Coping
- Alex Flipse
- Annie
- Arabella
- Bailey Rains
- Cheryl Switzer
- Edith Morales
- Helen P
- Helen Quess
- Jackie Shultz
- Jenn Lalonde
- Jennie
- Jennifer Davis
- Jennifer Radley
- Jo Jordan
- Jo Williams
- Jode R Cox
- Joellen Brown
- June Taylor
- Linda Washburn
- Lynn Smith
- Marcia Beverly
- Marge Holdren
- Merle Reeseman
- Nancy Sterns
- Ray Thigpen
- Raymond Ritch
- Sarah Ing
- Stuart Berwick
- Tina Silks
Patient and Caregiver Diaries
Patient Diary -- Arabella
oldest to recent
Saturday, May 16, 2009
Appointment
Back from my Sydney app with specialist. Teddy seems to have grown twice as large with a winter coat, even though I was only away for five days. Seven degrees this morning and snow on the mountain.
So basically, ever since the appointment, I've been lying to my family. Things went fine at first; everything relatively stable. Pressures are now at 145 which is high but not necessarily a terrible thing as I'm still coping well. Platelets down. I need to take more 02. I knew that. Four to six hours a day, at least. Will have to start having it at night. That's all ok.
Then my dad left the room for the actual examination thing, and that's when I told the DR about my excessive fluid retention. She said it probably was back up from my heart and I had to have an ultrasound, and if it was, then it meant things had really detiorated, and I was back on 'the list'. Wow. And just like that, the life I had been gradually coming to terms with around my irksome-yet-stable health status, shimmered like a mirrage, and then vanished completely.
Even a half-life is better than no life. A stopped life.
Or a life full of hospitals and waiting and fleurescent lights and terrible pain, morphine addiction, and hard metal tables on bare skin and white gowns that don't close properly. Of having to be strong forever and ever. Of feeling like a child forever. Trapped in the role of a passive victim.
Or maybe. I don't know yet. Won't know until I next get this awful abdominal fluid thing back. Every couple of weeks, it's like a pregnancy that never was, or will be.
So I'm home now. My family still doesn't know. It was strange how my lie grew over the few days; once I started, I then had to keep going. "Oh yeah, the appointment went great. Everything's stable. Its pretty much just a routine appointment now."... and etc.
I feel too tired to tell anyone. I don't want to deal with it right now. I think I'll wait until I actually have the ultrasound. Have to have a liver scan or something as well. It will probably not be anything. I always get these things confused. Its probably not as bad as I think. Or maybe if I start actually using my 02 machine that will somehow help. There's no way I'm going to let myself think anything else here. And no point really, until I know.
Appointment
Back from my Sydney app with specialist. Teddy seems to have grown twice as large with a winter coat, even though I was only away for five days. Seven degrees this morning and snow on the mountain.
So basically, ever since the appointment, I've been lying to my family. Things went fine at first; everything relatively stable. Pressures are now at 145 which is high but not necessarily a terrible thing as I'm still coping well. Platelets down. I need to take more 02. I knew that. Four to six hours a day, at least. Will have to start having it at night. That's all ok.
Then my dad left the room for the actual examination thing, and that's when I told the DR about my excessive fluid retention. She said it probably was back up from my heart and I had to have an ultrasound, and if it was, then it meant things had really detiorated, and I was back on 'the list'. Wow. And just like that, the life I had been gradually coming to terms with around my irksome-yet-stable health status, shimmered like a mirrage, and then vanished completely.
Even a half-life is better than no life. A stopped life.
Or a life full of hospitals and waiting and fleurescent lights and terrible pain, morphine addiction, and hard metal tables on bare skin and white gowns that don't close properly. Of having to be strong forever and ever. Of feeling like a child forever. Trapped in the role of a passive victim.
Or maybe. I don't know yet. Won't know until I next get this awful abdominal fluid thing back. Every couple of weeks, it's like a pregnancy that never was, or will be.
