>In which CP makes things complicated

>Sometimes being disabled is soooo complicated.

Yesterday, I saw my GP.

When I was waiting to go in something made me jump – and then spasm (my CP means I jump really easily and jumping usually triggers spasms of some form).  This woman sitting opposite me went “oooh that made you jump” which was apparently the funniest thing ever because she burst out laughing as she said it.  Pretty upsetting.

My GP asked how I was when I went in and I said “OK” but I was feeling down because of that. Luckily she knows me and went “what does that mean?” So I told her, generally I’m good but this has just happened.  We had a bit of a chat about that and she said supportive things.  One of the things we said was that people might find it funny but it’s my life and that’s not funny from that point of view.

Then she started asking about my antidepressants and my muscle relaxants and I was all “hang on this isn’t what I’ve come for!!” Which she said she knew but she wanted to talk about it while I was there.  I think the decision has been made that I will remain on antidepressants permanently.  It was something she brought up and as I said to her I was diagnosed practically 8 years ago and have spent most of the time since on antidepressants and maybe that’s just the way it’s going to have to be from now on.  Her comparison was that people who have high blood pressure take medication almost all the time and it’s just the same.  That didn’t bother me as much as similar comparisons have before (although if anyone ever does the physio for CP is like being a ballet dancer comparison again I may have to scream at them).  I do think my depression is a lot more stable than it’s been for a long time which is good.

On the subject of Baclofen I said that my spasticity is really bad at the moment. Which got a “so I can see, best make a note of that!!” type reaction.  My left leg was locked out with no bend in it at all.  I think she was very surprised at how bad it was.  That’s when things got interesting

She looked at my feet and said they look great but I should probably have another two months of Terbinafine to really knock the infection of the head.  But did I think the Terbinafine was affecting my spasticity? Which really confused me for a moment as for some reason I thought she was suggesting it might be improving it. Which she wasn’t.  But what she was actually suggesting was that the combination of the 3 (Baclofen, Fluoxetine and Terbinafine) was doing something to the levels in my blood.  “oh yes” says I “I was told it might increase the level of Fluoxetine in my blood.”

Lightbulb moment.

I’ve been totally convinced for the past 18 months that Fluoxetine makes my spasticity worse.  My GP thinks I might be right. (I changed antidpressants to Fluoxetine in Sept 2004, starting having hip problems caused by spasticity Dec 04 and went on Baclofen Feb 05.  Came off Fluoxetine March (?) 08 and my spasticity dropped so I came off Baclofen too. Went back on Fluoxetine March 09, back on Baclofen due to bad spastiticy July 09).

If the Terbinafine IS increasing the amount of it in my blood (as seems likely) then it must be playing a part in my spasticity levels being through the roof, either the drug itself of the increased fluoxetine levels it’s causing.

So the question of if I wanted to stay on Terbinafine was raised. I said yes, because I want this fungal infection to properly clear up and if she thought I’d benefit from more then I want to take it.  I’ve been wondering if that was the right decision ever since!

As to my spasticity, we can’t change my antidepressant easily.  I get too down and fluoxetine works so well for me that my Dr thinks it’s a bad idea.  Most other antidepressants work on the same hormones etc so would likely have the same affect. I did suggest a lower dose (as I’d been wondering how I’d do on that for a while before this visit) but apparently 20mg is the smallest they do so that’s out.  I also mentioned the antidepressant I took before, Lofepramine, which she said does work differently.

But the plan at the moment is for me to wait it out, see if it improves when the Terbinafine ends and keep tweaking my Baclofen dose based on my symptoms as I’ve been doing for years.  She asked how much I’m taking (30mg a day) and I was a little surprised she didn’t alter my criteria (between 20 – 40mg) but as I said to her I’m not convinced it’s working and what seems to keep happening is I’m fine on one amount, have to up it, am fine on that for a while then need to up it again.

