Wednesday, 9 May 2007

A Response To The Wordpress

Dear You

I want to write to you today, I cannot justify nor untangle my reasons why. I want it to be selfless and comforting to you, though I suspect it is only a means to comfort myself.

I read what you write, whenever you post it, and though I often phrase long passionate replies in my mind, I rarely write them. I don’t know why I do that either, which leads me to think that maybe today is simply the outpouring of all of those previous unwritten sentiments.

I love you and have since the first time we met, though it is something I strive to forget because it is so absurd, yet, every so often it flares like a bright flame cool and utterly precise and unquestionable in my mind and I miss your company as a friend even though I never truly had it.

All of this spores from what you wrote, leaks out from all the things you didn’t write. I hate it when you are fake, when you gloss over and edit out in order to please your public, in order to make it more palatable. It strikes me sometimes you are trying to be as inspirational as Emily who decorates everything with pink awe inspiring glitter. You are not her and you do not need to try. You are something darker and colder, depressed into a state of cutting weariness by the very fabric of what you are and it makes you one of the most beautiful creatures I have ever witnessed. It makes you more like me.

I dislike the strained metaphors, but take strength from the true ones. I admire the harsh honesty you inflict upon yourself the most. I suppose it is quite vulgar of me to take such solace from the observation of you torturing yourself with the ideals of who you want to be, but I conclude that I as do it to myself constantly it is equitable.

There seems to be something harsh about criticising your thoughts when they are so personal and yet so freely proffered, however you are an artist whose entire profession is constantly measured by people who know little, and like to think they know much, so in that fashion this all becomes quite fitting.

You wrote to me some time ago asking about my new life, I never responded because I didn’t know how to. I wanted to enthuse about knowledge and adventures however whenever I sat to compose all that came to me was the distinct sense that you wanted to hear how hard it all is so that you didn’t feel so alone, and like you were missing out on so much.

I have learnt a lot here, there are whole wild days where I can feel erudition flowing into me until ever border along the fabric of my being is overcome with an ecstatic saturation whereupon it is all I can do to hold myself together and not shatter with insurmountable glee!

There are other days when I spend long glittering hours staring out of high windows wondering exactly how far it really is to fall, and if perhaps it would be best to let my broken body shatter spectacularly upon the pavement with pools of viscous blood gathered around me like blooms, rather than continuing upon a path that is so utterly refuting of it’s end destination.

I like both equally.

Most days however possess no extremes in any direction, they just lull into a sustainable reality that glows with my love for Luke and that focuses upon little besides what time are lectures, what time is dinner, and have I completed the treatment chart that I have so ambitiously and judgementally laid upon my desk. I am surrounded by friends who love me and acquaintances who respect me. My life is probably more perfect than it has been for a considerably long time.

I am content but admittedly unsettled, the eternal pessimist, I am waiting for it to crash, I am waiting for my world to become like yours, and question languidly to what extent I am forcing it in that direction.

I feel like I am on hold, like this is just a process to become something else, and yet it is taking everything from me and at the end I may not actually be capable of dealing with the responsibility of what I have become. Yet I love it, more than anything else I have ever done and feel like my whole life has been a sole-minded journey to the point I am at now. Incongruously that makes me feel incredibly set and determined, I have found my purpose and a clear set ideal of what I am to become and the path I must walk to attain it, somehow that makes the walking all the easier.

I want to ask you not to give up hope, I want to ask you not to let your inspirational writing sink into a method of counting down to an end you don’t believe you will reach – however it seems crass and unfair, hold your hope where you feel it truly belongs, and let your writing continue to document your tenuious life with the cutting brutality I have come to love.

Smile through it darling, for me it you are succeeding in your aspiration to make sense of it all.

My Eternal Love and Respect


Tuesday, 1 May 2007


I woke up early on the Saturday morning as I had to finish both pieces of PPD (personal professional development) coursework, aswell as a clinic observation report. I wanted to get it all done and submitted before I flew out to Paris just incase there was a problem getting back.

I actually progressed quite speedily and got the PPD done by lunchtime, leaving me the afternoon to get the clinic-ob done. This took me a little longer than planned, mostly due to the eternal nightmare of trying to get a table to format properly in Word.

It was then a case of packing and having the obligatory 'oh shit where's my passport' moment, the whole time worrying that I was going to be late for dinner at my parents. Eventally we left the house at about 7, and made our way over to New Cavendish only to find the damm campus was closed and so I couldn't hand it in anyway!

We then walked up to Warren St., overcome with the skippy joy of steroids, and because we were running late I even ran to catch the bus!! The train ride on from there was pretty long and boring, though I did read a leaflet about a campaign to encourage fair wages and better working environments for those connected to the tourism industry in 3rd world countries. Luke pointed out though that the base of the campagin, which centred on adhereing to international law, was invalid because most of the countries involved weren't signed up to it. However I still feel the sentiment stands.

We then had a short wait in the very cold air (so used to the big warm city!) before dmama arrived with Shellie my sister, and her friend Simon. I was expecting us to rush home for fajitas but instead Shellie had decided that she wanted to show Simon around where we grew up, so we had a slightly mad drive around in the dark to look at our old primary school, and the place where Shellie was Christened as we narrated lots of silly stories.

When we got home Alex was cooking the dinner. He looks so tall and so grown up now, and when he cuddles me I can feel that he's finally turning into an adolescent, I can feel the potential of what he's going to be as an adult, as a man. I am immensely proud of him, for all his many flaws he is growing into a truly awesome person I'm proud to call my brother.

