Rowing with Micro$oft

Microsoft doesn't like my computer anymore. I've been fighting to get it online. Then I gave it to dad and he fought to get it online. So far there has been very limited success.

But good news - I'm at the library now! I've been having a short outing every few days and it's so cool to see that there's actually a world outside. It's autumn now and all the trees are all gold and you have to wear a coat when you go outside. There was even a flurry of snow yesterday. It seems remarkable - the last time I went out it was summer.

The Cold War at school has moved on. After I snapped at S on the phone she informed everyone that I was "really annoyed with everyone" and so I got a sudden windfall of emails from everyone apologising for the most random stuff - one of them apologised profusely for forgetting to ring me back - even though we'd spoken several times since then. Unfortunately I didn't get the emails as this was when I was still feeling rough. So they all fell out with each other because they didn't think the others were "standing by me" enough, as well as the general war between S and R, which has redoubled and they're now fighting over who has been the better friend to me while I have been ill.
I heard all this from an amused observer, and I have to say I find it rather hilarious. I'm sure I shouldn't, but it is kinda funny.

So I've spent the past few days phoning and emailing and texting everyone to reassure them that, indeed absolutely no offence was taken when they forgot to ring me back, or that I wasn't invited shopping (I really didn't even think about it - there was no way I could have gone anyway!), or that I was invited to a party even though it was evident I couldn't go because it might have been rubbing it in my face that I couldn't go (it wasn't).
They're ever so sweet really. Completely dopey and with absolutely no sense of perspective but basically well-intentioned.

I'm going to Big Hospital on Monday to see Consultant Lady. I'm not entirely sure what we're going to talk about, but I'm sure she has things to say otherwise she wouldn't have called us in.

Blogging may remain sporadic - I'll do so whenever I go to the library. I don't know if dad'll be able to fix my laptop and if he can't I don't know whether I'll be getting a new laptop in the near future or whether I'll have to wait until Christmas.

Speaking of Christmas - I heard the first Christmas song of year the other day on a DFS advert. The Countdown has officially begun. So I have been singing Troika fairly constantly - it's not bad luck to sing that one because it's not technically a Christmas song, but it feels Christmassy. Good old Lieutenant Kije.

Another short pause....

...I've had a cough, nothing to write home about, it's just tired me out and made me very miserable and grumpy, I'm afraid, far too miserable and grumpy to assemble a coherent post.

I've got in touch with the OU to ask for an extension, and they were lovely like the lovely people they are.

And I also have another project - it's my best friend C's 18th birthday in 2 weeks, and we've been friends for about 12 years now, so I want to get her something really really special.
So I'm making a scrap book, going through photos of us both at nursery (when we were deadly enemies) all the way to quite recent ones. And I'm dredging out of my memory all the stupid things we've done over the years, like buying £7 worth of chocolate and paying for it with pennies and tuppence's.
I haven't mentioned C at all in this blog - probably a good thing, most of the time I mention people I seem to bitch about them. I'm lucky to have a friend like her - in 12 years we've never had an argument (except for when we were 7 and I wanted to play one game and she wanted to play another so we declared "you're not my friend anymore", marched to the other side of the playground and sat with our backs to each other for the rest of the playtime, when we both sheepishly went up to each other and said "will you be my friend again?").

I'm afraid that with my OU stuff is taking most of my energy, but I'll do my best to post properly again. My cough's going, so it should be alright now. It's quite funny, every time I get a cough or a cold or something mum panics because she thinks it's some new aspect of the disease coming out. I must have had a dozen colds and it's the same every time. Poor mum, she's ever so worried about me.

Grumpiness

I'm feeling very tired, and therefore very grumpy. Just a warning in case I get quite unpleasent.

Just as I was beginning to feel that my portrayal of S may have been a bit harsh, she rings me. At 12 o clock - Granted it was lunchtime and therefore most people are awake. But I was asleep, being ill and all that. She rang again. And again. More or less constantly until I climb out of bed feeling terrible to answer the phone in case it was mum and there was some sort of crisis.

I have no more than grunted down the phone before she starts bewailing the cruelty of the guys and there sheer unreasonableness and could I please speak to R.

I tell her to Fuck off, that some people have problems that go beyond the stupid bitchiness of schoolgirl politics, that if I'm not answering the phone it might have something to do with the fact that I'm ill with this disease which we still don't even know what it is, that she needs to grow up and get a fucking life if she thinks any of this fucking shite matters.

