>Sick and Tired of Always Being Sick and Tired (and ranting about it too)

>Yesterdays drugged upness? Yeah, it wasn’t just the drugs that had me feeling out of it and dizzy. And because of that I now have added more drugs to the cocktail I’m taking. I’m telling you we just need some vodka and we could have a killer party. Only the new drugs that got added in today are Abx (cefalexin) and so no vodka for me!

I have a uti. Bastard infection. A bad one too. I could hardly tolerate sitting in my wheelchair by late last night and early this morning because I was so dizzy. And I guess I must have sounded really pathetic on the phone this morning. The receptionist told me the doc would call me back and said it would be soon but was then questioning me as to whether it was really really urgent or could i wait half an hour or so. So I am on my second lot of Abx in a month. 2006 is not a healthy year for me it seems but it is healthier than 2004 – which will forever be known as the year of the Abx!
I was supposed to be working this morning and then shopping this afternoon and on to dinner and drinks. I didn’t go to work… it’s my first day off sick since April which I’m pretty proud of. Especially because it’s not a depression off sick day either. Kat is home from Madrid for the week and unfortunately we couldn’t rearrange our get together so she came here instead and we watched a dvd and ordered pizza.

My shoulder/neck issue seems a little better today but still quite painful. Still at least if I have to be falling apart at the seams I’m doing it this week! It would suck even more if it were next week.

And of course, UTI’s are my favourite infections. I have had recurrent/chronic UTI before and I am freaking out that this is going to be the same deal once again. It doesn’t help that the Abx are low dose. I was already freaking out about some other stuff so it’s just carried over.

I am sooooo hacked off with my care agency. I can’t decide whether I should be bothered about what happened but I am extremely pissed off over the way they acted over it. I think what I mean is that what happened bothered me at the time but now I’m more angry about the way it was handled. Double standards and guilt and all that shit. My carers aren’t the problem, the organisation and office staff are the issue. In fact, most of my carers are great. Well, today’s did turn round at one point and go “Em! Shut up floss!” but that’s what I needed her to do – I was in a stress about having had to get her to go to the pharmacy for me and kept apologising.

Side Note: Rumour has it the pharmacist was really really good looking. Bugger it. Why is it that whenever I go it’s this really nasty huge woman (she is really abrupt with you if you question her or she wants to question you – I have had a falling out with her before over not giving me all my drugs) and when Sam goes for me she gets a really gorgeous bloke to give her the drugs?!?!

S’not fair!!!

>Drugs are good, mmmkay? (Ones you get on an Rx that is!)

>I am very very very drugged up tonight. But not really drugged up enough. I hate to take a lot of pain meds and baclofen because I hate how fuzzy it makes me feel. Quite often I chose to remain in “plus pain” (more pain than usual) than take additional drugs. But after a week of additional pain with it being worse today than usual I had to cave and take some pain drugs. Tonight I feel really fuzzy but I still have pain. I could cry but I don’t want to and maybe even can’t/

I’ve had a total of 70mg of baclofen today and two full doses of co-codamol. I think that’s the most baclofen I ever took in one day and ooooh boy can I tell that i took it.

I was planning to write about what exactly got done to me that has caused me to be in plus pain but I can’t manage it. Short version: Some fuckwit thought they were helping me and instead hurt me. I am now panicing that it will affect my trip and I could kill them.

>Scrapbook Your Heart Out

>Scrapbook page of Sailability Pics

This is the first scrapbook page I did (ever!). It is silver wrapping paper cut roughly to size which covers the page and then the photos are cut to size and mounted on bright blue paper and stuck on. The title “Sailability 2006” was writen on in blue wax crayon. That was for no other reason than it was the first blue thing I found to write with that wasn’t a biro! My spatial awareness issues caused me some issues with the cutting here, particularly with the silver paper and so the page itself is a bit battered and cut on a schew.


Sisters Scrapbook Page

I had several pictures of me and Soph (the lil sis) and I wanted to do a page of them. There are three pictures of the two of us together (taken at the meal for her 18th, the mini gathering for my mum’s birthday and the party for soph’s 18th – three days running interestingly enought) and also one each of us individually. This isn’t what I had planned to do but is the result and I am extremely pleased with it.

