>Sometimes it’s hard to be a woman…

>I was so fed up and out of sorts yesterday and I didn’t really know why or what triggered it.  I just ended up getting into a huge downwards spiral of being sad about all the things that CP means I will never do or that I am unlikely to do.

This morning I awoke to find the red army in town.  And CP isn’t an issue today or not such a big one.

I am thankful for evening primrose oil (and to a lesser extent, antidepressants) which make my PMS much, much more manageable than it used to be.

And I am thankful for my CP.  Because there might be a few things CP will mean I won’t do but there’s a lot I have done that only happened because of CP.

>What Defines Me

>I was just sorting through a load of my old writings that I did for other places on the Internet as I am finally going to upload them to this website. I’ve decided to upload them seperate to this blog and link to them from the main wheelchairprincess.com page. Some of them are very long so that makes more sense. It does also mean, however, that it’s going to be another couple of days most likely before I get them up.

I do have one small piece that I wanted to share here and now. It’s an idea that I think I would like to take further at some point. It’s called “what defines me” and its words that describe who I am used to spell out what people see.

What Defines MeEmma, Dec 2005

Crippled
Extravagent
Real
Eloquent
Bolshie
Rebel
Able
Lively

Pessimistic
Annoying
Loud
Sarcastic
Young

(my friend Shiloh did one of these as well which can be seen here)

>Small Hints of Positive Change?

>As I was lying in bed this morning I thought my stomach looked and felt like it was smaller. And when I went to the loo right now I found myself still thinking the same once I was back in my chair. That’s pretty huge in more ways than one. My stomach is still huge but to feel a change after only five days is brilliant and to still feel it when sat up is even better.

Again I think it is a hydration thing but I do also think that less fizzy drinks (I have had a little diet lemonade) and basically no added sugar has played a huge part in reducing some of the bloating

Off to move my body 😉

>Where have all the Spoons gone?

>Day four without anything chocolate or coca-cola related. It was a little bit harder to do than the others partially because I was out most of the day shopping with Soph and I am so used getting a coke with my lunch when I’m out and picking up something sweet to take home to snack on. Wednesday and yesterday I was only briefly in places where I could have got treats and Thursday not at all. Today is the first day they were all around me so to speak and it was tough. Very tough. But I DID IT!!!

I have now decided however that Millie’s Cookies are THE EVIL. There are 3 branches in Oxford and I think we walked past all of them more than once (the city centre of Oxford where the shops are is actually really small) and they must use some sort of scent thing to entice people in and make them subconsciously want the goods because every time we got anywhere near one all I could smell were cookies and muffins and other yummy things. But I resisted and got to be even prouder of myself for that.
Three Four points of note:

Point the First

I actually do think I am having some symptoms of caffeine withdrawal but not the ones I anticipated and so I didn’t originally associate them with it. Wednesday was the first day that I “gave up being fat” and I was in bed at 10.30 which is early for me. Thursday I didn’t get up until nearly 10 am meaning I slept almost 12 hours and I was exhausted all day. As I was yesterday. As I am today. You know the Paula Cole song Where Have All the Cowboys Gone? Well in my world it’s been renamed Where have all the Spoons gone? and I really was singing that version when listening to it.

Also seriously I cannot stop peeing or feeling like I need to go and theres a bulldog clip squeezing my bladder if I just went to the loo. Possibly a UTI there but I don’t think so. I think it’s a hydration thing because caffeine does dehydrate and so having none when I am used to having lots is going to send things most crazy.

Point B

I have no motivation to do exercise or move my body in anyway shape or form today. I did exercise yesterday and Thursday but the lack of it today does mean that I have to have to do tomorrow and Monday to meet my twice in three days rule (as my first day Wednesday was exercise free so those three days are gone with). If I did work on the prospect of two days of exercise, one without today would be a free day but I am wibbling and worrying about that and the fact I will have to do it tomorrow and Monday now with no flexibility.

Well, that’s unless clonus counts as exercise because I had a lovely long go of it when I was at the hygienist earlier. Thankfully she didn’t notice because it mean I didn’t have to deal with questions about it. Questions are fine but she doesn’t know me very well and I have a feeling it could have deteriorated into a stopping the cleaning until the clonus stopped, pity and concern type thing which is very tough to handle!

Point iii

I am wearing trousers today that are tight but which I didn’t think would do up. I even managed to do them up again after going to the loo after lunch! yay!

4th Point

I told Sophie that I don’t want to be given an Easter Egg this year and I intend to tell my parents the same tomorrow. Even when Sophie said wouldn’t you like just a little one to celebrate your progress? I said no.

Bonus point:

Four days away from no missed meds in two months!!!

>Lent 2007 day three

>So, for Lent, I have given up being fat.

