish I could skip to the end like fast forwarding through a DVD!

Monday Music - Born This Way

I first started thinking about using this song for a Monday Music last week after the comments made by Philip Davies in the House of Commons (he said that disabled people should work for less than minimum wage as they are less productive.)  People were tweeting how they were not worthless and it came to mind.  But in the end I tweeted a link to a video of Bruno Mars, Just The Way You Are.

Then it turned into a bit of a week when people make stupid comments about my disability.

First, earlier in the week someone was saying where the disabled loo was at the event and another person went "where's the normal one?" to be honest I found that kinda funny but she was totally and utterly mortified when she realised what she'd said and apologised repeatedly.  I'm sure she was much more bothered than I was.

Then on Saturday I asked someone "so... how are you?"  The gestured at my wheelchair and then went "well... better than you."  I said "I'm fine." and she said "I know you are"  That did make me want to roll my eyes but it's someone I know well who hasn't been at all well, who didn't look good and said it in such a stiff upper lip "mustn't grumble" type way that I understood and let it go.

A bit later I was out for a bit of a wheel and an acquaintance stopped me to ask if I wanted a push.  I said no and we chatted a bit.  We've known each other a few years but only on and off and really don't know each other that well.  Our conversation went a bit like this:

"How long have you been disabled?"

"From birth.  I've got CP the same as [a CPer we both know]"

"oh how tragic."

"What?!"

"Well you were whole and then there was an accident with your birth and now you're disabled"

"I'm whole now.  And anyway a lack of oxygen at birth was never gonna turn out well.  Better disabled than dead."

She got called away at that point which was probably a good thing.  I was very annoyed by that conversation.  Being disabled doesn't make me less of a person.  But I didn't lose it with her because I didn't feel I could and also I was shocked by the way the conversation had gone.  Now I've had time to think about it? Not happy at all.

I'm a sailor, a writer, a volunteer CAB adviser, a knitter, a friend, a daughter, a sister.  I'm messy, I'm opinionated, disorganised and loud.  I dye my hair crazy colours, spend too much time on twitter, read crappy fanfics and go to bed much too late.  I lose track of time reading too many books, like Doctor Who and want to start watching Grey's Anatomy again.  I eat too much chocolate and drink too much coke.  I'm learning to crochet and have piles of unused scrapbooking materials.  And yes I have both depression and CP.  And I use a wheelchair.  But none of those make me any less of a person who spends all their time on their own two feet.  The most important thing?  I'm me.  I'm Emma.

So for this week's Monday Music I'm sharing Born This Way.  Originally by Lady Gaga, this is the Glee version.  Mostly because the Lady Gaga video is really annoying (the song doesn't start for several minutes into the video) but also because, basically it's Glee.  I love the tops they wear too.

It doesn't matter if you love him, or capital H-I-M 

Just put your paws up 

'Cause you were born this way, baby 

My mama told me when I was young 

We are all born superstars 

She rolled my hair and put my lipstick on 

In the glass of her boudoir 

"There's nothin' wrong with lovin' who you are" 

She said, "'Cause He made you perfect, babe" 

"So hold your head up, girl and you you'll go far, 

Listen to me when I say" 

I'm beautiful in my way, 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way 

(Born this way) 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

Don't be a drag, just be a queen 

Don't be a drag, just be a queen 

Don't be a drag, just be a queen 

Don't be! 

Give yourself prudence and love your friends 

Subway kid, rejoice the truth 

In the religion of the insecure 

I must be myself, respect my youth 

A different lover is not a sin 

Believe capital H-I-M (hey, hey, hey) 

I love my life, I love this record and 

Mi amore vole fe yah 

I'm beautiful in my way, 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

Don't be drag, just be a queen 

Whether you're broke or evergreen 

You're black, white, beige, chola descent 

You're lebanese, you're orient 

Whether life's disabilities 

Left you outcast, bullied or teased 

Rejoice and love yourself today 

'Cause baby, you were born this way 

No matter gay, straight or bi 

lesbian, transgendered life 

I'm on the right track, baby 

I was born to survive 

No matter black, white or beige 

chola or orient made 

I'm on the right track, baby 

I was born to be brave 

I'm beautiful in my way 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way, yeah! 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

I was born this way, hey! 

I was born this wayy, hey! 