Purple is my favourite colour and so the strippy blue, purple. mauve and white scrapbooking paper was perfect for the background. The top corners have been cut off some of the photos to allow more to fit and to provide visual interest. The title of the page was written in a purple felt tip on purple sugar type paper – each letter is cut out individually and the right hand edges overlap (originally I had planned to scatter the letters over the page but it wouldn’t fit) giving a kind of layered affect. In the bottom right is another piece of purple sugar paper on which is written “Sisters are friends chosen by nature.” The quote was found on the internet and referred to brothers but I decided to take artistic liberty and change it!


Scrapbook page of Old Orleans meal for Soph's 18th

This is a page of pictures which were taken when we went out on Soph’s actual birthday to eat at Orld Orleans. Pink is her favourite colour and her party (held two days later) was pink themed and so I had to use a pink background. I chose spotty because I thought it was most “Sophinda” like. The title is written on the right in the middle and is in pink felt tip but hindsight suggests black would have been easier to read! The picture on the bottom right is probably my favourite as it has a nice feeling of togetherness and ending.


Sealife Scrapbook!

Pictures taken on a trip to the sealife centre in Birmingham with friends from uni (fulfilling one of my 101 in 1001 goals) in June 2006.

The background is blue sugar paper which has been cut into strips. A dolphin shaped punch has been used to cut a pattern out and then the strips were glued onto the page. The cut outs have been stuck onto another piece of paper for an as yet unfinished second page of sealife pics. A regular black pen has been used to write “Under the sea” on one side of the middle photo and then “Sealife Centre, Birmingham” and the exact date of the trip on the other.

>Photos, musings on weight

>My weight is pretty much back to where it was when my Gran died (I still hate typing those words) – I can’t believe it’s been a month (tomorrow) since she left us. In some ways it feels like so little time and in others, so long.
I am ambivilous about my weight at the moment to be honest. I know I am taking baby steps to losing weight again and I am proud of those. But I just feel blah and numb and like I could care less that I gained some weight back and then lost it again. It seems kind of petty.

And then we come back to the fact that right after my Gran died I didn’t eat properly at all for about a week. I lost another four or so pounds and saw 20 lb loss – or 10% of my starting weight. I know that wasn’t healthy and I knew it wouldn’t last. I told myself that I didn’t mind that… I was kidding myself.

I never wrote about losing those extra lb here because I knew it wasn’t “real” or “true” weightloss or whatever you want to call it. And when I wrote that I had regained 3lb from what the ticker said? The ticker didn’t show those extra 4lb and my gain was those back + the 3 I talked about. That;’s why I was in such a spin.

I’m coming out of the spin now I know but… meh!

I don’t wanna feel like this any more.

Please can my mental energies just rewind a month or so to the time when I was “In The Zone” so to speak and this was easy?!

I wish I never would have got anything near looking like this… I wish I would have gained some self confidence, self respect, willpower and pride in myself eight years ago when my weight began to get out of control.

I look so horrible in that photo! I know it is a bad photo but I still hate that I have photos in which I look so covered in rolls of fat. I’m just posting the thumbnail of that pic… you can click to view the fullsize if you want.

If I were feeling able to be realistic and less bogged down in emotionals and chemical imbalances that mess up my thought processes, I would ignore that photo and I know I am letting my illness (depression) win with this entry.

I do have a pretty good photo which was taken an hour or two after the one above… I guess I should post that too. Both of these were taken last night. As I like this I will let you see the full size here.

Dancing Girl... Not quite so fat!

Going back to making fair comments I should add I guess that I was horribly stressed out in the first pic about something that had just happened and was happier and dancing in the second which I think helps a lot!

>No Mistakes

> He maketh no mistake

My Father’s way may twist and turn,
My heart may throb and ache,
But in my soul I’m glad to know,
He maketh no mistake.

My cherished plans may go astray,
My hopes may fade away,
But I’ll trust my Lord to lead
For He doth know the way.

Tho’ night be dark, and it may seem
That day will never break,
I’ll pin my faith, my all in Him,
He maketh no mistake.

