>Rollercoaster

>You know what it’s like when you’re on a rollercoaster? And you know that a pretty big twist is going to happen at some point but you don’t know when?

So you’re merrily sitting their enjoying the ride but then it starts to get faster and faster and to start with your enjoying it. But then it gets faster still and that huge twist in the track comes much sooner than you expected, before you were truly prepared for it. the shock of it sending your stomach into your mouth and the g-force involved in the move knocking the wind out of you and pushing you back and pinning you to your seat?

You think you’re enjoying it but your not sure and now the ride seems so much longer than you anticipated.

Welcome to my life today. It’s nothing bad, in fact it’s pretty good just not something I expected to happen today. However it is not something I want to tell all about right now. If I have told you about it, please respect my wishes and keep it away from the ‘net

>Odds and sods of news…

>I am wearing jeans that are a size smaller than usual. They are snug but relatively comfortable. And they look pretty damn good. Smaller jeans has been my goal since June and yay! I managed it.

I was told something yesterday that had no real impact on me, just as an FYI, but it made me soooo happy I was bouncing around the house for a good ten minutes afterward. This to me is actually incredibly positive news and may have the possibility of making certain situations a little better for me (a lot better is too much to hope for). So I have fewer/less worries and concerns today which is also good.

I met a friend for lunch in subway yesterday and was very impressed to discover that our new subway has a one-size fits all toilet for customers – and its a disabled one! I didn’t need to use it but will make a point of that next time because I’m intrigued as to how easy it is to maneuver into and around it. Lunch was great too. It is so good to now have a local friend who is so completely on my wavelength, my age and who gets the disability stuff too.

The latest Firefox upgrade (which I just downloaded a few days ago) has a built in spelling check function. And it’s American. It. Drives. Me. Crazy. No offense to any Americans who read this but it’s further proof for one of my friends who has a theory that 1) American’s as a society are rude and 2) They think they are the only people in the world who matter. Both of which I would tend to agree with to a certain degree. But we probably shouldn’t generalise like that because I am sure that several things we do make American’s think that we are rude too. And given how much I hate disability related generalisations, cultural ones are also something I should avoid! Meh… sorry.

Yesterday (Friday) I was proud of myself for managing to get up early and get myself to swimming in my powerchair. Swimming was really good fun and it led to other fun stuff so that really boosted my self esteem and happiness.  Today (Saturday) I am proud of the fact that I am wearing jeans which are a size smaller than usual! Need I say more?

>She talks my language!

>When I went to the disability employment adviser (dea) yesterday one of the things we discussed was fatigue and the fact that I will need to build up to doing all the hours I could manage for that reason.

Background as I understand it: With CP you don’t have a limited amount of energy as in some conditions, but because your body doesn’t work the way it should it takes more energy to do things than it would a so-called “normal” person. That’s why the spoon theory works so well as a model of what it’s like to have CP despite it originally being designed for invisible illnesses I think.

I have had tests done which showed it takes me something like 4x as much energy to walk and move around than the average able-bodied person. As far as I know that applies to all tasks as well but it is definite with walking – I think it was determined when I had a Gait Analysis done. That was last done when I was around 14 or 15 (and actually i think my last full GA was before then) so I’m not sure how that information applies currently. And also if I had it done now I would question it’s validity for any number or reasons including the fact that my condition is quite variable and more importantly what is the comparison to?
Anyway my brief lecture on CP and fatigue is now over and I will return you to your regularly scheduled update (tune in tomorrow for another CP details lecture if you’re lucky!)

As I said, we (dea and me) talked about fatigue. She told me that she thought probably to start with I would find I could manage work and not much else. I will get used to it and find I can cope with more as the months go on but the key here is going to be finding a balance that allows me to have something of a life as well. One of our strategies to deal with this (other than my only going for P/T work) is going to be to try to get me in work only in my immediate locality to cut down on commute times and therefore stress levels.