Dinner was a quite jovial affair, we were all in high flirtatious spirits and feeling like true Crosslands. Simon of course fitted into it all effortlessly just like in Gibralta. Luke was quiet, and I fussed and worried to make sure he was ok, which probably just made it worse, I should know by now he is always quiet, it's just sometimes I notice the contrast more. I want him to feel at home amoungst us, as much as I feel at home at Greatham.

After dinner Luke and Alex and I watched Doom for a little while, but I got a bit scared, and Luke didn't want me to have nightmares so he carried me out of the room! SO cute! Then I realised how late it was, and that I was actually pretty tired and cold, so I made my way haistily to bed.

Mummy had meant for us to sleep in the caravan, but in a repeat of new years no one had switched the heating on. So I decided to screw that and went up to my bedroom, and emptied my bed of all the random crap that has been dumped in there... which, for reasons quite beyond me... consisted of paperwork, knickers and many dog biscuits!!

Luke followed me up, and we got into bed. There was something special about having him there, and we talked for a while about nothing at all, it was one of the most comfortable moments of my life.

We then realsied we really ought to stop talking and sleep as we were having to get up at aboout 5am!

Note - I never wrote any more on this post, and I don't intend to, the weekend in Paris was awful for reasons I never could put my finger on. Marillion were fabulous of course, but the crazy moustached man who spent the entire gig elbowing Luke so hard he left bruises should be shot.

Monday, 23 April 2007

Sunshine And Anime

GoAs Will was up in London we decided it would be cool to try and visit an anime shop as he's really interested in it, and they are the kind of specialist things you only tend to get in big cities. I also wanted to change my i-pod case as it didn't fit, and get the new Porcupine Tree album. So I hatched a shopping route, asked my other anime friend where the best shops were and dragged the techie boys out into the sparkly sunshine!

We got the bus to Warren Street, and began walking down to Fopp, my steroids had kicked in so I was feeling highly energetic and capable! About half way down Tottenham Court Road and before we got to the record store (which also has anime books in the basement!) we stopped at a Japanese restaurant to be in keeping with the theme of the afternoon. Luke and I had cooked dishes, and Will had sushi which looked on reflection to be an awful lot nicer than ours, though Luke and I were in agreement that ours had probably been nice a few days before when it hadn't been re-heated umpteen times.

It was pretty cool just to be sat out in the sunshine on a London street eating Japanese, it was hard to tell with Will as he's quiet, but I think it would be fair to say that both Luke and I felt pretty cosmopolitan and cool in that moment. Every so often it hits me just how awesome my life is, and that I'm living in one of the most fantastic cities in the world doing something I love, it really cannot be beaten.

We then carried on our way, and I made a b-line for the Porcupine Tree album the second I was in Fopp. We then went downstairs and I went to the till while the boys looked at the books and DVDs.

Further on up the road to the shop I got my i-pod case in. Very embarrassingly the thing had two different sized backs in the box, I just hadn't seen the second, and so it did actually fit after all! The boys had gone to Muji next door as it's one of Luke's favourite shops 'just too look in', so I went in to join them, but couldn't find them, so came back out again to find them hanging about looking dodgy on the streetz!

Onwards to Forbidden Planet, which we had discovered was the best place to go to for anime. I had very briefly looked at a map of where it was so that we knew where to head, but I then got confused as to which road it was exactly that we were supposed to take off from centre point. However given a little pootling we did find our way at which point I felt highly smug and proud of myself and all my genius navigation skills!

We spent a good long while in there ogling all the weird nerdy things. There was lots of debating as to whether we could afford the £200 for the entire of Babylon Five on DVD, or maybe the same again for all of the X-Files eventually settling on Firefly for under £20, however should Joss Weedon ever decide that he wants to make enough to fill a £200 box set I promise on my life I WILL buy it!!

Then very weirdly just as we were about to wander off and look at the comics this chap walked past, and I thought 'ooo I know him'. So I did that think of trying to look at him more, whilst not giving away the fact I was staring at him just in case it turned out I didn't know him, but hurrah I was indeed correct and it was my very darling old chum from college, Peter. So abandoning Will and Luke momentarily I minced over and gave him a truly massive cuddle!

I don't see him very often even though I talk to him all the time on MSN as we are both just a bit disorganised and shit hehe, so it was fantastic to get the opportunity to say hi face to face for the first time in about a year, and have a bit of a natter.

I then realised I really had actually lost Luke and Will and that I really ought to find them, as innocent young females must be careful not to dance about unaccompanied in a short skirt round what is effectively an over-sized comic book store for long periods of is just asking for trouble!

I did indeed find my boys over by the X-men comics. We carried on mooching about, and bumped into Pete a few times. Though it was kind of odd I introduced Pete to Luke, as I figured it would be nice for them to know who I was talking about, and talking to all the time. Not sure how we got onto it but I think it was via some unfair slating of Titan A.E, but Pete told us we really should go and see Sunshine as it is very pretty, and quite good.

We then headed up to the till, and then made our way out and back towards Oxford Street, whilst doing that thing of comparing what each of us had bought. We had Firefly obviously, and Will had, surprisingly enough, got anime stuff.