I'm on the right track, baby 

I was born this way, hey! 

I was born this way, hey! 

I was born this way, hey! 

I'm on the right track, baby 

I was born this way, hey!

Milestones - The 75TH Disability Blog Carnival!

Welcome to the 75th Disability Blog Carnival!  I chose the theme Milestones based solely on the fact that 75 seems to be a huge number! I have to say I didn't realise when I chose the theme that the day of the carnival would be a bit of a milestone day for me.  And yet the sort of milestone that only another crip can truly understand the meaning of.

My powerchair broke down almost four weeks ago.  It's been a long and complicated road to getting it working again.  And it's been really hard.  Today it returned home, cleaned, with new tires and with the fault fixed.  I've been treating it to a nice long charge before taking it out but tomorrow is the day!

I'm not the only one who has been sharing their milestones and their thoughts.

Gemma has written about a milestone in her journey with mental distress.  Her bravery and her honesty in Finding Ways To Cope show just how strong she is (contains potentially triggering material)

One of the things I like to do when I host the carnival is to include some new or new to the carnival bloggers.  I love discovering new blogs and I was especially pleased when Hannah started her blog because she's an old school friend of mine.  In her post for International Wheelchair Day she wrote about getting a wheelchair and the freedom it gave her - a pretty big milestone in life

Andrew is also new to the carnival.  Milestones is his first submission and is about his journey since losing most of his vision

Allison is turning 21 this month which I hear is a big milestone in the US as it's the legal age to drink (it's 18 here).  She wrote about how she plans to celebrate and how she and her family have made sure she hasn't missed out on other milestones even when her blindness made the traditional way impossible.  Celebrating Milestones With My Dad is well worth a read and I'd like to take this opportunity to wish Allison a very Happy Birthday!

As I have CP, I've always been disabled and so have no before and after memories or a day when my life changed.  Funky Mango (welcome back to blogging!) was diagnosed with MS on 17th March 2005.  In Happy Birthday to my MS she explains why it's a day she celebrates every year

For Todd the last Christmas Day represented a difficult personal milestone showing the difficulties disability can bring and how not all milestone moments are good ones and it's not always possible to be happy on days like Christmas.

Carl has been thinking about various different Milestones in his life - and how some people make more of them than he thinks necessary.  The old "oh look, a CRIPPLE!" type thing.  His post is thought provoking and very interesting (and not just because he described my blog as great).

Sue Marsh is an avid campaigner and blogs at Diary of a Benefit Scrounger.  She recently did a week of posts on ESA (Employment and Support Allowance) which is the newish benefit to replace Incapacity Benefit and is paid to people too sick or disabled to go to work.  I won't go into details as they are all on Sue's blog but suffice to say ESA has been badly planned and badly executed and a lot of disabled people are scared. Where's The Benefit frequently receives comments from people considering suicide if they don't get ESA and there are many similar stories on The Broken of Britain and One Month Before Heartbreak.  Recently it was announced that a public inquiry is to be held into ESA - a huge milestone considering how many people have been campaigning for change.  In ESA Week Ends in Success! Sue explains the details of how to submit to the inquiry.  She is also offering to help anyone who for whatever reason can't put their submission in the required format.  I'd like to encourage all UK residents who read this  to strongly consider doing so.

Elizabeth McClung recently read Wish by Joseph Monninger and in made her think.  She reviewed it and shared how it relates to her own experiences.  People don't always let you do what you want and experience what you want when you have an illness or disability as both the book and Elizabeth's own experiences showcase.  An example of the milestone twisted by the well meaning but thoughtless person on the sidelines.  It sounds like a great book as well, I really want to read it now!

Milestones: Seeing Change Blossom Before Your Eyes is posted on Life of the Differently Abled.  It's about having CP and being a blogger and it's perfect for any Disability Blog Carnival but especially for this one.

Apparently, today is Cerebral Palsy Awareness Day (I didn't know) which I'm sure you'll agree is kind of important and what are milestones if not important?  Spaz Girl has written What I Want You to be Aware of on CP Awareness Day

Cynical Beauty is getting married this year which is pretty much one of the biggest milestones ever.  Her blog, Disability and I Do is about the planning and the thoughts behind it.  I particularly liked her post Should You Hide Your Scars On Your Wedding Day?  And if we're talking about weddings I should mention that another crip getting married this year and blogging about it (amongst other things) is Mary.