There’s so much now I cannot see,
My eyesight’s far too dim;
But come what may, I’ll simply trust
And leave it all to Him.

For by and by the mist will lift
And plain it all He’ll make,
Through all the way, tho’ dark to me
He made not one mistake.

~A. M. Overton

To me, this piece illustrates my belief that everything happens for a reason. We may not know the reason and to us it may seem wrong but there is a reason. If we are lucky and we look hard enough that reason will become clear.

I have written before about how I believe that having CP is what is right for me. That I have it because my soul is strong enough to cope with it. That too is shown by the words of this piece.

Without a doubt I know that the path I walk is not the one my parents had hoped for me when I was a baby. It is not necessarily the path I would have chosen for myself – as little as two years ago I could never of imagined being where I am in life now. I could not fathom the Peace I feel in this place too.

My path is not a straight one, life is not that simple and at times the life I lead is hard and I wish it were not as it is. But I also know that I have a purpose in this life and that make the most of it I must.

I am Emma. I have CP and I suffer from depression. I use a wheelchair, dye my hair. I swim and craft, sail and advise. I have issues with pain and fatigue. I am who I am, I am what is right for the person I am and I will become what is right for the person who I will be.

There were no mistakes in the making of me.

>Militant Miss Emma

>My mum and I went shopping on Wednesday to get me some stuff for my trip. We had an extremely successful trip and didn’t spend anything like as much as I thought we might. So I got: a pair of boots, a waterproof warm jacket, two fleeces, a bum bag, a cord to keep my glasses on, some warm socks, some waterproof trousers and some cargo pants. I also got some scrapbooking stuff (loads of it) but obviously that wasn’t for my trip!

We also had several disability rights/disability awareness/downright throwing a strop about the way the disabled are treated moments!

First I got to the station (late as usual) and I couldn’t get into the station because a taxi driver had gone into the shop and left his taxi blocking the only dropped curb! Mum was already in the stations and luckily spotted me so went and got one of the security guys in the station but he was no help. Then the taxi driver came back and just went “Sorry my love” in a really off hand way. I tried to ask him not to park there again but he wasn’t listening to me. I intend to write to the taxi firm as it’s not the first time that’s happened and also to send a copy to the manager of the station to see if they can put a bollard there or somehing.

Then we went into Blacks to look at getting me some boots – we’d already been to Millets and got me some stuff but no boots. From the outside it looks like a pretty big relatively new shop. I learnt from the shop assistant that it was only opened two years ago and it is pretty big. So we were annoyed when the answer to our asking if they had a lift was no. Mum went “and how are we supposed to access the good we want then?”

Got to give the girl working there her due, she was not at all phased by that. She asked what it was we wanted and confirmed that they were upstairs offering to go bring some down for us. So she called another member of staff down to watch the shop and after asking me lots of questions about size, use, colour, material, general preferences and price went to see what she could find. She even seemed to understand about my CP related preferences and the pair she found suited them (might have just been luck though) – she only brought one pair down and i loved them.

I did think about getting her to bring me several other pairs down just to check I had the best but didn’t. Part of me now wishes I had because what if? But my biggest what if about that situation is that if I had gone upstairs I might have spotted a pair that weren’t along the lines of what I had told her but which were suitable. Blah. I shouldn’t tie myself in knots over this, I have great boots and Blacks too will be getting a letter about their access issues.

The people who own the shop my mum works in also own another branch in Swindon. So we popped into say hello. I’ve met both of the ladies who work there before but only briefly. We talked to them for a little while and then headed out.

A few hours later we stopped for a drink and I was ready to get moving again before mum was so I went off by myself to do a few places like republic/dorothy perkins/h&m – places that weren’t for my trip but I just wanted to go to. Mum bumped into one of the ladies from the shop again. Who commented that she “didn’t think she’d met that daughter before.” Mum said she was sure she had and I’d said I’d met both of them before.

She say’s “no the daughter I met was in a wheelchair and had long black hair.”

“yeah, that’s Em she dyes her hair all the time.”

“But you have two daughters”

“Yeah but it must have been Em if you met my daughter in a wheelchair”

“But you have two daughters in wheelchairs.”