We pootled into Virgin for a bit so the boys could have a look at games. I actually lost them again for a while as I got distracted by the band that were playing live in the basement, as they were pretty good, but I couldn't work out if I knew them or not. I re-found them up by the games, debating which one to get, then we headed out before we bought too much. At the door there was a sign saying that the band was Ash, which made it all suddenly make sense!

I then had to go as I was supposed to be going over to Oxford to get my bag off of Bryan, as in the mad pain-filled dash back to London a few days ago I hadn't brought it with me. I made my way down to Marble Arch to get the tube out to Oxford, but had to nip into John Lewis to do a pee, while I was there Bry called to say he was going to be working till about 8 or 9 probably later, and so that I couldn't really come that night unless I wanted to stay, which I didn't as it would have meant being away from Luke. There was a very pretty top in the shop but sadly it was about £200, I really have no idea how anyone could spend that much on something simple!

Kind of pleased that I didn't have to trek to Oxford, as I was now feeling pretty tired I headed back to home via Ann Summers who had a fantastic sale on, just perfect for cheering up poor sickly boys dying of nast evil puffy hayfever :o)

I called the boys and asked if they wanted me to pick up dinner, I nearly didn't as I just wanted to walk in and cuddle Luke and surprise him that I was still here, but I was also hungry and knew I wouldn't want to leave the house again once I'd got in. So Pizza Hut it was, where I ignored the request for just pizza and got extra garlic bread!

We then sat about eating, while Luke played on the game he'd bought. Will assembled his anime figure that he'd bought and it was pretty cool. He then joined Luke on the game.

Noting that this was the last I was going to get out of either of them for the rest of the night, and given I was quite shattered having walked so far I retired to bed.

Sunday, 22 April 2007

Chinese Karaeoke

It was Sir Vince's 19th birthday on Wednesday, so to celebrate he had arranged a karaoke party to which we were all invited, however I can't help feeling this all got a little over-shadowed by the fact Rabia wore a dress!!

We all got the bus over to China town and to this restaurant thing then up about a million flights of stairs to a little room that looked like a private-back-room in a strip club only with two large LDC screens set in the walls. A friend of Vince's called Fong was sharing the party as it was her birthday too, she was already there, as were some of Vince's Chinese friends who we don't really know.

It would be fair to say by this point I was feeling out of my depth and rather culture-shocked, however still quite determined to have a dam good time and celebrate properly!

As the evening went on everyone relaxed a little more, and did some singing. Finally it appears I have found a use for my ability to remember the words to all Girls Aloud tracks despite having only heard them a few times! However I think everyone was a little mortified i knew them, and Luke may have considered having to leave me out of principle haha!

We had food brought to us while we were there and it was pretty nice, though when it came to cake Ricky decided to eat it off of the plate as he didn't have a fork. The urge to squish it in his face was immense as it was typical Chinese cake with lots of cream and very soft sponge hehehe!!

All in all it was pretty good fun, though I think it would have been better if it had just been people I knew because then we could have been more silly and we wouldn't have been too shy to do over-dramatic duets and bad dancing!

The Chinese pop songs that we couldn't understand, and that all sounded the same were also kind of hard to get past hehe!

We then walked down to Leicester Square and had HagenDaz which was highly yummy. Julie thought the waiter was cute, so we were all teasing her, even though we quickly decided that he was probably gay, given how much he minced!

We then waited outside as Vince had nipped back to the karaoke place to pay the bill, and got accosted by all the guys from all the clubs trying to convince us to go in, offering rubbish deals that were mostly just for us girls.

They came back, but by this time Julie was feeling really poorly, my tummy was starting to hurt and Rabia and Aarron had, had enough. So we left Luke, Saied, Vince and Karolina to go clubbing without us, and got a taxi home as it was cold!

I intended to go to sleep, but ended up chatting on msn and was still awake when Luke came home, so I got to cuddle up and go to sleep in his arms which was lovely, and somthing I really needed after the craziness of the past few days.

I had no voice left, the singing was bad, the ice-cream was party...happy birthday Vince!!

Saturday, 21 April 2007

Long Weekend

I had been really looking forward to this weekend as it had been planned for about six months. I was supposed to be role-playing with my old friends in Oxford in a game that we have all been part of for years real-time, but then things never quite go to plan do they?

It all began to go a bit pear shaped at around 9am Friday when Bryan called to tell me that Jero had mis-booked his weekend off work and so wasn't going to be able to come. I was a little sceptical about whether this had actually happened or whether he just wanted to spend his weekend off doing something else, but then it is Jero and he is hopeless so it's quite possible, and either way it didn't matter too much as we decided we'd just play without him.

I don't really know where that morning went, I mostly faffed about my room taking extensive amounts of time to get off the Internet whilst scoffing mixed nuts and dried fruit, I then admitted it really was time to get going and that I was probably going to be late for clinic!!

I was of course, I always am, but it was fine, they were so busy it was all running late anyway.

Dietitian review went ok though I'm down to 50kg again, I tried to explain that I had been rather put off doing my feed at night as I had woken up to find the tube strangling Luke, we had a bit of a laugh about that, and then decided that perhaps it would be better to do my feed in the evening or day when I'm just sat about the flat so that it interferes less.

Physio review was ok, nothing to change.Lung function measuring a stunning 40% I try not to find that too depressing but it's hard, I want it to be alot more, even just above 50% would be a nice threshold not to fall below. Surprisingly though my oxygen levels were 96% I was quite proud of that.