That left me with a lot to think about and also the feeling “of why didn’t I figure out this was a med reaction myself?!”  Because she’s the Dr and I’m not, obviously.  But for some stupid reason I did feel like I should have.

CP also made today more complicated but I’ll skip most of the details and just share the bit I found funny.

I was asked to go to London to talk to someone about being disabled and travelling by train.  I arranged to meet them at Paddington.  And they were crap at assistance frankly.  That’s about par for the course with London train stations.  But what really made me laugh was this (but only cause it worked out).

They have a disabled loo in the reception.  And that’s also where you go to tell them you’re there for assisted travel.  So I went in and said “hi I’ve assistance booked to go to [place]” and the woman said “oh yes is it Miss Crees?”  and I said that yes I was and I was just gonna pop to the loo.

Next thing I know she’s on the phone and I hear her say “Hi [name] it’s London Paddington assisted travel we’ve got Miss Crees here for assistance, just wanted to confirm she was coming and check you were expecting her?” and I recognised the name but not from my station.  There was a pause “oh you’re not expecting her?”  Longer pause “oh yes, actually you’re right she is travelling to [place] and not Oxford”  She then rang where I was going.

I came out of the loo quietly amused.  The only thing she said?  “I’ve told [place] you’re coming”

But it’s a really good job she messed up and not only told a station I go to but a member of staff who recognised my name and knows where I live otherwise they’d have assumed she was right (travel bookings only go to the stations involved) and things would have gone wrong.

>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.

>Some Writing Links

>As my mum commented in an e-mail yesterday I seem to be everywhere at the moment.  A slight exaggeration but I have had some success and exposure lately.

I was asked to write for Community Care’s Service User Blog about One Month Before Heartbreak as a promotional thing.  One Month Before Heartbreak: You Can Speak Up For Disabled People Too

The Guardian have been great with supporting One Month Before Heartbreak and they’ve mentioned us several times.  This Society Daily article pulled out several OMBH contribution to highlight including one of mine (my This is Disability image)

I’m now a contributor for Where’s The Benefit?  The first piece I wrote for them is about the case of Riven and Celyn Vincent.

The even more exciting thing about that article I did for WtB is that it was picked up by Society Guardian on Friday with a big chunk of it quoted!

I think there are a couple of other opportunities “in the pipeline” if you will but those aren’t definite.  I’ve certainly had a successful ten days or so!

>Several One Month Before Heartbreak Related LInks and News

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(I’ve just posted the majority of this on the One Month Before Heartbreak blog but there is some extra more me related stuff at the bottom here)

Today has been amazing for support for One Month Before Heartbreak.

Sue Marsh (Diary of a Benefit Scrounger) wrote a piece for The Guardian which appeared in Comment is Free.  We’ve been mentioned by The Guardian several times but getting a piece in Comment is Free is huge.  Amplify the eloquent voices of the disabled protesters is Sue’s piece and it’s really good.  It contains many links to specific posts on the One Month Before Heartbreak blog.  Also that article has received well over a hundred comments and although I’ve not read them all there has been some good discussion and support there.
Kaliya Franklin (known by most people as Bendy Girl from Benefit Scounging Scum) was just on Talk Radio Europe talking about One Month Before Heartbreak, The Broken of Britain and the DLA cuts.  I listened to that interview and she did a very good job of getting our points and concerns across.  Talk Radio Europe have promised us their ongoing support for which we thank them!
The petition to end DLA reform continues to gain signatures..
Most importantly, the National Assembley for Wales has stepped up to oppose DLA reform

Oh, and the new Broken of Britain logo and twibbon were revealed

There are a couple of other “in the pipeline” things which maybe happening but it can definitely be said that it’s been a good day for The Broken of Britain / One Month Before Heartbreak teams.

I’ve not personally updated about me myself and I for some time.  I’m doing well!  My attempts at weight loss are well and truly stalled and in fact my weight is up a lot which isn’t good.  And I’ve not been fitting in any exercise.  Both are things I hope to get back to next week.