“No… one daughter in a wheelchair and one not.” (notice my poor brother got no mention)

“Oh [other lady] told me both your daughters were in wheelchairs and I thought that was right… I didn’t recognise her”

I am deciding to assume that it’s my short pink streaked hair that turned me into a karma chameleon as far as she’s concerned and not that it’s my weight! And also on writing that story out I am noticing that whilst I laughed and laughed when I heard it it’s not really blog worthy because it doesn’t seem funny in writing. I guess it helps if you know the other person. Not deleting it tho… can’t be bothered.

And you’ve really gotta feel sorry for the guy working in Yatess when we went for lunch. First off they kept us waiting f-o-r-e-v-e-r for our food and we moaned at him. Then I decided to take advantage of their disabled toilet. It was disgusting. I didn’t take a close look because once I caught a glimpse of the colour of the toilet I was out of there. I told Mum and then went to the bar to tell them and ask them to clean it.

There was one person at the end of the bar I was at serving and one right down the other end. So they guy closest to me served one man and then two more came up (seperately) they got there after me yet he served both of them first. The person at the other end of the bar also didn’t come to me although she did go to the person standing on my other side… I didn’t notice when they came. I was not a happy girlie and Mum had noticed and came up behind me. I had decided that if they served one more person who’d skipped in front of me when he was free again I would raise all kinds of holy heck but mum had had enough.

The guy we’d moaned at had just come onto the bar and when the otehr guy went to serve someone else who had skipped in front Mum went MENTAL. And so did I. We went off on one about my being ignored, and also about the state of the toilets. I was in a stress and said we’d leave and not be back but mum said No and made several points to them about how difficult disabled toilet finding can be and that it had been urgent we spoke to them yet were ignored.. We were miles from the nearest place that we knew had a public disabled loo (I suspect Revolution which was next door had one or the pub opposite but we couldn’t just go in and use the loo!). So not only did we insist that they cleaned the disabled toilet, mum told them they had to do it right now because they’d kept us waiting and I really did have to go to the loo and we would wait.

The guy we’d complained to about the food had not been at fault here (because he came on the bar just as we kicked off at them) but he had to deal with us complaining for a second time and then clean the loo. He was really nice about it and we did say to him that we recognised that he hadn’t been on the bar and wasn’t at fault. He also said that he understood because his brother is disabled. Has anyone else noticed that people often say “I understand because…” when you moan and you’re never convinced they really do they just think they do?

Anyway he cleaned it and came back to tell me and apologise again… I went to the loo and to be frank they need to rip the whole thing out and replace it because it was still pretty grim and if i hadn’t of known it had just been cleaned (and seen him go in there with cleaning stuff) I would have complained about the cleanliness. It was better tho.

Do you know what the best bit of all that was?

When I was ranting and raving at the guy I went:

“I am absolutely appalled. I know my wheelchair is invisible but I. Am. Not. I have PINK hair for christs sake!!!!”

Best disability awareness/disability rights line I have ever come out with in the whole history of the world if I do say so myself.

>But I am reminded of the line from the friends theme song

“Your mother warned you there’d be days like these… but she didn’t tell you when the world was rough you’d be down on your knees.”

For me that day was annoying and a little tough but not that bad… I hope my complaints and comments will help prevent someone else from having those problems. Because I’ve had days when issues like that have had me down on my knees so to speak and it sucks. it really, really does.

>Mixed Bag – Results, Illness, Skirts and Research

>Well, A’Level results were today and Soph has hers.  I remember when I got my degree results one of my friends posted what I had to her journal (I text her) before I got online and it irritated the hell out of me.  So, I’m gonna leave the details for now and just say that the girl done good.

The girl is also sick, my carer tonight wasn’t too good and I don’t feel particularly fabulous either… I think there is a nasty sicky bug going round as a couple of people I work with haven’t been great but I am hoping mine is my usual first day of periodness.