Saw the doctor, a lovely chap called Nick who I did some research for once that involved having electrodes up my nose...lovely! In a bid to avoid intravenous antibiotics (IV's) and after some extensive debating about what to do given resistances and the amount of drugs I've already had this year, we decided to plum for a course of a new antibiotic for me, Doxycycline, and a tasty 10mg of Prednisolone to try and calm my asthma down as it's pretty out of control.

Then it was a case of hanging about for bloods, pharmacy and to get my port-a-cath flushed, then off home.

I got the bus and went via Tottenham Court Road to get a case for my i-pod as it was sort of on the way, and it's been annoying me that I don't have one. I also had to get some new headphones as my last ones got ripped out of my ears and broken by some silly woman last weekend in Victoria train station.

By the time I got home and packed it was getting pretty late, and I was pretty tired. Just silly things like having to go around the corner to go to the cash-point seemed unfairly hard my tummy was also starting to hurt.

I did however make it across the stupid underground network of subways that is Marble Arch, and got on the 'tube' out to Oxford.Bryan, Nick and Ailsa all came to pick me up together, and we headed down into Oxford proper to get food, which as any role-player will know is probably the most crucial aspect of any role-play weekend!

By this point my tummy was hurting a hell of a lot, and my lungs were feeling pretty dreadful too, and all I wanted to do was curl up in a heap and cry, not wanting to make a fuss however I just hung quietly on the trolley and shoved things in, in a state of auto-pilot.

I was also feeling a little odd, as it's been ages since I've been around them all, and they were all talking about RPG and games they were playing, and it all just felt a bit alien to me and I felt a bit left out.

When we got home we had a bit of a debate as to what game to play. I studiously, as ever, ignored Bryan and Nick singing the song they wrote during the game that I ran (Willis and Gratch) as I hate running it takes far too much effort and means I have to stay awake. We debated running Magnor without Jero, but all agreed that it would be pointless without him, plus we'd all die really fast as he's our healer. In the end we settled on Nick running his Pern campaign for us, even though it meant we had to roll up new characters.

Ailsa decided to be a dragon rider and has a gold dragon, Bryan I actually have no idea as I got rather more distracted by his naughty greedy pet fire-lizard who was a much more vocal character. I went for a straight forward fighter, quite quiet natured and serious with a big huge hammer for squishing things!

I joined in for a bit, and then my tummy got so bad I had to go an lay down for a bit, and I did intend to go to sleep as that is often a good way of ignoring being in pain. However it just got worse, and I was on the verge of calling an ambulance, when suddenly it lessened off.

I went downstairs again and played a little longer, before finally having to go back to bed to sleep.

The next morning I woke up hoping that it would all be ok, but sadly it was hurting again and I realised I was going to have to go back to London to get some drugs to try and sort it out. I managed to stick it out for the morning and most of the afternoon, but then when we broke off playing to have a barbecue I decided that it was best I head up to London then so I didn't miss any, and I would try and get back as quickly as possible.

The tube ride back to London was very long and very painful. I'm, sure the other passengers must have thought I was having a baby or something given the grimaces I must have been pulling whilst clutching my tummy. When I finally got to London I got a taxi back from Marble Arch, marvelling briefly at the queues outside the newly opened Primark as we drove past.

When I got in I immediately shoved everything I could think would help down my tube, as well as taking as many painkillers as it was safe too in the hope it would work. I had the intention of letting the drugs kick in before heading back to Oxford, but it quickly became apparent that things were not getting better, and that as my body had been straining and in pain for the best part of 24 hours it was now pretty much exhausted.

Everything then seemed to spiral quite quickly.

I called one of my flatmates to see if she was in, as she knows how bad my tummy can hurt, but she was going out, so I didn't want to make a big fuss as I was still convincing myself at this point it was going to be ok.

I called Luke to let him know what was going on as he was down in Sussex, I told him it was probably all going to be fine.

It then hit me this really wasn't going to be fine at all, and that I needed an ambulance, and probably a surgeon and that I really should have admitted that quite some time ago.

I called the university as we aren't supposed to call an ambulance without asking, which seems very bizarre to me, and they weren't very helpful and didn't offer to send a first-aider which I thought was a bit shit, not that they could have done anything but that isn't really the point. I then called the ambulance and they told me they were on their way.

I then called Alex another one of my flatmates as he's quite sensible and I knew it wouldn't freak him out too much to suddenly be faced with me screaming in pain and getting bundled into an ambulance and having to face surgeons...which is what was going to clearly happen. I asked him if he was in and he wasn't, he asked why and I was going to say 'oh nothing' because I didn't want him to worry as he wasn't here. but I just kinda of cracked at that point and told him what was going on. He was, as I predicted, terribly sensible about it, and told me to call Rabia who was in, and that he would meet me at the hospital.

Rabia and Karolina came rushing down and did their best to look after me as we waited for the ambulance which in the end took nearly an hour to reach me in central London. I probably got over-worked up and made myself worse but by that point I was tired and scared and in a lot of pain and they should not have taken so bloody long to get there. I also got beyond the point of being able to talk to Luke because I was in too much pain, so Karolina had to speak to him and let him know what was going on. I felt awful for scaring him so much, but it was reassuring to know that no matter how long it took he was on his way.

The ambulance crew when they arrived were lovely, and apologised for taking so long. It was odd but I suppose understandable that I calmed down when they got here. I seem to have this mode of being helpful, cheerful and highly knowledgeable about my condition around medical staff that kicks in almost without fail, and the less they know about me the more I behave like that. It is probably a little mis-leading as to how I am actually feeling but never mind it seems to work.