So I'm home now. My family still doesn't know. It was strange how my lie grew over the few days; once I started, I then had to keep going. "Oh yeah, the appointment went great. Everything's stable. Its pretty much just a routine appointment now."... and etc.
I feel too tired to tell anyone. I don't want to deal with it right now. I think I'll wait until I actually have the ultrasound. Have to have a liver scan or something as well. It will probably not be anything. I always get these things confused. Its probably not as bad as I think. Or maybe if I start actually using my 02 machine that will somehow help. There's no way I'm going to let myself think anything else here. And no point really, until I know.
Read Comments (3) • Make a Comment
Thursday, May 21, 2009
incoherence mostly
Well I'm writing here again when all the time I think no, have to stop. I don't like having all this stuff online for anyone to read. Often I come here and delete it all. Think I might get a private diary thing. I wonder if that would be the same. Confession is not the same at all when its just to yourself. Might as well be talking to myself in the mirror.
Saw the episode of Grays last night with the girl with PH. Was not particularly impressed. Do they portray all medical cases like that; just as avenues for doctors to go through personal shit? Never noticed it like that before. And yes, of course PH is just fine when you have a cute rhinestone backpack to put your IV pump in. A happy skip down the narrow little bridge to transplant. No mention of how much her life will be affected in the future. Sick people should be grateful just to be alive. Not thinking about all their lives could have been, all they never will be. Don't dwell on it. Focus on the positive side of life. Works for a while, but only for a while.
Every night now I lie gripped in the coils of the O2 concentrator. It roars and breaths all night long and I wear ear plugs to block it out. I can still hear it though, and I can feel it on my face like cold tentacles. Every night for the rest of my life I will have to sleep with it. I will have to wear ear plugs and listen to my heart pounding in them and gradually let myself drift off through the anxiety of being hooked up to a clunky old machine, that lets face it, could do anything. Start emitting toxic air. Suddenly catch on fire. And I won't be able to hear anything. I won't wake up. Even worse: its going to kill any slim chance of a sex life I had left.
So as usual, this is what I have to do. Be brave. Face possible death by machine malfunction. Tell myself how stupid I'm being. And forget about sex. Be grateful for the miraculous fact that Mr B has been a puffball dream of a cat. Sleeps all night long and doesn't ask to go out. Doesn't mind the noise. And I'll get used to the noise eventually. Or maybe I'll save up and buy a quiet one. More than the noise, I hate the thought of the all the electricity it uses. I'm used to being such a stinge on my aurora bill. And then there's the usual meaningless middle class guilt about fossil fuels and using planet resources. I could buy a nice 'eco-freindly' one or some shit and feel a lot better about existing for my ten thousand bucks. I wonder if it would be worth it?
What else is happening in PH land? Well, nothing much. Have to have that scan but waiting. Trying not to remember that Dr K said the word transplant to me last time I saw her. I imagined it. Must have. No-one else knows, or wants to know. At the dinner party the other night they all said, 'so your health's like all fine and everything, right?' and I just knew there was no other option. Of course its fine. Everything's good. Don't blame them. I don't want to know either. And really, I do feel fine. Normal. And I haven't had any pregnant days yet, and perhaps they won't come back at all. Health and sickness are spread across my days in a fine gradiating mist of colour... its hard to be definitive really. In the end I just wish for a lot of things that just add up to being able to have a life that resembles other peoples. It really does make me feel strange, being so out of things. I'm not a lone wolf. I'm a crowd follower. Or to a degree, anyway. I'm comfortable on the fringe, but not too far off it. Its a lonely black night sky out there and when your space ship leaves thats it, there's no getting home again.
incoherence mostly
Well I'm writing here again when all the time I think no, have to stop. I don't like having all this stuff online for anyone to read. Often I come here and delete it all. Think I might get a private diary thing. I wonder if that would be the same. Confession is not the same at all when its just to yourself. Might as well be talking to myself in the mirror.