Two years ago when I first left uni I met with her and it was a very difficult conversation because Mum had said to me that she thought I would only manage part time and I went to the dea saying “My mum says this and i’m not sure I agree with her.” and she then turned round and told me that “I think your mum is right, Emma”. Now I have come to realise that what they tell me is the truth (I do not, however, see any truth in certain people from CAB thinking I’m not coping w/ my hours there). So that conversation (yesterdays) wasn’t very easy to have and did make me think that maybe it will be harder than I anticipated to find a job – not many jobs that suit me in this locality. But I was prepared to discuss fatigue this time and it was OK.

She did have one fatigue related comment that I *loved* and when I told my carer tonight she thought it was great too.

For the sake of posterity ~ The comment that made me think “I love this woman, she talks my language!”

Emma: “I’ve been working on doing more around the house for myself but I’ve told my carers they’ll probably need to do more of it again when I start work.”

DEA: “Yeah, well it’s not like dust is an antique. You can just ignore it. Until such time as dust becomes an antique you don’t have to take care of it.”

>What Have You Done Today To Make You Feel Proud?

>

I look into the window of my mind
Reflections of the fears I know I’ve left behind
I step out of the ordinary
I can feel my soul ascending
I am on my way
Can’t stop me now
And you can do the same

What have you done today to make you feel proud?
It’s never too late to try
What have you done today to make you feel proud?
You could be so many people
If you make that break for freedom
What have you done today to make you feel proud?

Still so many answers I don’t know
Realise that to question is how we grow
So I step out of the ordinary
I can feel my soul ascending
I am on my way
Can’t stop me now
And you can do the same

What have you done today to make you feel proud?
It’s never too late to try
What have you done today to make you feel proud?
You could be so many people
If you make that break for freedom
What have you done today to make you feel proud?

We need a change
Do it today
I can feel my spirit rising
We need a change
So do it today
‘Cause I can see a clear horizon

What have you done today to make you feel proud?
So what have you done today to make you feel proud?
‘Cause you could be so many people
If you make that break for freedom
So what have you done today to make you feel proud?
What have you done today to make you feel proud?
What have you done today
You could be so many people?
Just make that break for freedom
So what have you done today to make you feel proud?

Proud – Heather Small

Back at the beginning of the year when I was writing in my old blog for a while I made an effort to find one thing each day to be proud of and to record that thing in my blog. It was inspired by the above song which (surprisingly enough) is called Proud and is by Heather Small.

I loved doing it. I loved that each day I could find a sense of achievement be it getting out of bed, taking a shower and my meds on a very low day or something huge like doing something really big and important for a client. I think it was good for my self esteem and I like to think it helped me to recognise good things I had done easier. It definitely helped my depression. And I wish I’d kept it up.

Today I met with the disability employment adviser for the first time in two years. I made the comment that it was pretty stupid of me to give up on the idea of working for two years and let myself stagnate. Her response to that was Why? And she then went on to challenge me about that, asked me if I am in a better position now than I was and feel more able to work.

I was able to answer that I am moved into a more accessible, more central flat that is much better for me. I have a relatively stable support network of carers etc and I am getting out more all of which is helping to control my depression. Plus, two years at CAB has shown me what I can do and has improved my confidence there too. So I was able to answer here second question with a resounding Yes.

When I stopped and thought about it I have achieved a lot during those two years and have many things to be proud of.  But I need to have those things more obvious in my life.

So I will be listing what I’ve done each day that I am proud of.

Today I am proud of myself for going to see the DEA and for then following thru on her suggestions immediately.  She gave me some “homework” to do and suggested that I needed to do it by Tuesday.  I got home at 12 (having stopped at Sainsburys for something I needed for it) and by 3pm my “homework” was done and I don’t have to think about it now.  I am VERY proud of myself for that!

What have you done today to make yourself feel proud?  Tell me in the comments, I’d love to know!

>Dear people of the world,

Please keep your fingers crossed for me! I’m doing something exciting and a little scary.

Em xx

p.s. if anyone knows why my scanner will do 1 image fine and crash everytime I try to scan a second please let me know!

>Disability Questions

>I found these questions over on No Pity. These questions were compiled and put together for a Disability Panel by some of the women in Pickitt at Cornerstone University. What it is, is basically 10 questions you might have always had but never dared ask/ answer.