They rushed me down to UCH and into A&E where they did their best to pull strings for me and get me into a bed rather than a corridor, aswell as getting a surgeon down to see me as quickly as possible. While we were still waiting Alex arrived. I felt a bit bad as he and Rabia have had a rather bad 'falling-out' and I didn't like being responsible for shoving them back in a room together, but figured they were both grown-up enough to deal with it. I also got Rabia to phone Bryan and tell him what was going on and that I wouldn't be back, very sweetly he told her that if they needed to speak to someone who knew my medical history that they could call him.

It was then a case of being put in a room, given an utterly pointless dose of paracetamol, and re-counting the freaking bloody obvious about three hundred times to various nurses, doctors and surgeons none of which had a clue what was really wrong with me or how to deal with it, even though I kept telling them!

The guys were all utterly fantastic and kept me talking so I didn't notice how much it was hurting, and so I didn't have time to brood over the possibility that I was going to need surgery which would probably kill me.

After a few hours of faffing about with nothing being done they finally decided it might be a good idea to give me some pain-killers and anti-sickness drugs, however it did involve the nurse having to throw away one batch of drugs that I'd already told them I was allergic to!

Everything after that goes rather soft focused and I don't really remember it as the drugs were pretty strong. I did tell them that I'd stop breathing enough when they gave it to me, yet still there seemed to be some surprise over that fact that my oxygen levels plummeted, blissfully though I didn't actually care about any of it any more as I was away with the fairies.

A few hours later I semi-came round and the surgeon asked me all the same questions again, even though most of the answers were written on a sheet for him that I prepared ages ago so that I didn't have to go through complex medical history whilst off my head on opiates, but never mind. Luke was in the building now anyway I could feel him.

It was no surprise at all when he appeared at the end of my bed, though it was very nice to see him again.He was glowing of course.

Then I was on the ward, and being sick, actually properly sick out of my stomach which I haven't done for a very long time, so that was quite exciting. Luke was sleeping next to me in the chair. When I stopped being sick he went home, but I kept waking up and seeing his echo there for hours afterwards.

Just as dawn was starting to break another doctor came to see me, she was worried about my chest and wanted to put me on IV's. I explained that wouldn't be necessary, but suggested she should call the Brompton anyway and ask what my sensitivities were. I also suggested that she ask how they would recommend dealing with a blockage. She ignored the latter of course, but happily announced I was sensitive to colomycin, which I could have told her anyway.

The next day Luke came with is friend Will, who had come to keep him calm on the mad train journey the night before. I didn't really have much to say, and was still feeling pretty trashy from the drugs, and like I'd been kicked a few times in the stomach.

Later I got moved into a side room which was nice and big and quiet. It was also nice to see they were being sensible about me and the 'infection risk' I pose!

All the gang came to see me, they were all a little shy at first and didn't seem to know what to say, but after a while it was ok, and we chatted normally.

That evening I watched 'Lost in Translation' it was pretty good, and I've wanted to see it for some time. It made me a little sad though, partly because Japan looks so cool and weird and I want to go there, and this latest episode was just more damming proof that I just can't do that sort of thing any more. More though because of the subject matter, it made me think of my sister and her friend a lot. Two people coming together and then never being able to follow it all through because it's just not possible because of all the other circumstances - it is a horribly sad thing to live or to watch.

I then watched 'A Clockwork Orange' because it's one of those films I felt I really ought to have seen, besides which I wasn't really sleepy and it was the only thing on. On reflection it probably wasn't the greatest film to be watching late at night whilst in an odd mood with lots of opiates and steroids in my system, but never and violence always makes me think of Nick and having been convinced I was about to die again the night before it was kind of obvious that I would be thinking about him anyway, it made me text him though which was a good things as I probably should have done earlier.

After that I went to sleep.

The next morning I woke up to find my tube had disconnected in the night, so that the contents of my stomach had free-drained onto the bed, rather than into the bag, not very pleasant at all as it mostly consisted of cold wet sputum. In a very unimpressed and quite feral state I had retreated to the back corner of the room to watch the last of the sunrise and debate at what point I should sign myself out. The fact the surgeon couldn't be bothered to come in the room as it would have involved putting on a plastic apron did very little to improve my mood, though I was at least now allowed to drink...tea please!

As the day progressed I brightened up a little and by the time my flatmate Chitzi came to see me I was feeling decidedly perky. She stayed for ages and we chatted about tons of stuff so that was really nice.

In the afternoon Luke, Will and Abdul popped in. They very sweetly bought me some magazines to keep me occupied. They had been trying to fix Will's laptop and though they hadn't had much success it appeared they'd had fun trying!

That night was pretty long and awful. For some reason I suddenly started feeling very cold and shaky, given the IV fluids and my history I immediately assumed there was something wrong either with my blood pressure or my sugar levels, the latter being quite concerning as I was not in the mood to fall into some sort of hypo-glycemic coma through sheer stupidity.

I called the nurse and asked if she could do a set of ob's and get me a blanket, she said ok, and went off. I sat waiting quickly getting more cold and shakey whilst also starting to feel very sick, to the point I started retching. I called for the nurse again, getting quite concerned at this point that there was something really wrong. About fifteen minutes had gone by at this point, and I could hear them outside chatting at the nurses station, which really annoyed me as i was quite concerned. I was also frustrated that no one had been keeping much of an eye on my sugar levels even though I had repeatedly asked them too, and they had already dropped low on one occasion in the last 24 hours.