There was rather a lot of swearing.

I'm sure it's not what Cousin Helen would have done.

But Cousin Helen didn't have to deal with stupid bitches waking her up and therefore depriving her of the extra 3-4 hours of sleep that she desperately needs to feel halfway reasonable for the rest of the day and then going on at her about their oh-so-dreadful problems and bitching about her friends to her.

I told you I was grumpy tonight. I get very cranky when I'm tired.

Cold War at School

I had a phone call, not from one of the usuals but from someone who used to be a friend of mine for a while. Really she was a best friend of R so we came together that way. Let us call her S.

Me - "Well, hello old chum, long time no speaky."

S - Yeah, sorry, had a really difficult time recently.*

(Your protagonist raises her eyebrows slightly at this as she knows what S counts as a difficult time, but as she likes to give people the benefit of the doubt she proceeds to say;)
Me - Sorry to hear that, oh friend of my heart. Do tell what these trials are that you have been suffering through.**

S - It's the guys y'know.

(Your protagonist does indeed know the guys - this refers to the group of Me (formerly), R, S and about 6-7 miscellaneous males, the identity of whom changes depending upon current group dynamics. She agrees that she does indeed know the guys.)

S - They just really don't get me. I thought I'd ring you because y'know you always got me.

Me - Did I get you? Sounds like a disease. Reckon it's curable?

S - Well, they just seem to really hate me at the moment and I really don't know why.

Me - Do you not, dear pal? It cannot possibly be anything you've done.

S - Well, I wanted to get some distance from them during the summer, so I didn't ring them at all.

Me - or answer any of their calls, no doubt.

S - And now they just seem to hate me. You see, I wanted to get some (and this is where your dear protagonist began to snigger) higher profile friends, because the head is choosing prefects and I want to be in with a chance, but the head only notices the popular people (not true - the head only notices the people who do things other than just roll up at school in the morning and dash out afterwards). So I wanted to make some other friends so I could be Head Girl. Because y'know, the guys have no ambition.



S and R have been friends for about 6 years. S has stopped speaking to R for no apparent reason. Except there is a reason, coz S just told it to me. And now she wants me to explain it to R so that R realises the wisdom and grace of S's decision. Good, huh?

So there is a cold war at school now. I'm well out of that one.



*S's words are reprinted verbatim
** My words, not so much

Following Cousin Helen's advice

I expect everyone has noticed the new background. If you went on here at about 7.30 last night you will have seen it go through several changes until I found this which one, which I thought was rather fitting, n'est pas?

This is part of my following Cousin Helen's advice, from "What Katy Did". (I think this book is going to be my guide book for a little while, so you ought to get used to my quoting it) "Pretty things are no more "worldly" than ugly ones [...] and sickness is such a disagreeable thing in itself that, unless sick people take great pains, they soon grow to be eyesores to themselves and everybody around them. I don't think it's possible for an invalid to be too particular. And when one has the backache and the headache and the all-over-ache, there isn't much danger of growing vain because of a ruffle more or less on one's nightgown, or a bit of bright ribbon."

I fear I have allowed myself and my surroundings to become a bit of an eyesore. I often don't open the curtains because of the light, or open the window because of the noise, so my room's a bit dark and dank. And my room has always been very messy, now more than ever. I've often been going a few days without washing now, usually because it's too much energy. It's all rather unpleasant.

So I think I would do well to follow Cousin Helen's first words of wisdom.

Today, I put a bowl and a jug and soap and stuff on my table, so if there's a day when I don't have the energy to have a shower or stand at the sink for any time, I can at least wash my face - I don't know whether washing my hair would work with a bowl and jug, I ought to try it on a day when I can have a shower if it all fails. And from now on, if I have the energy to lift my laptop onto my bed, I have the energy to at least pass a brush through my hair.

Next is the mammoth task of making my room a little more pleasant. I don't think it's ever been tidy since I moved in. Still, baby steps - and I've promised myself that each time a surface is cleared (properly, so that everything that was on it has a home), I can buy myself something pretty for my room. Like this - a teeny little greenhouse (pink!) which fits on a window sill. I think it'd be nice to be able to do some gardening again - even if it is on a small scale.

And the best bit is, because I haven't bought any new clothes in I-can't-remember-how-long, I can have a rather big shop online. Cousin Helen told me to.