That's it for this carnival I think!  As always let me know if any links are wrong or otherwise don't work.  I believe the next carnival is being hosted by Cheryl but I don't know the details.

My submission to the consultation on DLA reform

I am lifelong disabled. Always have been and always will be.  Specifically I have cerebral palsy (CP) and use a wheelchair 95% of the time.  I’m able to stand and take a couple of steps, enough solely to move between bed, wheelchair, toilet, powerchair etc.  I also have clinical depression and anxiety.  This was not caused by my physical disability but is made much worse by it.  I was diagnosed with this in 2003 and have been on treatment for it almost continually since then.  I have many concerns about DLA reform.

As someone who is lifelong disabled I’ve been in receipt of DLA at the rate of Middle rate care and Higher rate mobility since DLA came into being.  There is no cure for my CP which means I’ll never improve to a state where lower levels or no DLA is needed by myself.  CP being a static condition also means that there is little chance of my condition becoming such I require higher levels of DLA.  As such I have an indefinite award.  That doesn’t mean it’s a permanent award, it just means that they recognise my circumstances are such they need not be reviewed regularly.

I am concerned the greater impact of these proposed changes hasn’t been assessed correctly.  I live in Oxfordshire and in 2007 my support from Social Services was withdrawn as I wasn’t considered to have high enough needs.  Since then the criteria have become even stricter.  My DLA has enabled me to continue living alone.  It means that I can pay for a cleaner to come once a fortnight and mop my floors, change my bed and clean the kitchen/bathroom.  The rest of the time I live in a very messy house I have no choice.  It pays for extra washing because I’m incontinent and also because sometimes my clothes catch on my wheelchair and get dirty quickly (and sometimes for extra clothes because they rip).  It pays for new batteries for my powerchair as I have no other form of out the house independent mobility but don’t qualify for one of the NHS.  For heating as I get cold easily.  Slightly more expensive foods that come in packets I can open without help and things which are low effort to prepare.  If I was to lose my DLA I would have to go back to social services and they would need to find that help for me, something which would likely cost more than the DLA I receive each week.

My family (parents and younger brother and sister) all work full time.  They’d have to find a way to help me out much more than they already do.  I’m not being melodramatic when I say they would likely end up having to do all of the support that DLA allows me to arrange for myself.  Doing that on top of full time work would be very difficult.  My mother runs her own business which would likely suffer if we found ourselves in that situation.  Surely that isn’t good for the economy? 

Then there would be the increased cost to the NHS.  My family wouldn’t want me to feel guilty or like a burden but it’s how I would feel.  I’m 29 and I’m independent, but I’m really scared I’ll lose that.  That’s making my mental health problems worse – I had a panic attack yesterday about the possibility.  If the situation becomes a reality it’s very possible my medications will need to be increased at a higher cost to the NHS.  I’d also no longer be able to afford repairs and maintenance on my powerchair so would have to go back to the NHS for reassessment there.  Parent and other family carers also have a high level of health problems due to their caring responsibilities, again another possibly increasing and likely high cost to the NHS.

Currently I live in a fully adapted flat which I rent from a housing association.  It was designed for a wheelchair user as it was built.  Without my benefits and the support they provide I could face having to give up my flat and move back with my parents.  I’ve never lived in the house they currently live in and it’s not suitable for my needs.  A disabled facilities grant or similar would be needed to adapt it, another cost which DLA helps avoid in my case and I’m sure in many others.

Emma Crees

17^th February 2011

You know you've got CP when...

Looking at a packet of medication and realising that you are potentially two tablets away from finishing a long term course of medication is very exciting.

Otherwise known as Emma's CP: It's not all about the wheelchair.

I've been taking Terbinafine since September and I have an appt with my GP tomorrow morning to discuss whether it's too soon to take me off it or not.  All week I've been counting down and suddenly today I'm like "hmmm maybe she won't take me off it yet."

 Basically due to a combination of Onychomycosis (fungal infection) and CP I pretty much had no toenails in September.  I hadn't had proper ones for years. I can't cut them myself and no one could cut them for me due to the infection.  I kept catching them and ripping them off by accident meaning they got infected.  One of my parents would have to come round and help me clean them properly and apply plasters and antiseptic etc.  Sometimes blood would drip all over the floor when I wheeled to grab a towel or something and then to my bed so I could transfer and do the best to wrap it up until someone got her to do it properly.  That would need to be cleaned up by whoever came.