She eventually came back in to find me retching and shaking with cold, and rather than being 'oh my god what's wrong, let's do some obs' she started shouting at me saying 'why are you hyperventilating' to which I tried to explain I wasn't whilst shivering, retching, and being quite worried, and that I was jut really cold and could she please do my ob's because I was worried about my sugars and bp.

She then started shouting at me to get under the blankets and that was why I was cold, I was trying to but it was kind of hard whilst shaking, puking and being shouted at, whilst also trying to explain that I doubted I would suddenly get cold for no reason and that I thought there was something really wrong. She then started going that I knew I had to keep myself warm and that it was part of my condition, to which I was thinking 'It's got nothing to do with my condition' and 'you don't know the first thing about my condition'.

I am also notoriously bad at being told off, and it really upsets me, especially when I try so hard to be especially helpful and patient when I'm around people who don't know how to look after me. For instance even though the ambulance crew took an hour to reach me I never complained to them once. But she just kept shouting and I didn't know what to do, so in the end giving up on being polite I was just like 'what the fuck, why are you shouting at me?' to which she shouted back even louder 'do you talk to me like that' in a way that implied I'd called her a bad name or something. Eventually thankfully she left and a few minutes later another nurse came in and did my ob's.

I couldn't even look at her, I just sat there crying my eyes out.

I was so upset, and so so shocked, i just couldn't understand why she was shouting at me when I hadn't done anything wrong and was just asking for help.

I called Luke because I didn't know what else to do and I wanted to hear his voice to calm me down. He was really sweet and wanted to come down, even though it was too late at night and they wouldn't have let him in. Mostly though i just felt bad for calling him when there was nothing he could do for the second time in as many days, so it didn't actually help that much.

I sat there for a long time debating whether to just sign myself out as they didn't actually have a fucking clue what they were doing anyway, and they weren't giving me the drugs I wanted because they don't understand how CF-related intestine blockages work, yet refuse to listen to my perfectly competent explanation of them, and how to deal with them.

I also did not want to be in the same building as that nurse, or in a place that would have staff that would treat their vulnerable patients in that fashion.

However I just kept saying to myself 'reflect' in true PPD fashion. I was trying to figure out why I was reacting so strongly and what the best course of action would actually be, irrelevant of what I felt like doing. I had to bear in mind that this hospital, are when I'm going to come in emergencies irrelevant of whether they know what to do or not, ambulances cannot go to the Brompton, so it would probably be best not alienate them and piss them all off. Storming out of hospital at eleven o'clock at night just because you had a row with an unprofessional nurse is also just a bit immature. I also had to admit that I was probably over-reacting because I was over-tired and it had been too many days of pain and scariness.

However I didn't really feel any better for having come to such an enlightened point of view and so I called my friend Dan, who is the only real world person I know with CF. He is also probably the only person I can call at midnight in tears crying about CF and have them have a hope of understanding what I mean. I always do it, and he always there. Truly awesome friend, I love him very much.

I guess this was just the first time I've really had this acute scary situation happen now I'm totally independent. The first time it happened I was with Bryan, the second I was with my mum, but this time I had to make all the decisions, and there wasn't really anyone around who knew how to help. Thats a very scary level of responsibility that it could only hit me I now have in that sort of moment.

I really don't know how I do this sometimes, and I have to pretend I can so that everyone else doesn't worry too much. I wish I didn't crack under all the strain but every so often I do. That was utterly one of those moments.

Kind of hurtful and upsetting that the people I want then aren't the ones close to me like Luke, who it feels like it should be, but I want other people who are further away, who I'm less scared of hurting.

The next day I decided I was leaving, and convinced the surgeon with very little difficulty that he had no idea what he was doing and that it was best to let me tootle off the the Brompton in such a fashion that he was convinced he came up with the idea. I also got to eat something which was a relief after days of nothing.

I called Luke to ask him to help me come home as I had a heavy bag, and I didn't think the hospital would let me go unless it was with someone. He arrived in a vile mood, still mostly asleep and puffed up to the eye-balls with hay-fever and I got the distinct impression I'd annoyed him. Then I had strict words with myself to be more grateful and to just be relieved to be going home.

Yay - survived it all again.

Ignore the bright edges, busy roads and high buildings.

Wednesday, 18 April 2007

Somewhere Else

So this is my album review, and as you can to some degree expect it is not really a music review at all, it is a review of how this album made me feel, and what it made me think of, and for that reason alone it is horribly long winded, never really gets to the point, but yet remains an important exploration of how I feel about me, and my life how it is right now, with alot of referencing to what has come before with the odd mention of obsessive Marillion love along the way...enjoy!!

The new Marillion album 'Somewhere Else' was released at the start of this month. It may sound rather odd, just some band and a new album, kind of exciting, but not earth-shattering.

Then again it is Marillion, and after thirteen years of following them around the world they have become a bit more to me than just a band, and the new album release more than just a good excuse to go down into town. (Not that you can really ever buy their album down at HMV, but you get the drift)

With sometimes years between albums, whenever one comes out it is rather momentous, as I know, that no matter what, it will inevitably become part of the fabric of the rest of my life, and I will never quite look at things the same way again.