I’m wearing a denim skirt tonight that I’ve not had very long.  And the fastening broke earlier.  One of my colleagues managed to fix it but then when I went to the loo a bit later the fastening snapped off completely so I had to walk back accross the waiting room with my skirt slipping down the whole way.  Fun!  Interestingly enough we were wearing pretty much identical skirts.  I thought it was funny but she seemed to get into a bit of a flap about it and was like “we’ve got a problem!  we’re wearing the same skirt!” which I found even funnier but I didn’t let it show… I think she might have been joking but I’m not 100 convinced.

I was interviewed for a research study on health conditions in employment this evening.  Basically I just talked to the researcher on the phone for about 25 minutes or so.  It was really interesting and of course I just loved talking about me and my experiences :p Also I believe in making a difference for myself and other disabled people and maybe helping w/ the study was a good way of doing that!

This is pretty much guaranteed to be a two update day because I still have to finish writing the update I started last night so check back later!

>Sorrow and Delight

>”When you are sorrowful
Look again in your heart
And you shall see that in truth
You are weeping for that
Which has been your delight”

~ Kahlil Gibrain

Sums up what I’ve been trying to say about the death of loved ones and particularly the death of my Gran better than I ever could.

I love when surfing the internet I randomly find somehting that calls out to me and strikes a cord.

>Battling on to losin’ it once more.

>No picture post… I can’t find my camera. I am very annoyed by that but very pleased with what I wanted to take photos of! Photos tomorrow.
It is absolutely pitch black outside, you would think it was more like 11pm than twenty to ten. And it was pretty freezing today… more like October than August… I was very tempted to put the heating on but I couldn’t bring myself to at this time of year.

I feel fat. But I’ve been working hard at watching my diet today. It’s driven me crazy at times and Soph deserves a medal for putting up with my ranting about how I couldn’t find my camera/was hungry/wanted chocolate/had hardly any coca schmola today. I’ve been exercising too – I danced around my bedroom for 35 minutes (I made a playlist on iTunes for workout purposes) and Soph and I walked (I wheeled) to the post box at the end of my road and back. I made up a latte mug of lemon and lime tea and sipping at that has helped my hunger.

I am stressed out about my weight and my trip… I’ve gained about three pounds from what the ticker says on my weightloss page (but am due my period around this week – my cycle is all out of sync) and if possible I would like to lose those 3 pounds + 4 more before I go.

It should be doable but I’m not going to stress myself out. I’d rather weigh a few pounds more than I’d like and be healthy when I go sailing than lose a lot and be weak and sick when I’m away. This could very well be a once in a lifetime experience afterall and I am determined to enjoy it and make the most of it.

This morning I felt like I would never get back into the mindset I needed to and I won’t lie – today has been a battle against food and drink all day – but now I’ve made it through it feels as though tomorrow will be easier.

Or at least, I hope so.

If you have any tips, success stories, or words of encouragement for me I would really appreciate them!

>Chance Circumstances

>Picture post tomorrow, I have really cool plans for the day and I know that certain people who read this will scream at me if I don’t post pictures! I haven’t posted photos here in ages it seems… but then I haven’t been feeling myself for ages (three long, horrible, weeks) either.

Talking of things and three weeks.. my sailing trip is just over three weeks away. I can’t wait. I really really hope to experience some things I never have before and to just make the most of it as far as possible. Mum and I are spending the day in Swindon on Wednesday in the hopes of getting me some boots and over stuff for my trip.

No twitchyness so far today! Plenty of pain though… i’m gonna take a dose of co-codamol before bed.

I can’t stop thinking about the other people involved in the accident Soph was in yesterday and hoping that they learnt a lesson – the lesson they so obviously needed to – from that. I worry about the child and any other children if they haven’t. But for a few chance circumstances it could have been so much worse for all involved and they are all lucky it wasn’t.

I’ve been thinking about chance circumstances a lot today… I was really lucky when my powerchair messed up yesterday because usually I don’t have a manual chair in the room I was in when I’m powerchairing it. But my Kuschall had been to have it’s brakes worked on and I’d not got around to swopping back into it from my Quickie meaning that was in the lounge and my Quick was in my usual manual leaving place. Lucky because otherwise I’d have been stuck until my Mum could have got to me… I can walk but not as far as where I leave my manual – i mean, i can walk that far but not unaided.