I couldn't use the normal topical treatments because they require daily application and I couldn't reach to do it myself.  I'd spoken to my GP a while ago and she gave me something which cleared it up but only the skin around my nails, not my nails.  It wasn't the optimal treatment because of my CP. It was a spray (which actually said on there it wasn't for nails but she said it was worth a shot).

In August I went back, this time to a locum.  This was at least a year later and my feet had gotten worse in the meantime.  He took one look at my feet and declared all of my toenails to be completely destroyed.  He took a sample (with great difficulty) and sent it off for testing.  Apparently it was an extreme case but he needed the tests to prove that.  I was given oral terbinafine and I've been taking it daily since September.

Terbinafine is a really strong drug and can cause liver problems.  It's not been tested for really long term use I believe.  I've been worried about taking it and would have preferred one of the lesser treatments but because of my CP it just couldn't be done.  I have had liver function tests done part way through the course and they're fine.

And now I'm hopefully coming off of it tomorrow. If not now then in another month or two I'm sure.  But most of all. I have toenails again.  They aren't right but they are a lot healthier than they were.  And I've only ripped them off two or three times since September.  Considering I was doing that probably once a fortnight and occasionally once a week that's huge.

Guess Who's Back?

Back again.

Baclofen's back.

Tell a friend.

Yup, I saw my GP yesterday and picked myself up a lovely(!) prescription for some baclofen.  And I started it today (delayed from yesterday so I could have a few vodka's at the beer festival I went to last night).

Long story short (just wrote a load more and deleted it for various reasons), it's not what I wanted to do and I'm a bit sad about it.  But it's totally the right decision and I'm going to take it.  Even if it is pain in the ass raspberry flavour solution three times a day for the first several weeks.  And if only because it is the less of two (supposed) evils.

You Know You Have CP when...

... the four things you are most excited about are (in order of when they are happening):

• Going to see Kate Adie give a talk about her experiences tomorrow night


• Going out to eat to celebrate Sophie's graduation/degree results next week


• The My Sister's Keeper film coming out at the end of the week.


• A hospital appointment in two weeks.

And you even more know you have CP when you realise that if you had put them in order of how excited you are, the hospital appointment would be first or second (it was first but I'm really looking forward to tomorrow night so the closeness of that has temporarily pushed it down to second place).

Oh and the appointment?

Brace yourselves.

It's for the wheelchair clinic.

And we all know what that means...

The tale of the maxi and the manual

I don't think I blogged about this before so here goes (if I did I don't remember doing so but sleep is an issue at the moment so...)

A couple of weeks ago my sister had a party to celebrate her 21st (which was a couple of weeks before that).  It was  really fun - I did blog about that bit already - and I found a fantastic maxi skirt to wear.  I do believe it is my first ever maxi skirt (or at least I don't remember one...)

Long skirts and wheelchairs can be a bit of a problem but as I love my long skirts (ankle length) I've got it all figured out and rarely have issues.  Maxi skirts and manual wheelchairs - even more of a problem.  Add a drunk cripple into the mix and you end the evening wondering just how on earth you 1) didn't fall out of the chair and 2) didn't end up ripping the damn thing.

 It kind of falls so it covers the side of my chair and does catch in the wheels a bit (the casters at least) if I'm not careful.  

I've been wearing it the last two days and had no problems whatsoever yesterday.  Today I've felt it begin to catch maybe three times and pulled it out and out of the way before any issues.  I'm not sure I'd want to go trailing around in my manual out of the house whilst wearing it but I've been out and about in the jazzy in it and had no problems whatsoever.  But that has arm rests and is higher off the ground too which helps (my quickie has no armrests and I took the clothesguards off in November because they got bent when someone lifted it into a car using them).  Although it's general height from the ground thing does drive me crazy when I drop things as I did several times at knitting today and again in the bar after creative writing (when I was drinking coke so no comments please about drunkenness).

But at Soph's party I got it well and truly jammed into my caster and reached the in the middle of the dance floor can't move stage.  My friend had to untangle me and I was kind of surprised she managed it as quickly as she did let alone the fact she did so without any accidental or deliberate damage occurring.  Because I don't get things caught in my wheels that often but when I do I frequently end up cutting them out either because a) I can't get it out b) it's yarn and the bit thats caught will be unusable even if unravelled (thats the most common thing) or c) I try and it takes so long I get bored or frustrated and reach for the scissors.