I thought that they were very interesting questions and it would be worthwhile to try to answer them as best as I could.

1) If you could re-live your life without having your disability, would you?
No! I like the person I am and that includes having CP and being in a wheelchair. Yes, at times it is really, REALLY tough but then there are the things that make it worth it. The things that would never have happened if I didn’t have CP. Like going on my sailing trip in september or when I got an article published a few years ago (the article was about my experiences as a disabled student) and I have many great friends who originally came into my life as some sort of professional (physio, carers etc) and stayed as friends. And really Emma and Emma’s CP are the same thing – having CP is so entwined in who I am and my personality that I wouldn’t be who I am with out it.

2) Do you want people to show interest by asking personal questions about your disability?
It depends on WHO asks, WHAT they ask, WHY they ask and HOW they ask. I don’t mind my friends and family asking as long as they are tactful and aren’t rude. To a certain extent I don’t mind my work colleagues asking questions. What I don’t like and would like to stop is people on the street coming up to me and asking what’s wrong with me or even how I manage to go to the toilet (which I have been stopped and asked). Because the questions tend to be rude, extremely personal and sometimes asked in a tactless way. And I don’t stop random guys on the street and ask them really personal questions like “what size clothes are you wearing?” or “did you have sex last night?” so why should I be expected to answer questions about why I’m in a chair, how I go to the loo, whether I will ever “get better” or anything like that. But maybe I should start telling people “I’ll answer yours if you answer mine” and asking dead personal questions which border on rude.

3) What is the hardest thing in life for you to do?

Actually, this question is a pretty hard one for me to answer. I’ve been thinking about it for several minutes to come up with an answer. I’m a bit stumped for one so all I can say is that physically the hardest thing for me to do is put socks and shoes on (I can’t lift my feet up without using my arms and struggle to reach them whilst in my wheelchair). The hardest non-physical thing for me to do is fight for disability rights – because it is so unending.

4) What is the hardest obstacle that you have to overcome often?

The fact that my disability (and by default, my life) is public property and sometimes I have very little control over it.. Every little thing in my life seems to need to be recorded somewhere be it by my social worker who includes the fact I go to RCV swimming group and volunteer at CAB in her reports. Or it is the carers who turn up an hour early because they expect me to be in and just abandon what I’m doing to work with them on making sure my support needs are met. Even the girl on the check out in sainsburys who tells me “I hope you get well. Really soon” is making my life public property because she forces me to reveal that I have always been in a chair and always will be in a chair and then I have to try to explain that it really is ok. I blame the Medical Model for this, especially for the fact that people are so shocked when I fight to have privacy in my life. And so really the hardest obstacle I have to overcome often (nearly everyday lately, it seems) is the medical model and the fight for inclusion, equality and recognition of the Social Model as the one that should be used. If we really must have a model of disability, that is.

I realise that as a blogger I am making my life public property through the writings and photos and other things that I post to this website. However, that is done on my terms – and I have control over what is included which gives me a privacy lacking in other areas of my life. And, actually, my blog is one of the ways I fight this issue. I hope that by sharing my experiences it will help to show the invalidity of the medical model and the importance of accepting and implementing the social model.

5) Do you resent people that try to help you?

I am often irritated and annoyed by people that try to help me. Resent is a good word but only on very rare occasions such as when I have explained repeatedly that the help is not needed yet it is forced on me. Otherwise, I would say that resent is too strong a word as for the most part people who simply take over and start pushing my chair or help in other ways do so because they don’t realise its both unnecessary and rude. Generally I find that once I say, “thank you I am fine” they let me be. Sometimes however they act offended that I won’t accept the help or argue the point and that’s where the irritation and annoyance come from.

6) Would you rather do things on your own?

I fully accept my limitations and will and frequently do ask for help with the things that I cannot manage or struggle with. Those that I struggle with I am working on improving where possible with help. But other than that I am fiercely independant and if I can do something for myself I will, even if I cannot do all of the task myself. I consider that doing things for me that I can do for myself even if I appear to be struggling or it takes me a long time is just not on. By doing that you take away some of the stuff I can do and thus disable me more. That was the hardest part of my JST trip – working with a buddy who, much as I got on really well with her, found it damn near impossible to not help me. One of the other girls was always going on about how independant she was and all I could think was “so I am – when I am allowed.”