I had expected the album to be different. Last year when I first left my husband Bryan, I had this whole massive 'hurrah I'm free look at the sparkly world' type high, and I knew that to some extent the lead singer h was going through a similar thing, I was really looking forward to the album sound-tracking my new life, in the same way all the other albums have.

The the day I got the album I had been at my sisters, and her friend who she lives with put it on my i-pod for me. My beautiful sister is very unhappy at the moment, for reasons I won't go into here, but I really understood how she felt to a large extent. It reminded me of things I try and forget about Bryan and all the very real love connected to him.

....anyway I listened to the album on the train, which was not the greatest place as there was alot of surrounding noise but my initial reaction was one of horror.

All the songs sounded really samey, alot of them were messy, the vocals were terrible and the lyrics repetitive and shit. I think my precise description at the time was 'It sounds like a bad Radiohead album, after the highs of Ok Computer when they just descended into whining over noise so over-experimental it couldn't be called music'

However I did not utterly despair, as I often hate the new Marillion album, and usually have to listen to it some number of times before I 'get it'. I don't know what that says about them as a band, that I have to 'brainwash' myself into loving something, or that their music is just complex and takes time to understand...being utterly biased I shall of course plumb for the latter explanation.

Determined to 'brainwash' myself, and give the album a fair chance I listened to it again later that night as I did my physio, on headphones in a quiet dark room - there are really two ideal places to hear Marillion, this being one, the other being in the front row of their gigs whilst jumping and singing my heart out!

As I sat there listening carefully to the words and all the many intricate layers of sound, along with all the memories of the day in my mind, along with all the other older memories I had thought of, along with on-running concerns I have about my head and heart and the way the work the whole point of the album hit me, and it was all I could do to not cry.

I try endlessly to explain Marillion and why I am so obsessive about them, and yet I constantly fail to articulate it all and just sound like a crazy loon!

This band is about more than music, it's about more than countless adventures around the world and all the friends from the front row so precious they are like family, this music sounds like how I feel, really deep down inside my heart, and inside my soul.

It manages to encompass so many tangled threads of memory and emotion, and draw them together into a single coherent whole, giving a richness and level of depth and colour that I just can't seem to come up with on my own in my head.
It doesn't solve anything I suppose but just the recognition that it's there and that's how I feel somehow makes it all easier to deal with.

I shall deal with what I see to be the two threads of the album separately...

Firstly - We Should ALL be good and save the planet!

This is something I know the band, particularly h, are passionate about and was expecting some sort of statement about it all. The fact they are all pretty much in their fifties and looking at the legacy they are leaving to their children in terms of the planet must be something that is on their minds to some degree.

This also couples with the general media shift at the moment, I don't watch much TV or read the newspapers either, but yet I have noticed of late there has been a significant push to change the world and start making some actual changes to the way we do stuff, to make our societies more sustainable.

I am under few positive illusions as to why this is. It looks good for business and political parties and for the most part I have little hope that it will last or that the 'changes' being made are little more than lip-service to the true depth of the problem, however I would rather this than nothing.

The constant tangle of despair of what we have done to the world, and how we are going to fix it, and all the falseness surrounding the issue, is, I feel, captured. Marillion know they have a large and utterly adoring fan-base, I can very easily see how they feel it is important to use that power of voice to try and achieve something more constructive than getting their album in the top 10 and for that I have the deepest respect for them.

It may have all been said before, it may be cheesy, but SO what??!! Good on them for standing up and saying it anyway, because it needs to be said.

I think the best quote on the matter from the album would have to be 'Give me a smile, hold out your hand, I don't want your money, I don't want your land. I want you to wake up and do something strange, I want you to wake up and feel someone else's pain'

What an utterly fantastic an idea, should be the band aid theme-tune!!

Secondly - How the hell you get over a marriage and it's collapse.

It is important to note at the start the way the two themes intertwine, as they both involve a lot of looking at the world, and the state of it, in horror. Looking at the macro-cosom and the micro-cosom I guess.

I am probably being terribly naive, and doing the typical 'no one else could possibly be hurting as much as me' type reaction, but I do genuinely think that getting over a marriage is a very hard thing to do.

To a very large extent I'm fine, and that it is probably easier for me than for Bryan as I was the one who chose to leave. I don't want him back, and I'm not angry at him. I'm probably one of the most unusual ex-partners ever in that I still love him and care about him very much, and I want nothing more than for him to be utterly happy in everything he does, and would love to see him with some new girlie who made him really happy.

However all that said there is a part of me that will always feel sad about the fact it didn't work out. Though I'm happier now, though I know that it was not going to work and that we were just destroying each other, there was ALOT of love there. I did NOT take my marriage vows lightly, and I broke them even less lightly. I swore to something, and I bound my entire being to that with white gold and love, and yet when it came to it I couldn't hold to it. Forever I will be disappointed in myself for that utter failure of myself.

Not long after I left Bryan I wrote him a letter. I wrote it with the intent that I would keep in a box for a month, and then if I still felt the same I would send it to him. I never actually did as it seemed like a bad idea as it would probably have just upset him, and it seemed like something that would ease my own conscious more than it would do anything for him. But in there I said that I doubted I would ever love anyone again, or words to that effect.

I often do this, I write things, and then it's only in retrospect I realise quite how true they actually are.

A big part of being able to leave Bryan, and get over it all hinged on me being a single entity and the strength I found in being on my own. I didn't actually want a boyfriend, in alot of ways I am still not convinced I'm at the point where I do want one, despite actually having one, and not wanting to be without him, if that makes any sense at all!