Saw the episode of Grays last night with the girl with PH. Was not particularly impressed. Do they portray all medical cases like that; just as avenues for doctors to go through personal shit? Never noticed it like that before. And yes, of course PH is just fine when you have a cute rhinestone backpack to put your IV pump in. A happy skip down the narrow little bridge to transplant. No mention of how much her life will be affected in the future. Sick people should be grateful just to be alive. Not thinking about all their lives could have been, all they never will be. Don't dwell on it. Focus on the positive side of life. Works for a while, but only for a while.
Every night now I lie gripped in the coils of the O2 concentrator. It roars and breaths all night long and I wear ear plugs to block it out. I can still hear it though, and I can feel it on my face like cold tentacles. Every night for the rest of my life I will have to sleep with it. I will have to wear ear plugs and listen to my heart pounding in them and gradually let myself drift off through the anxiety of being hooked up to a clunky old machine, that lets face it, could do anything. Start emitting toxic air. Suddenly catch on fire. And I won't be able to hear anything. I won't wake up. Even worse: its going to kill any slim chance of a sex life I had left.
So as usual, this is what I have to do. Be brave. Face possible death by machine malfunction. Tell myself how stupid I'm being. And forget about sex. Be grateful for the miraculous fact that Mr B has been a puffball dream of a cat. Sleeps all night long and doesn't ask to go out. Doesn't mind the noise. And I'll get used to the noise eventually. Or maybe I'll save up and buy a quiet one. More than the noise, I hate the thought of the all the electricity it uses. I'm used to being such a stinge on my aurora bill. And then there's the usual meaningless middle class guilt about fossil fuels and using planet resources. I could buy a nice 'eco-freindly' one or some shit and feel a lot better about existing for my ten thousand bucks. I wonder if it would be worth it?
What else is happening in PH land? Well, nothing much. Have to have that scan but waiting. Trying not to remember that Dr K said the word transplant to me last time I saw her. I imagined it. Must have. No-one else knows, or wants to know. At the dinner party the other night they all said, 'so your health's like all fine and everything, right?' and I just knew there was no other option. Of course its fine. Everything's good. Don't blame them. I don't want to know either. And really, I do feel fine. Normal. And I haven't had any pregnant days yet, and perhaps they won't come back at all. Health and sickness are spread across my days in a fine gradiating mist of colour... its hard to be definitive really. In the end I just wish for a lot of things that just add up to being able to have a life that resembles other peoples. It really does make me feel strange, being so out of things. I'm not a lone wolf. I'm a crowd follower. Or to a degree, anyway. I'm comfortable on the fringe, but not too far off it. Its a lonely black night sky out there and when your space ship leaves thats it, there's no getting home again.
Read Comments (3) • Make a Comment
Monday, May 25, 2009
things and birthday remnants and flolan thoughts
Monday. Phone calls to make but I'm not making them yet. The house is quiet and winter shadowy. The day is holding itself grey and still against the windows. I'm typing here, eating a perfectly cooked soft-boiled egg and with a cup of tea 'rising to my lips like a prayer' as Leunig says. Can hear traffic outside. Always traffic, but I usually don't notice it. Its amazing what one gets used to after a while.
Last night was my birthday drinks and I drank for the first time in about a year. Whiskeys, all night. Mostly just on the edge of drunk and occasionally stumbling over it. Nice warm yellow night. Lots of people. Couldn't believe how many ppl came just for little ole me. Had been thinking hardly anyone would come for some reason and had only booked a table for about five. Oops. But was plenty of room, people drew up chairs or drifted from table to table. Was lovely to hang out with everyone and everyone seemed so happy and to be having a great time. I thought all the time about how much I love all these people I have met since moving to Hobart. M gave me a tin box from the tip shop with a picture of a cat that looks like Mr B. Very cute. Love tip shop presents. And a book called 'the pornography of meat'. Lol. Sequal to one a I read in the uni library that connected Western over-consumption of meat products with male hegemony. ha ha. A whole new set of reasons to be vego. Love it.