7) Do you feel any anger towards God because of your disability?

Short answer – No.

Long Answer – I did go through a period of “Why me?” when I was 13 or so and realised that this was forever. I don’t think I ever hated God because of that. My “why me?” period came about once I realised that I would be disabled forever. Prior to that I’d always thought that one day I would get better – mostly because physios etc told me to do my exercises so my legs would get better. What I’d never realised was that the better they were talking about was not the never ever needing a wheelchair again that I’d assumed it was. Personally I believe they should have used to the term “stronger”. I actually believe (and have done for quite some years) that I have CP because someone had too and I was given it because my soul is strong enough to cope with it. Also as my CP was caused by being a premature baby, the alternative was CP or death and so I am grateful to have it as the alternative is too hard to even contemplate.

8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

People asking me questions about my disability really annoys me but what I dislike most is when someone asks a person I am with questions about me as though I was unable to understand/answer them myself. It’s nothing but pain rudeness and demonstrates the prevalence of the medical model. And also if it comes to people asking if I’m cold/thirsty/hungry – chances are I know that I am/not but my friends don’t!

An example that if you’ve read my essays you’ll have heard before (because I cut and pasted it from one of them):
When I went home for the Easter holiday in my first year at university I went on a trip to London with my Dad and brother. We were sat on the train home, my brother was sat next to me and my Dad opposite next to an older lady who was travelling alone. She had obviously seen us get on together and after we had been sat there for a while started asking my Dad about me. “Is she your daughter?” “What’s wrong with her?” “How old is she?” He answered all those questions with one or two word answers, probably not wanting to tell her but resigned to the fact that people want to know all the gory details. Then she asked another question:

“Can she hear and speak?”

Dad just snapped “She’s at university” and turned away. My mobile rang and I answered it laughing inwardly at the woman’s expression as I spent the rest of the journey chatting away to a friend.

That’s a situation where I would be annoyed regardless but had her questions been directed to me it would have been easier to deal with and I would have been (slightly) happier about answering.

9) What is the best way for us to help you?

Do not treat me like a child; treat me as you would like to be treated. Treat me as you would anyone without a disability and wait until I ask before you help me – even if it seems to you that I am struggling. And should I ask for help – please help me in exactly the way I have specified (if I have specified to that detail). I know the best way I should be helped and sometimes doing other things can make things worse for me. – e.g. when walking, people who hold my arm instead of letting me hold their arm tend to throw me off balance and my balance is poor enough as it is meaning my chance of falling is increased! I am also well aware that some of my “how to help me” requests go against human nature and don’t make sense to others but they are there for a reason. The one specific one I am thinking of is the fact that I ask everyone who I walk around on a regular basis that if I should start to fall to please let me fall and don’t try to catch me. Generally I am able to fall in a way that means I don’t hurt myself badly – cuts, bruises and one chipped bone in 24 years of falls ain’t bad (this isn;’t counting my wheelchair diving in May this year) And usually if I’m gonna go, I’m gonna go regardless and I can’t think of a time I’ve been caught and not ended up going anyway – often taking my helper with me!

Basically the best way to help me is to respect me and my wishes and accept that I know my limitations and abilities better than anyone else.

10) Do you feel awkward when you are around people that are different than you?

I don’t really understand this question. I also think this question would be rude were it not for the fact that these questions were designed for enlightenment and that as much as I complain about rude questions in this situation my anger would make things worse. The people who wrote these questions are unlikely to ever completely understand my situation and this is why they ask.

So, back to the question. This is a really, really silly question ;o) Everyone is different to everyone else. Men are different from women, gays are different from straight people and I am different from my friend Sarah despite the fact that we grew up together, we both have CP and both use wheelchairs, I don’t feel awkward around people who are different to me because there is no one else who is like me – I am an individual and damn proud of that fact!