It is very difficult.

I'm not a pretentious person who likes to have barriers and walls and not get over things, or not let people in. I am hopelessly naive and childish and I believe in poetic love, and think that people should love, and that you should never deny that.

I firmly believe you should retain innocence and not get jaded by the bad things that happen, and that you should still uphold the original pure ideal you had when you were little, long before you hit the real world.

But now I'm here, now I'm living it, it is harder said than done, and that letter comes back to haunt me.

I cannot describe how it felt to marry another person adequately enough to then cover what it means to have broken that. I stood in that room and I swore it, I have never meant anything more in my whole life, and if for some obscure reason I had to do it all again tomorrow in order to make the fact I took the original vow valid I would without hesitation.

I really meant it, I wanted that life with Bryan, in sickness, health, poorness, wealth, till death do us part. To this day I just find it so heart-breakingly sad that neither of us could be enough to each other to hold to such a high ideal. I have moved on now, I live in a different world in a different life, but it doesn't detract in anyway that not very long at all ago I swore my soul to something else entirely.

So inevitably as a result I find it quite hard to believe in love now irrelevant of how real and how deep it feels, because part of me always says 'well yes but you said that last time Toria'. It all jars rather unpleasantly with my ideals.

I don't like the way I doubt myself, and the way I feel about Luke, it makes me feel very sad and horribly guilty. I know it is terribly silly, I love Luke, I love him in an utterly different way to Bryan. I know how special Luke is, and in many ways I feel closer to him, and more like a wife to him than I ever did to Bryan.

Luke and I are meant to be together, we have been before in another time and space before the world began, it may sound silly, and it may well be my over active imagination but I honestly believe that is the case and that for whatever reason I have found him again. When we first started seeing each other I cried so much with the immense relief that I had found him again. Like my little soul had been missing him for all the wide eons of time since I last was with him.

It is the reason I refuse to let Luke go, despite the fact that I'm probably not quite ready for him. I refuse to let what has happened to get in the way of my life now, I don't pretend it doesn't affect it, but I will not let it change the way I behave and over-rule what I want in the here and now.

I want Luke more than anything I love him more than I can express and he makes me incredibly happy and gives me more support and love than I think anyone ever has before in my life.

But forever?

I have come to the conclusion that until I can be more sensible I shall live with the attitude that forever is as long as this life lasts. It isn't perfect, I wish I had more faith in myself and love, but I realise it is not something I can force, and that it is something that will come back to me in time because I'm the sort of person that believes in it enough to make it happen. circling to the point... this is what Somewhere Else sounds like, this hopeless tangled mess of love and guilt and disappointment and lost faith that you are trying to regain, this is what this album FEELS like.

To me the questionable chords and vocals, repetitive lyrics and themes echo it all, that is just what it is like inside my head, and inside my heart. I want it to be something better, I want it all to be neater, but that just isn't how it is, this is the core-truth of it all, and for that sole reason this album has become one of my very favourites.

It is very easy for me to over-identify with the protagonist of the album, and assume it is all h and the rest of the band just saying what they feel about themselves and their lives poetically, and to a large extent I think what makes Marillion so fantastic is that there isn't really a protagonist at all.
It is just honest, they serve up 'this is my life, this is how it feels' and all around the world a big nutty bunch of us have gone 'yeah holy-crap I feel just like that too!' and despite sounding very little like any other of their albums, once again the fantastic thing that makes Marillion what they are has shone through.

An ending... I need to come up with one of those before you die of horrid boredom, if you haven't already...I shall do the cheesy thing, and do the Somewhere Else ending.. you want my album review in short, this is it in a single quote...

'What I have here in my hand
Is like knowing but deeper
It’s why I am here
It’s why I am here'

Friday, 13 April 2007

So this would be the start...

I don't really know how this blog is going to turn out, I had another one a while ago that began as a tour-diary plotting my adventures as I skipped about the globe following my beloved bands, but then it descended into the odd update usually posted when I felt particularly strongly about some event or another.

I like having diaries, I try and keep one, though I start off well I then don't find the time to write them. Though I have decided that having an online one where I can type it in, and it will keep it for me in a nice ordered fashion may help matters. I have a tendency to not write anything for a while, and then write pages of stuff, which my little paper diary isn't really suitable for, so hopefully this will provide a better space for that. It will also be more legible!!

To some extent this is an homage to my friends Oli and Emily who both have blogs which I have found to be terrifying, amusing and a source of more strength than I can even begin to quantify. They both plot their end-stage Cystic Fibrosis journeys towards heart-lung transplants, and in Emily's case the life that follows one. The amount of times I have sat reading them and read my own frustrations before me, or been forced to admit a truth I was otherwise avoiding doesn't bare counting. I have come to the conclusion that it would be helpful to me to go through that process myself rather than extrapolating from theirs.

This element of self support is a continuing theme. I often find it helpful to read stuff written some time ago at a point when I was feeling strong and together, it reminds me what I am capable of, and stops me sinking into hopeless self pity, or just acts as a venting platform so I can drop the issue and move on.

In-fact the title of this blog comes from something I wrote once, I have referred to it so often now that I forget where I originally wrote it, but I think it first appeared in a letter I wrote to my dear friend h explaining everything that had been going on in my world, most notably its recent collapse, but I had come through it, and all the healing from it, with the strong determined attitude that I continue to uphold, this being...

...I was not made for one person, nor one life and I am capable of anything.