So obviously I will have another clothing related thing to be aware of when shopping which *sigh* is a bit hard (depression isn't doing so good right now for various reasons).  Another one of those things where you'd think my CP wouldn't have an affect but actually it does.

But it really is a very lovely skirt and when it comes down it that's all that matters.

Slightly Sick But Lucky

I've been feeling off all weekend and last night was absolutely convinced I had a UTI (I used to be the queen of them).  My bladder and that area was that painful.  But thankfully a trip to the nurse this morning reveals that whilst I am symptomatic nothing is showing up.  And my temp is fine so there shouldn't be something else making me feel like this.  So I've antibiotics to start taking if I still have pain this evening or tomorrow morning.  The nurse (nurse led minor illnesses clinic) checked with the doctor and basically with my history and those symptoms...

I still feel off but I feel a lot better knowing that I pretty much don't have an infection - after six in seven months in 2003/2004 which were only cured by four months of 50mg daily nitrofurantoin -  getting those symptoms to that extent makes me anxious.  Lots and lots of fluids and some cranberry extract for me today it seems.

It's a wheelchair thing and it's not good.  But I heard some stuff yesterday that reminded me that even as a CP-er I am very lucky and if being prone to UTI is to be my non wheelchair major CP issue then so be it.  A lot of people have it worse than me.

Still, the weekend was fun other than that (but that's a whole 'nother entry...)

CP had me

I always say that I do so much and everything because I don't know how to do or be any different.  I was brought up no different to my brother and sister and was brought up not to let the fact I have CP and use a wheelchair stop me.

It's an attitude I'm grateful for and I couldn't imagine being any other way.  I have CP.  I've always had it.  And I always will have it.  If I want to live my life and do things and achieve goals and make the most of whatever time I have then CP just is - it has to be.  I was talking to someone a few weeks ago (might have been a month or so, actually come to think of it) about the fact that I believe that having CP is what is right for me and that I have it because I have a soul which is strong enough to cope with it and for it not to matter to  me.  He, quite rightly, replied that it does matter.  And it does, of course it does.  I then clarified that to saying that CP matters but only in a good way.  It's the whole "defines but does not confine" thing.

I also believe very strongly in the social model.  It's a very useful thing which works on the principle that it is society and it's set up - attitudes, access or lack of it, cultural norms - which disable me not the CP or the wheelchair.  Things that stop me or cause me issues/difficulties are not because of me or CP - they are not MY PROBLEM.  I have at times referred to bad things which cause me problems as "society hates disability"

Anyways, the downside of this is there is always, ALWAYS going to be odd time when it actually is CP which stops me.  I couldn't take part in the regatta as fully as I wanted too yesterday and today.  And that, plain and simple, was CP taking a pot shot at me.  And nothing but CP.

Sucks.  Muchly.

I was a bit tearful about that at the time because I DON'T let CP stop me.  And I felt like I let down those who gave up their time and put so much effort into getting me there.

The fact of the matter is none of them are bothered about it and they all told me I did do well.  But, I'm Emma, I have CP it doesn't have me.  But today, it hurt both physically, mentally and emotionally.

There may be a few things we can do to make things easier for me - a couple of us had a quick brainstorm at lunch.  In theory they should work if we can work out the specifics.  In practice, however, I don't think it can be fully solved which may mean I don't do a lot of regattas.  We shall see.

And in the meantime?  I remind myself that "A loser is someone who when knocked down, stays down" (unknown) and go onwards and upwards - on to the next thing.

Oh and I just googled that quote to see who said it - all four of the results are this blog, in particular (specifically) this entry here (love that quote)

I've Still Got It

My brother and his girlfriend move in together yesterday.  And today they had a housewarming BBQ.

The house they've moved into is an actual house - with an upstairs and a downstairs.  We'd thought the upstairs would be "out of bounds to me" - I used to climb stairs on a regular basis as up until I went to uni I had an upstairs bedroom.  And even then until 2002 I would be climbing stairs to get to my bedroom during the uni holidays.