>Hope

>I was looking for a quote about hope to share tonight because I feel very full of hope about my future and how things seem to be panning out of me at this present moment in time. I really do have a huge sense of peace and wellbeing and I realise looking at just how well I have handled things I expected to be difficult just how much of a role hope has played in this. The knowledge that everything will be ok and the hope that this belief is true I mean.

Well, this isn’t exactly a quote but I think it does express exactly what I want and need it too.

Four candles slowly burned. The ambiance was soft, one could almost hear them talking…

The first candle said, “I am Peace!” – “The world is full of anger and fighting. Nobody can keep me lit.” Then the flame of Peace went out completely.

he second candle said, “I am Faith!” – “I am no longer indispensable. It doesn’t make sense that I stay lit another moment.” Just then a breeze softly blew of Faith’s flame.

Sadly the third candle began to speak. “I am Love” – “People don’t understand my importance, so they put me aside. People even forget to Love the people nearest to them, I haven’t the strength to stay lit.”

And waiting no longer Love’s flame went out.

Suddenly…. A child entered the room and saw the three unlit candles…

Saying this the child began to cry…

The fourth candle answered “Don’t worry I am Hope!” – “While I am still burning we can still relight the other candles.”

With shinning eyes the child took the candle of Hope and relit the other candles…

The flame of Hope should never go out from your life.

…and with Hope each of us can live a life of Peace, Faith & Love!


~author unknown

If you think about the place I am in my life at the moment, that’s a pretty appropriate piece for me and reading it helped me a lot.

>Audio Blog 2

>Audio post time again! Please let me know if this works for you and also if, for whatever reason, you need audio posts transcribed please let me know and I’ll do it.

enjoy!

I just tried to embed this here but for reasons unknown it would work. So instead, click this link.

>One Day In History

>

I wrote the following for the One Day In History project which is trying to get Britain’s biggest blog written about people’s experiences on an “ordinary tuesday” – today.

Bit of a rubbish day today. Well, a good day but I didn’t have any concrete plans and I’ve a lot on my mind so I’m feeling a bit down. I always get a bit down when I don’t really have anything concrete to do. Good god I wish my depression would just go away. But then in a strange way I’m glad I have it because I couldn’t have gone on like I was and also I’ve learnt some important things from it. I’ve learnt them now though so it can go away. Immediately.

I’ve just been reading and hanging out on the computer for the most part. I was reading a Chalet School book. I first read those when I was a child and I am rediscovering them now. They are set in and around the Second World War (although that is barely touched on which I think is a shame). I’m really kicking myself for having got rid of most of my copies. But I am loving ebay for buying more.

That’s a period of our history that really interests me. I was trying to figure out the other day why exactly that intrigues me and not the First World War but I don’t know. Maybe because I grew up with the CS books and also I loved watching Goodnight Sweetheart on TV (I’ve been watching repeats of that on TV today). It was a favourite part of my GCSE History at school too. I keep meaning to have a look on Wikipedia or go to the library for some books about it so I can read more (trying to spend less time on the computer) but I am a procrastination princess and I’ve not managed it yet.

I did my food shopping today and then had to go back out again later for a jobs paper and the post office. Someone tried to stop me and tell me my electric wheelchair wouldn’t fit through the bars at the end of the alley but it did and I told her I’ve done it several times which seemed to shock her. She then informed me that “you passed your driving test”. Oh and my powerchair is making a weird noise (needs a new caster) and someone stopped me in sainsburys last week to inform me that he would go mad if he had to sit in a wheelchair making a noise like that all the time. Which was just terrific, I wish people would stop making random comments and assumptions about my disability when they meet me on the street. So bloody rude and irritating. I informed that guy that “it wasn’t any of his business, but it was making the noise because it was broken, not that it was anything to do with him” in those exact words and he just looked at me and went “Well bye then” in a false seeming cheery voice.