Genetics is going fine - I'm having a generally well time at the moment, so I've been able to do quite a bit on it. All is well with the world.

369 Days

So it was a year 4 days ago. I didn't even notice. But I've completely lost track of the days - I just happened to look at the calender, and it was late September.

It's been a funny year really - I'm not sure if I remember most of it. And the bits I do remember are just the same day played over and over again. I wake up at lunchtime, I watch the same tv programmes, I think the same thoughts, I read the same words, I have the same conversations. I'm stuck in Groundhog Day. But there's nothing new. Things happen outside my little world of my bedroom and the living room, and I might hear about them, but they're not real, not to me. They're stories of this mythical outside place which I used to be part of. The people who I used to be ready to die for are now just names to me. I know characters in books better than I know the people who I used to spend 8 hours a day with. I can't bring myself to care about them anymore - not really. I've stepped out of their world, and it seems so meaningless and pointless when I can see it from the outside. But I've stepped out of that world, without stepping into any other world to replace it. I'm living in limbo - what I spend my time doing is more meaningless and pointless than what they do.
And at the same time I'm so jealous of them. For it to matter who's fallen out with who, what the facilities at such-and-such university is like, who said what about who, for the most important thing to be choosing a university. Just to spend 4 years studying and then get a job, settle down with 2.4 kids, work 5 days a week until they're 65 and then settle down to retire.

I'm sick of what I'm doing at the moment, but the more I'm out of it, the less I want to rejoin that old loop.
I don't know what I do want though.

I wonder where I'll be this time next year. Will I still be ill? Will I be better or worse than I am now? It's been a year now, I suppose I should make my peace with the fact that I could be like this for a good few years.

And having done that, I need to stop living in limbo. I need to stop waiting to be better.

When I was younger I read a book called "What Katy did", and I remember wondering at sharing a name with Cousin Helen, when I was far more like the impetuous tomboy Katy. I'm sure I echoed Katy in that statement "It must be awful to be sick - Why if I had to stay in bed, I should die, I know I should."
Well, I'm sick, and I have to stay in bed a lot of the time, but I haven't died yet - and it doesn't seem the most appealing thing to do either. I suppose over the next year, I'll have to learn from my namesake. I don't think I'll ever be as good and kind as her and all that, and I don't think I especially want to be.
But I need to stop putting my life on hold.

I need to stop dreading Christmas because it won't be the same having Christmas while I'm ill.

I need to stop feeling jealous when my friends talk about university open days.

I need to stop counting down the hours before it's another day over.

I need to stop searching for reasons.

I need to stop planning what I'll do when "I'm better."

I need to stop expecting sympathy.

I need to stop getting angry when people don't seem to understand.

I need to stop living in limbo.

I need to start living again, whether it's with illness or without. I've written and thought enough times that I don't know how much more of this life I can take. That's because it's not a life - it's an existence, it's purgatory, it's surviving. And it's driving me slowly mad. I need to snap out of it and start a proper life. A real life.

And I start tomorrow. These are my New Year's Resolutions.

RIP Paul Newman

I don't know much about his work as an actor, and I might not recognise him if I saw him in a film, but he's done some good stuff.

Twenty years ago, he began the Hole in the Wall Gang, which the UK later then copied as the Over the Wall Gang.

The Over the Wall Gang runs camps for children whose lives have been interrupted by serious illness - both for the children and for their siblings. It's a chance for these kids to be reminded that they're special just because they are who they are, not because they or their brother/sister is sick. It's a break from hospitals and "sick stuff".

It's impossible to imagine how amazing a camp it is unless you have been. I went long ago as a sibling, and I've never forgot just how incredible it was. Everyone else there had a brother or sister who was seriously ill, so there was never that thing hanging over in conversations - the distance that you get, especially at that age. We all just understood, and with that out of the way, we could get on with having fun and just plain being kids. And it was the first time in a long while that we could do that.

And I can't talk about the Over the Wall Gang Camp without talking about the volunteers. We were in groups of 6, and in each group there were 6 volunteers. They were with us 24/7 and they were always there for us. They were such amazing people. I don't know if they'll ever quite know the difference they made. When you're a "sibling" - as you can imagine, you don't get much attention - everyone's time is taken up with your brother/sister, so naturally you can often come second in people's thoughts. It's something that's often not appreciated in these circumstances. So to have someone really amazing looking after you 24/7, to get all the care and attention you've been craving over the past while is just incredible.