Then in November 2002 my parents moved into their current house - which is a chalet bungalow.  And I got a downstairs room.  I first saw the house that Christmas and I went upstairs twice to see it.  I've not been up their again (and my sister actually thought I'd not seen the upstairs at all).  Other than one incident not long after I left uni (four years ago) involving a broken lift and me getting myself down some stairs, stairs have been something other people did since 2002.  I've done the odd step (there are two into my parents house).  But stairs?  I don't do stairs.

Or I didn't until today.

I wanted to see the upstairs of my brothers house.  I'll admit I wasn't sure I still had the ability to climb them it being so long since I did.  Mum didn't think I could and didn't want me to try.  Telling me that is kinda like a red flag to a bull and before I got there I had wondered if it might be possible.  So that was it.

But I was in the kitchen with my brother and we just went and starting going up the stairs.  On one side there is a bannister, on the other a bannister part of the way and then a wall.   I had wondered about going up on my bum - but I walked!  I held on with one hand and held on/lent on the wall with my other.  Ben walked behind me.

I practically flew up those stairs.

Just me and the walls/banister no help.

I couldn't believe how quickly I got up them or how easy I found it.

Had a brief look round the upstairs and then sat on their bed for a while catching my breath while they greeted more guests and showed them round.  Then Dad came up and helped me into the bathroom which I also managed without help (and we hadn't been sure I would even with help).  Yay for small bathrooms which mean the loo is right by the wall and the bath is right the other side and on the side i need help on the most.

Dad helped me walk back to the top of the stairs and after going down the top two, I sat on the top stair and worked my way down on my bum.  My favourite floaty blue skirt might not have been the best choice for stuff to wear for that.

I was breathless after my adventure but very pleased.

Welcome back, stairs.  I can't say I've missed you over the last six years.  And I don't think we'll be having the relationship we had before.  Because I have no regular need of you now.  Just a now and again when I visit my brother and need the loo will have to be sufficient for you.  But it is nice to know that I've still got it.

Oh and the house is very nice and the BBQ was fun.

this too shall pass

These last few days have really left me with a feeling like I want to throw a right strop, scream out "I'm sorry that me and my attitude and the way I think, feel and act about things are annoying you.  And I'm really sorry that me and my disability are causing you problems.  I'll just take myself and my CP and go away somewhere where we are liked!!" and then stomp off to a corner somewhere.  Possibly something about "And you think you've got problems" should also be thrown in if I were being a true stroppy cripple because I don't actually think I did cause any real problems.

Only I don't think the people I want to scream it at would get that I was being sarcastic.  And lord only knows how much I would hate for them to think I was actually apologising to them for the fact that things weren't great for me access wise and their attitudes really didn't help me either.  Because it's not my problem and I wasn't the one at fault.

But it is really tough.

still, as they say - this too shall pass.

CP blog roll

I've been thinking for a while that it might be useful to compile a list of CP bloggers.  Well, actually I've been thinking a list of disability resources would be the useful thing but a list of CP bloggers would be a good place to start.  I know quite a few bloggers with CP or parents who blog about their CPer kids.  And I can add those to the list obviously (when I start writing it).  But if you have CP and blog or you blog about CP please can you leave a comment here with your blog address.  Maybe a bit about you too if you want.

And yes, before anyone asks, I did just read the CFer blog roll call over on Nate's blog.  But I swear I had this idea ages ago, just reading all the comments and bits of peoples stories about their lives with Cystic Fibrosis was really interesting. and made me go "do it now"*  I have always had a bit of an interest in CF though - I had two friends with it.

*that and my blog was crying out for an update!

Fallin'

I had a pretty spectacular fall about an hour ago. Definitely the only full on fall I've had this year I've lost my balance transfering and ended up not quite sat properly a few times and I've also ended up standing then losing my balance and ending up back in my chair without meaning too a few times. Those count but don't count because I have caught myself on furniture or door frames or whatever.

Today I well and truly lost my balance and went. I'm not really hurt but I'm sore and I'm pretty sure I'm gonna be black.

It's probably not the worst fall I've ever had; I've had worse thats for sure. But I managed to pull my Dad over with me (I was walking holding his arm) and I ended up half on the step, half off, on my back with my Dad on top of me. He caught himself though so he didn't actually land on me. So it's pretty scary.