On the same topic, an old friend of mine bumped into my mum earlier today and spent ages wittering on to her about was she watching x-factor and the fact that there’s a woman in a wheelchair as one of the contestants. That annoyed me more I think because, yes we haven’t seen each other except in passing for several years, but she should know me by now and know that there is a lot more to my life and my family’s lives than the fact that I’ve got CP and use a chair. For gods sake you bump into my mum in town, ask her how I am, what am I up to, hows the rest of the family or even how she is. It would be a very refreshing change. And FWIW, I am watching x-factor. Because I like the show. I do like Kerry and my god she can sing. But I’m not watching it just because she’s in a chair. I also love the fact that they had to redesign the set when Sharon put her in her final four because they couldn’t accommodate her chair. Although personally I do wonder whether that ramp is particularly safe, it looks really steep. Of course I am paranoid since my accident in Madrid. My nose still aches a little at times.

I want to quit my job. I picked up the jobs paper tonight but nothing interesting – a few maybes but I’m unsure because I couldn’t manage full time work and the hours weren’t stated clearly. I hate that having CP is such an issue volunteering at CAB and that it keeps stopping being an issue and the starting again. I think basically it’s one specific person – and several others have had problems or have commented that this person is a “tough nut”. Still, I think I will be left there soon. I was texting with Trudi for a while this evening and it helped to get it all off my chest to her. MSN with soph helped too but I worry a little about sharing with her now shes so far away at uni and alone.

I chatted with Sarah on MSN too about the disability awareness “fight” and how goddamn sick of it I am. I do feel at the moment like the fight is all I’m doing and I want/need more. It will come though, it always does. It’s nice because she understands. But I wish she didn’t have too. I wish I didn’t have to, even though I would never wish not to be disabled because it’s part of who I am and I like who I am. I just wish the rest of the world made it easier. I hope someday someone reads this time capsule blog and that they live in that world.

That is why I fight. To make it better for me – and those who come in the future.

>Life is good but pain is nasty

>My pain levels have been bad for pretty much my entire body over the last weekend or even slightly longer.  And my bad hip is flaring up and reminding me of its badness at least three times a day if not more often, something which it hasn’t done for probably a year.

I am seeing my GP on Wednesday to confirm whether or not I am still disabled for the benefits agency.  It’s such a waste of time.  Because theres always the possibility that my incurable condition got cured and/or I got better and I just didn’t notice because I was having so much fun in my wheelchair.

Hmm, yeah. Pain makes me a sarky.   As does the lovely, lovely benefits agency.  Put the two together and well…
The good thing about seeing my GP on weds is that I can ask her about possibly switching to the next strength up of co-codamol.  Or something.  I know if I got better about taking it clock round rather than just when I am in pain (or before bed whcih is something I just reintroduced into my routine last week – works to help me sleep) it would probably help BUT the trouble is I generally don’t need it all the time and even when I DO get bad and take it it wears off before I can take the next dose.

Part of me really really misses the days when I was a child and my life was much less medically complicated and I once went to my GP only to realise it was the first time in two years.  Right about now if I can go a week or even two without going to the medical centre I consider it a good thing between the nurse, GP and counsellor.

But, then I don’t miss those less complicated days.

Because, for the most past, I like who I am right now.  I am so much more confident than I was and I am assertive.  My carers treat me much better than I used to get treated (not that the academic support/carers I had at school were bad, just the set up caused issues) and I am better able to express my needs and ensure that my thoughts, my feelings, my needs are what are taken into account and listened too.  I can do a lot more for myself now and am fiercely independant – what has been described as too independant by more than one person.  I am not forced to manage with half arsed access very often and I have control over what is suitable for me and what is not (for the most part).

Not needing to worry about doctors appointments and doses of medication and collecting Rx’s would be nice.  So would not benefits agency hassle and direct payment paperwork.

But then I think back to the days before I had those problems.  To the timid shy little girl who had no control over her life.  Had anxiety attacks nearly every day during the two years of her GCSE’s, and when she did find the courage to complain about how she was treated was told she had misunderstood the situation.  Who was forced to do things by her school that a psychologist later stopped because they were tantamount to emotional abuse.
And I’ll take these problems anyday.  Yes I have problems now.  But the problems I had before were so much worse and I really didn’t like myself then.  Now I do.  And being in pain is a horrible feeling, yet life is good.
So yeah, challenges related to the “practice” of medicine.  I’ll take them, anyday.