It’s not a secret but I have this feeling that if I’m going to succeed and succeed properly at doing this once and for all for the last time I am going to need to journal and I am going to need to journal just for me. I think having my own journal (or a part of this one) that no one else reads to share stuff in will possibly probably be a big help in making this truly the last time I do this to myself.

I am half toying with the idea of opening these entries to public view after Lent is over. But that just might be because I have always been very public and open in my blogging (and have never managed to actually keep a private journal, partially due to CP issues) so this is unusual for me.

So my biggest and main focus in “giving up being Fat” is on avoiding the two foods myost of my bad calories come from – not eating any chocolate at all – nothing with chocolate in it or flavoured chocolate – and no Coca-Cola products, not even Diet Coke. I am also trying to move my body two days out of three at present.
I drink probably a litre a day of real coke everyday and I have loads of chocolate and cake. When i actually sit down to think about what I’m eating I tend to disgust myself so I tend not to think about it – I also tend to buy my snacks from different places as I am very recognisable in my chair and I sometimes get embarrassed about what I’m buying and how often. More the how often than the what.

Today is day three of Lent. It;s also the second day running that I have gotten some exercise (yesterday dancing and today swimming). Three days without chocolate and coke has been way easier than I thought it would be and truthfully although I did wonder a lot on Wednesday about whether I was actually going to even try to do this I’ve found it relatively easy and no where near as hard as i had anticipated. I had actually anticipated being ill with headaches etc as the last time I gave up caffeine (on doctors orders) I was in bed by the end of the second day feeling lousy and craving a glass of the sweet brown fizzy stuff so much. And this time I gave up chocolate too, so, I was sure it was to be much, much worse.

My Gran always gave up chocolate for lent and she is the person I get my chocolate addiction from (although mine is much, much worse than hers). I have tried to give up chocolate as she did every year since 1999 and I think I managed it twice and gave up the rest of the times. It was a huge struggle each time but this year it’s not. I like to think that she is here with me giving the strength to do this and that my giving up chocolate for lent is a tribute to her and a way of keeping up one of her traditions.

My second big reason for wanting to do this is as follows. Ben and Geri are off traveling for six months and come back on 05/07/07 which I counted in my diary is 18 weeks yesterday. If I were to keep going with weightloss and lose 2lb a week for those weeks i could lose 36lb or two and a half stone before they come back. How shocked would they be?!?! I wouldn’t be skinny but I would be a hell of a lot closer and my BMI would be just in the overweight range instead of well above the beginning of the obese range.

I am shocked at how easy this is but I know I can do it.

Current stats as of 21/02 – weight 14st 9lb (205lb) BMI 35.7 – need to find the damn tape measure

>Ordinary Miracle

>

It’s not that usual when everything is beautiful
It’s just another ordinary miracle today

The sky knows when its time to snow
You don’t need to teach a seed to grow
It’s just another ordinary miracle today

Life is like a gift they say
Wrapped up for you everyday
Open up and find a way
To give some of your own

Isn’t it remarkable?
Like every time a raindrop falls
It’s just another ordinary miracle today

Birds in winter have their fling
And always make it home by spring
It’s just another ordinary miracle today

When you wake up everyday
Please don’t throw your dreams away
Hold them close to your heart
Cause we are all a part
Of the ordinary miracle

Ordinary miracle
Do you want to see a miracle?

Its seems so exceptional
Things just work out after all
It’s just another ordinary miracle today

The sun comes up and shines so bright
It disappears again at night
It’s just another ordinary miracle today

It’s just another ordinary miracle today

Ordinary Miracle – Sarah McLachlan

I love this song loads. I’m told that it’s in the Charlotte’s Web film that’s out at the moment which I’m actually not bothered about seeing (roll on May when the cinema opens here and I dont have to trek off on the train to go to the pictures). I read the book when I was much younger but I can’t remember too much about it’s plot.

There are some books from my childhood I still adore and re-read – I finished reading Goodnight Mr Tom by Michelle Magorian yesterday and that is a powerful tale that still amazes me. Unfortunately (or not, depending on how you look at it) Charlotte’s Web is not in that category and it’s just too much effort to go to the cinema to see the film. Maybe when it’s on DVD.

Anyway I think Sarah McLachlan is a hugely talented singer and I’ve always liked her songs. She has a way of putting really feeling and emotions into her songs – and that just makes them even more powerful than the lyrics would suggest.

Things just work out after all – that is something I’ve been trying to focus on a lot lately in hopes of leaving behind some of my stress, guilt, anger, and depression. Several people have told me it’s working and I can half see it for myself but not too clearly. So that is one of my favourite lines from the song.

