File this under “you couldn’t make it up.”

Last Wednesday I got the news that I’ve been awarded ESA for two years. I’ve been put straight into the support group. It’s definitely the right decision and now I’ve had a chance to think about things and calm down I’m relieved its sorted and ok with it. But it’s not a comfortable place and if I’m completely honest I felt like I must be much more disabled than I realised.

I wrote more about that, the ESA process and how it relates to me over on Bea Magazine

And then yesterday I got a letter telling me about my DLA entitlement for this year. And all about how DLA is being replaced by PIP. I’ll be called for reassessment for that at some point.

So I just get to the point where I can stop worrying about ESA. And now they want me to worry about my DLA?! Fantastic*

I think you file that under “couldn’t make this shit up.”

*I’m not worrying about DLA because I have an indefinite award and the reassessment process for that category doesn’t even start until 2015 (meaning my ESA will come up for reassessment first most likely) but still….

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

A Dream Is A Wish Your Heart Makes…

I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.

I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)

Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.

So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.

My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.

I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.

I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.

In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.

No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.

And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.

Rekindled

I’m reading a good book at the moment.  I hope to finish it tonight and I’ll review it for my blog in the next few days most likely.  When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say.  And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise.  This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless.  As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence.  It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family.  My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh.  Those who lurk in the background.  The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect.  On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair.  I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past  “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough.  My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

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.

>You Know…

>…you have extreme symptoms when you go through them with your consultant and he stops you, checks he’s heard you right and when you confirm he has his response is “Jesus.”

Was running through my meds with the consultant at the hospital when he asked about the mefenamic acid.  I told him it’s for my periods and what they were like before I started it.

Jesus is probably about right, come to think of it.  They were pretty bad (skipping a month and then having a heavy 17 day long period was my worst ever) looking back.  Mefenamic Acid is working well though to keep the bleeding at slightly more normal levels.

The hospital appointment went well I think… but that’s the topic for another blog entry.

>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!).

>The Broken of Britain

>Last weekend a new campaign was set up about the proposed cuts and specifically to allow disabled people to campaign about them.  Because we are one of the groups who will be affected most severely by these cuts.  And the government have already admitted they’ve not looked into it fully.

The campaign is The Broken of Britain.

This afternoon I had a long chat on the phone with Kaliya who set it up.  It was really fun to get to talk to her after knowing her online for so long.  Just a shame we had such a serious topic to talk about.  I’m going to be helping with the campaign by doing stuff like keeping an eye on the blog and answering e-mails.

I also wrote a post for Scope on Monday about this project.  Spreading the word is one of the most important things people can do.  Even if you don’t feel able to share your story or take part in other ways, please consider sharing the link.

Reading the stories is humbling and it can be very hard.  I thought I’d seen a lot of benefit problems as a CAB adviser and knew how they could affect people.  I was wrong.

I just posted Emma’s Story – my own story – to The Broken of Britain blog.  It feels a little raw and it wasn’t easy.  I’ve shared some very personal stuff before through my blogs but this feels like a whole different level of personal and not overly comfortable. I thought about it for a long time and did consider being anonymous as those stories are also accepted. But I knew that if I wrote what I wanted to write and I continued to promote the project plenty of people would read it and know it was me.  Plus, if ever there was a time when I feel the need to stand up for what I believe in, it’s now.

Please consider supporting this project.