And it's just so much fun! Every kid should have the chance just to have fun once in while.

When I'm better, I hope I can volunteer there.

Thank you to all the volunteers, and a special Thank You to Paul Newman, for starting and inspiring so many camps over the world. I wonder if you know just what a difference you've made in so many lives.

http://www.otw.org.uk/ - UK
http://www3.holeinthewallgang.org/ - US

OU stuff

I took a look at the paper for my Genetics course today, and managed to do the first out of 4 questions, so I suspect that I'll be alright finishing it before the deadline - it gives me one question a week, and that should be manageable. It's a good thing I chose a 10 point course.

And reading madsadgirl's last post reminded me that now I get to choose my next course! Somehow choosing a course at OU is so much more exciting than choosing A levels or anything like that. It's better than Christmas - there's so much to choose from, and you're not limited in what you choose.

I was thinking I should perhaps do a maths course, seeing as if/when I go back to school, I'll probably be doing maths and further maths (at least, that was what I was doing before), but somehow I can't get excited about maths any more. I think I'd probably take the Level 2 Pure Mathematics course, if I did take a maths course, because it says it does a lot of background to the A level syllabus, and as I was doing Further Maths, we'd finished the maths AS level, and had started the A2 course by the time I got ill. But that one doesn't start until January, so I have time to decide whether or not I want to do that.

The arts past and present looks fascinating - history, art history, philosophy, classical studies, history of science, religious studies, music and English all rolled into one. The only one of them I was planning to do at school was classical studies - I was doing Latin A level. But for some reason I'm finding this much more appealing than the Maths and Biology courses. I don't know, perhaps that shows that the mathematical/scientific route isn't right for me. I'd never really thought that before - my parents are both scientists, and my brother's a medic - I remember my brother telling me about photosynthesis when we on a car journey when I was 6, and if in my year 5 homework book, I've written about the differences between meiosis and mitosis - something that's only mentioned at GCSE and only done properly at A level.
It never occurred to me to wonder whether I enjoyed it...
Maths and Science is just something I do. I'm quite good at it. I always have been.

I guess the only way to find out is to try both the maths course and the arts one. I wonder what my parents would say if they thought I'd choose to do an arts course at university! I think it'd be completely beyond their comprehension...

Sorry for the long absence (again)...

...and thank you for the kind comments on my last post.


I'm much better now, I've had a bit of an unpleasant time recently, but hopefully things are on the way up.

The drugs don't work. I had a reaction to them.
A rather spectacular reaction even if I do say so myself - not that I was around for most of it. I was fine (for a given value of fine) for the first couple of weeks, and then it went a bit crazy.
I've never really been allergic to anything, so it came as a bit of a surprise. My mouth was all itchy and tingly a few minutes after I took the antibiotics, then all sorts started to happen. My throat began to feel as if it was swelling up and I felt very faint, and I was starting to find it difficult to breathe. Luckily the wonderful paramedics were there quite quickly apparently - I was unconscious at that point. Then there was some blurry stuff that I semi-remember - lights, movement, that sort of thing. Then I woke up in hospital. It's very disorientating to close your eyes in one place and then wake up in another.
But it didn't take too long before I felt much better - I stayed in hospital overnight, and have been feeling a bit icky for the past week or so, but I suspect that's sheer exhaustion.

Needless to say, I haven't been taking any antibiotics since then. I have an appointment with Mrs Consultant Doctor to see what to do now, whether I could take different antibiotics and all that. So that'll be nice.

But enough hospital stuff - my Open University course stuff has to be in by the end of October, and I'm so behind. I suspect they'd take my recent escapades as a reasonable excuse if it is late, but I'd rather get it finished. I wonder if there's a cut-off date by which I need to tell them if it's going to be late. I'll see how much I can get done tomorrow, and then I'll decide.

And touch wood, I'll be back to my blog again properly now!

Well, hello again

Had a couple of weeks away, the first not so bad, the second thoroughly miserable.

The first was at hospital, just a sort of observation visit type thing. Then I got some antibiotics.

Then I had the second week.

That better mean they're doing something. I've no idea whether they're working or not, but they're definitely doing something.
I don't want to take them anymore.

But I know I have to.
But I wish I didn't.