And when you think about it, Nature is a miracle in so many ways. Ways that change with each day and moment that passes.

Its seems so exceptional
Things just work out after all
It’s just another ordinary miracle today

>I. Am. So. JEALOUS. Right. Now.

>My brother is off traveling for six months.  He went at the end of January with his girlfriend.  They started in Brazil (Rio), took a 24 hour bus journey and went to Argentina to see some waterfalls and then went back to Brazil (Sao Paulo).  Currently they are in Ecuador and next week they are going to the galapagos islands and the inca trail.  They are also going to several other places in South America, Australia, New Zealand and Asia.

He’s 21 and he’s going back to Australia for the second time which is pretty unbelievable when you think about it – I think he must have been 13 when we went in 1998 as I turned 17 out there and he is just under four years younger than me.  How rude is that?  How jealous am I?

I enjoyed my time in Australia more than my time in America and I desperately want to go back.  America I had such a bad experience that I could cheerfully miss it for the rest of my life.  Australian people were so accommodating and aware and friendly though.  Oh and Christmas in the sunshine was very nice if more than a little weird!
South America doesn’t bother me too much, Asia – well I wouldn’t mind a visit but it’s not high on my must visit list other than the fact that the flight to Australia is to long and I would have to break it if I went again.   Singapore half appeals to me as well but I’ve heard conflicting reports on accessibility.  New Zealand I’ve never been to and I would like to go just to see how it compares to Australia.

We’ve been keeping in touch with Ben and Geri by e-mail but tonight I got the chance to talk to Ben on MSN and to look at some photos of the trip so far.  Apparently it’s all amazing but Rio was possibly the best to date.  The photos are brilliant and I am very happy I got to speak with him but even more jealous than I was.

If that’s possible.

>To Remember Me

>

To Remember Me

By Robert N. Test

Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreakage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow. So that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.

Give my sins to the devil.

Give my soul to God.

My friend Shanie died four years ago yesterday and on Wednesday it will be seven years since her older sister, Lianne, who I was also friends with died.  They both had Cystic Fibrosis.

Organ Transplants gave them both extra time – Lianne had a heart lung transplant and gained two years (her own heart, which was healthy, was transplanted into another patient as the transplant was considered to have more chance of success if the heart was transplanted too), Shanie had a double lung transplant and gained a little more than a year of extra time.

I love the above poem and couldn’t think of a better way to honour my friends than by sharing it here.

“Please don’t take your organs to Heaven, Heaven knows we NEED them here”

>I love writing these “Letter Unsent” but I could do without it.

>Dear medical people of the world,

You know the part of medical school where they suggested telling your patients that the deterioration CP-ers tend to face once they hit their twenties is to be expected and just like that which frequently causes professional sports players to retire in their thirties? Yes, that part, you know what I mean. It was a shit part of medical school, it really was and you should have known better than to repeat it to me.

And also, telling me I can’t be getting worse as CP is “static” and need no more treatment other than to take more baclofen when you haven’t even examined me beyond my arm and I have stated that my biggest issue is my legs, I feel I am getting worse and given you examples of things I can no longer do because my spasticity is so high? Muchos shit, muchos.
Also when we had the discussion about the need for me to do my physio six million times a day and I told you I wasn’t going to play ball with that? Well, I realise that you probably got your response to that from the same crappy lecturer but still… Telling me that I must do my physio six million times a day and I should because if I were a professional ballerina I would have to stretch that many times a day and what’s the difference? Well here’s a clue. I’m not a ballerina, I don’t get paid to have CP and oh for gods sake just shut up.

And to various other medical people who have made similar comparisons throughout my life… well, I think I’ve made my point clearly enough.

If you were anything like I was as a student you spent the odd hour you should have been in lectures in the bar… you would have been much better spent to spend those lectures there instead of attending them and then harassing me with the shit you learnt there. Think of all the aftershock you could have drank and the games you could have played!

No love,

Emma

The top two paragraphs are what happened at my appt on Tuesday, the other example happened a couple of years ago.

>Short Version

>This is the short version

I’ve been in bed pretty much all the time since Tuesday with what my GP said was an acute migraine. I’ve said that I’ve had migraine’s before but I’ve not had one like that before and I hope I never do. It was nasty and really put paid to most of my abilities to such an extent I had to ring my parents at 6 am to get my dad to come take me to the loo. It’s over now and I am once again left incredibly grateful that as a general rule I can do things like that for myself.

The discussion of CP stuff with my GP was truthfully something of a waste of my time and I’m feeling a bit disheartened and angry about it all. I’ll come back to that tomorrow because I want to watch the Truth about Food in ten minutes and also I want to look something up which relates to the “new plan” I half have in mind now the NHS has failed me once again.