I’m very tired as a result of running on adrenaline for most of the weekend.  I’ve also been very anxious today and spent part of the day feeling nauseous.  I think that might be coming down from the adrenaline of doing so much over the weekend.    The rest of this week and next week I’ll be taking it as easy as possible for the simple reason that I have to.  The sheer number of silly mistakes (e-mailing a woman and calling her Jim because I misread her name as that?? She thought it funny but so embarrassing for me) I’ve made and the level of spasticity in my legs makes that very clear.  And that’s with trying to do what I could for this from my bed!

I’ve completely lost my train of thought.  Too tired to continue.  More tomorrow!

>A Few One Month Before Heartbreak Links

>I am very tired and need to go rest (waiting for my dinner to finish cooking and my mum to pop round or I’d already be in bed with a book or in a heap in front of the TV).  But I just wanted to highlight how amazing One Month Before Heartbreak has been.  I’m completely and utterly blown away by what we’ve done and the support we’ve had.  If you google “One Month Before Heartbreak” you get more than 13 thousand results.  13 THOUSAND.  that’s seriously mind boggling.

I’ve not had time to share very many links or to do more than skim the posts that I’ve been scheduling to the blog.  I know that Bendy Girl is also exhausted but pleased.  We aren’t stopping, we’ll continue as long as we have submissions so please keep them coming!

I thought that I might highlight a few links that have caught my eye.  I’ll probably do this every day for the next few days as I go through and read and digest.

You Will Never Take Away My Shoes

Loved this post!  It reminded me of the “I will wear purple” poem

The Best Thing DLA Allows Me To Do

As a former RDA member myself (I went for 14 or 15 years and only stopped when I went to uni) I was nodding along as I read and smiling as it brought back memories.

Take Two

Heather and I are blog friends.  Reading this post gave me new insight into her and her family.  I hadn’t realised how long she’d been dealing with DLA etc.

Why I Keep Trying.

Totally blown away by this post.  I didn’t expect the level of support we got from non disabled people.  Hoped for it but never really expected as much as we had.

Disability cuts don’t affect me

Love the honesty in this post and even though we are in very different situations I could relate to a lot of it.

I will post more links tomorrow, my concentration is shot from all the  work I’ve done this weekend and I can’t give the contributions the attention they deserve

>Emma’s Story

>

Many of you know that I’m the one who had the idea for One Month Before Heartbreak.  You know my name is Emma Crees, maybe that I’m FunkyFairy22 on twitter and perhaps even that my blog is A Writer In A Wheelchair.  But a lot of you don’t know very much about me.  I’ve not had time to read many of the contributions.  I will have to take several hours once this event is over to read them.  Spread over several days most likely.
I’m crazy busy with all this but loving it.  I’ve not had time for writing yet couldn’t sit by and let so many of you share such personal stories without sharing something more about who I am and my own story.  Some of you may have seen this before as it has been on The Broken of Britain blog as well.
Emma’s Story.
I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.
I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.
My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.
When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!
When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.
Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.
Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.
My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives
I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.
Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

>Just Trying

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I wrote this poem back in 2005 and thought it would be worth fishing out and sharing as a part of One Month Before Heartbreak.
I’m just trying
To be me
So much more than
The girl they see
I might have this thing
They call CP
But that isn’t
What defines me.
I am different from you
But I think I have it best
I need a wheelchair and always will.
Now I am different
But eventually
You will be
The same as me.
Thanks to the great equaliser called life
One day you too will experience this kind of strife
When you are old
You will understand what you’ve been told
But for now
I will try and explain it somehow.
Yet it is difficult to show
That which I innately know.
I have to spend
My life of wheels
My CP will never end.
I can live with it
Or long to be without it
The choice is mine
To be made with help divine.
When I was a child
I wanted to die
Life with CP
Seemed too much for me.
Time heals
What was once a punishment
Isn’t any longer
Instead it makes me stronger.
If when you get old
Your health time steals
And you must spend your life on wheels.
Remember what you have been told.
Hold your head up high
It will become normal as time flies by
As you learn how to cope
Don’t lose hope.
I’m just trying to be me.
Can’t you see?
Being me
Happens to include
This thing called CP.