And there's lots of emotional and mental things that go along with it that have to do with the fact I scared my Dad by falling and he yelled "oh bloody hell" a few times as I was going and scared me and I thought he was mad with me and I was just crying and saying I couldn't help it. And it's all stupid and basically fine but it's tough because as much as he stood there and kept saying that he wasn't yelling at me I couldn't handle that conversation then and it made me cry more. It doesn't help that I've pushed myself a lot mentally and emotionally this week and although I'm slowly clawing it back today, I am a little low on mental spoons and maybe fragile.

I know I scared him and he scared me and there was no blame or whatever. And he wasn't yelling at me. I know that. Rationally. But right now I need to regain my equilibrium. Hopefully when I see him tomorrow we can chalk it up to the "straw that broke the camels back."

I haven't actually looked to see if I am bruised (based on what I did and how I feel I fear I must be) and physically I'm pretty much fine. But I'm shaky and tired and...

Falls suck.

ETA: you know how I said I assumed I was bruised and how I landed half on the step, half off?  I got one really narrow line of a bruise going alll the way across my bum right where I hit the edge of the step sort of like i'd been lashed... i'm really stylin'!

And with more time to consider things, it all just comes back down to how people react.  If people are calm and all when I go flying like that I can stay calm but if they make a fuss I tend to freak... sort of like a child.  Of course, pain in this case probably would have meant tears regardless BUT it's an interesting point.

Letters Unsent

Dear Starbucks,

If you must have stupid banner things outside your shops then you must (but only if you really, really must). I suppose that was kinda ok. But for the love of god either leave them to wave around properly in the wind or weigh them down properly. You know, doing it so that the god damn weight doesn't get caught by the wind. In fact, do it so there is no chance in hell of that happening would be your best bet.

Because when those banner things get caught by the wind and then sent by the wind in your wheels and the weighted part hits you in the thigh? That hurts like a bitch. And continues to do so for eight (and counting) hours afterwards.  Gives a lovely black look to the thigh too.  Sexy, that.

It's not exactly rocket science people!!

No love,

Me

Dear CP,

I know that it times of stress, cold, or pain you like to spasm. And that you like to do so when it comes to things that surprise me and make me jump too. Most of the time, I understand that, we're cool.

But if I ever have a freak accident with a starbucks banner again (or, indeed, any banner). Give me a break from the whole spasm/clonus/extension thing, please? Making my arm spasm onto my joystick just made things worse.

I understand your need to make me spasm, I really do. But come on, CP, there's a time and a place for these things. And that just really wasn't it

lil bit of love,

Me

Incurable

I made an off hand comment to a group of other volunteers in the bureau this morning.  It bombed.  The conversation started after someone said they hadn't mentioned a specific thing to their doctor but assumed they would have picked up on it.  I can't remember the exact comment but it was along the lines that doctors aren't the be all and end all of everything medical and that their knowledge can be lacking. I am feeling particularly anti the medical establishment at the moment and may have used the term "useless" in there somewhere.   Everyone else disagreed with me

CP is something of a case in point when it comes to that statement.  CP is a chronic condition which is defined as "not unchanging" which basically means that it's not degenerative and it won't get worse but that the aging process may affect a CP-er sooner and greater than your average TAB person.  It's incurable although treatments are improving.  CP-ers have a good prognosis as described in this article (which is from wikipedia)

Note the following:

in most cases persons with CP can expect to have a normal life expectancy 

I know three or so people who have CP and a whole host of other medical issues; some of which are pretty serious.  I am not including myself and my depression dx in this example.  None of their issues are related to or influenced by the presence of CP.

One of those people recently had a long hospital stay and spent some time on a ventilator.  When we spoke recently they were extremely upset.

Why?

Because after living with CP for 28 or so years, some doctor at the hospital told her that CP gets worse and worse, is degenerative and people die of it.  They told her it was the same as Muscular Dystrophy.   They specifically said that "it's what CP does."
She wanted to know if I ever knew that.

That doctor is very very lucky that I just heard about that in an MSN conversation.  And I really hope I was able to convince her that it wasn't true and the doctor didn't know what they were talking about.

Having an incurable condition is not the end of the world.

Having an incurable condition does not automatically indicate that the person will get worse and deteriorate.

Incurable does not equal terminal.

But I could cheerfully "terminate" the medical staff who were ill informed and  had no people skills and told my friend that.