By Emma Crees, A Writer In A Wheelchair

>This is Disability

>This is a post for One Month Before Heartbreak

This is an image I made several years ago in an attempt to show that I’m so much more than just a “disabled person.”  It has various small photos of me doing different things all round the ages.  Then it has words next to them describing who I am.  Including (not an exhaustive list of what’s on the image) sister, passionate, graduate, procrastinator and colourful. Others of the words are things I like.  For example writing, reading, swimming and sailing.  In the middle is a big blue box which has This is Disability written on it with the ability written in all caps.  Below that it has the following quote from Harry Potter and The Chamber of Secrets.

“It is our choices that define us, not our abilities.” Albus Dumbledore.

>More One Month Before Heartbreak Details

>

With just a few days to go before One Month Before Heartbreak I’m sure everyone wants to know what will happen on the day.  I know I do and I’m running it!
This is a work in progress so please bear with me/us.
There will be a master links list on The Broken of Britain Blog.  So please let us know where you’re post is so we can include it.  A brief idea of what it’s about is also useful (just topic not details).  You can do this in the comments on the blog or on twitter.
We also have a One Month Before Heartbreak blog where we hope to cross post as many submissions as possible.  If you are happy for us to cross post your submission please let us know.
Please try to comment on some of the things people post.  I would love if everyone who takes part could comment on at least one other post.  Blog comments rock and can be especially useful in a situation like this where people may be posting personal things.  It takes a lot of guts, please respect that.
If you see something you people like make sure to tell others about it.  Blog it, Facebook it, tweet it, e-mail us and let us know.  Shout it from the rooftops, even!  We want to get the word out about what the benefit cuts mean to us.  Share the details of the link list and our blog.
Equally, I hope that there will be several “highlights” posts from different bloggers after the event as a kind of round up.  If you do one I want to know about it!  Or if you have any ideas about One Month Before Heartbreak, let us know.
On Twitter? Use the hashtag #ombh in One Month Before Heartbreak tweets.  Or the Broken of Britain hashtag #TBofB.   #UKCuts and #disability are also useful hashtags if you can fit them in.
Consider changing your profile picture on Facebook, twitter or other social networking sites to the One Month Before Heartbreak logo for the 3 days of the event.  And posting the link to explain why.
We want to make as many people as possible aware of One Month Before Heartbreak.  E-mail your MP and tell them about us.  A template letter will be available from Sunday for people to use.
The most important thing I think for everyone involved is to enjoy it and stay safe.  No one is under any pressure to contribute on each of the days, or to take part at all.  Please don’t feel under any pressure to do more than you are able or comfortable doing.
And finally, a really really massive thank you to everyone who has helped to raise awareness and get the word out there so far.  I’m absolutely blown away by how big this is shaping up to be – and I couldn’t have done it without you all!
Emma

>Less than a week to go – One Month Before Heartbreak

>I need to write a post with some more details of One Month Before Heartbreak, I really do.  Hopefully if I don’t get that done tonight (I’m off out in about half an hour not sure for how long) I will get it up tomorrow.

But one really, really great thing you can do to help us promote One Month Before Heartbreak is to use this image that Lisa (@IconicImagery) made for us.  Put it on your blog.  Use it as your facebook profile pic or your avatar on twitter.  Or some other site that I either can’t think of or don’t know about (if you do think of another site, let me know. I’d hate to be missing a site I might love!)

It’s a purple triangle point downwards with a big red heard in the middle and splatters around it, a bit like blood.  At the top is says 1 Month Before Heartbreak, at the bottom The Broken of Britain.  And I absolutely love it. Love it.