We got kicked out when the pub closed and I stumbled home, went to bed with O2 but it didn't seem to work well for me like it has been. Didn't really care. What's the worst that could happen? The specialist said nothing. Nothing bad would happen.
Stayed in bed until midday, sleeping when I could, staring at the ceiling, trying to take deep breaths. I thought about Jenn and flolan. And tried to imagine having to walk around with an IV port and a backpack, with something like that going in under my skin, drip-dripping away all the time... It was hard to think about, especially since it one day could be on the cards for me, too. And the hassle of having to look after the thing is equally unwelcome. I suppose these things intrude into our lives and we just have to live around them as best we can. I remember about four years ago when I was more active (less sick, or just more active and in denial? Not sure...) I looked after a wallaby joey for a few months. Totally different from flolan of course but when I think about flolan and the work that goes into sterilising everything that's what I think of. Boiling water and milk bottles. And carting the thing around and having to feed it every three or four hours. It was kind of exhausting. After a while it became routine, I suppose. Oh, and then there was the illiprost. That's the other thing I remember that took a lot of that kind of work. And unlike a wallaby, illiprost doesn't stare up at you with cute little eyes fringed by incredibly long eye-lashes. Its irk, and boring, all that sterilising of stuff. Mixing things. And the repetition. Maybe it's the repetition that gets to you in the end.
That's the thing about being sick, you never get a day off, a sleep-in, a holiday. Its kind of a life sentence. But I'm really, really, hoping very hard here, that Jenn will be able to work flolan into a do-able routine, and then that the stuff actually works, and enables her to get her life back as much as possible. A repreive of sorts, parole for good behaviour. That would be great.
things and birthday remnants and flolan thoughts
Monday. Phone calls to make but I'm not making them yet. The house is quiet and winter shadowy. The day is holding itself grey and still against the windows. I'm typing here, eating a perfectly cooked soft-boiled egg and with a cup of tea 'rising to my lips like a prayer' as Leunig says. Can hear traffic outside. Always traffic, but I usually don't notice it. Its amazing what one gets used to after a while.
Last night was my birthday drinks and I drank for the first time in about a year. Whiskeys, all night. Mostly just on the edge of drunk and occasionally stumbling over it. Nice warm yellow night. Lots of people. Couldn't believe how many ppl came just for little ole me. Had been thinking hardly anyone would come for some reason and had only booked a table for about five. Oops. But was plenty of room, people drew up chairs or drifted from table to table. Was lovely to hang out with everyone and everyone seemed so happy and to be having a great time. I thought all the time about how much I love all these people I have met since moving to Hobart. M gave me a tin box from the tip shop with a picture of a cat that looks like Mr B. Very cute. Love tip shop presents. And a book called 'the pornography of meat'. Lol. Sequal to one a I read in the uni library that connected Western over-consumption of meat products with male hegemony. ha ha. A whole new set of reasons to be vego. Love it.
We got kicked out when the pub closed and I stumbled home, went to bed with O2 but it didn't seem to work well for me like it has been. Didn't really care. What's the worst that could happen? The specialist said nothing. Nothing bad would happen.
Stayed in bed until midday, sleeping when I could, staring at the ceiling, trying to take deep breaths. I thought about Jenn and flolan. And tried to imagine having to walk around with an IV port and a backpack, with something like that going in under my skin, drip-dripping away all the time... It was hard to think about, especially since it one day could be on the cards for me, too. And the hassle of having to look after the thing is equally unwelcome. I suppose these things intrude into our lives and we just have to live around them as best we can. I remember about four years ago when I was more active (less sick, or just more active and in denial? Not sure...) I looked after a wallaby joey for a few months. Totally different from flolan of course but when I think about flolan and the work that goes into sterilising everything that's what I think of. Boiling water and milk bottles. And carting the thing around and having to feed it every three or four hours. It was kind of exhausting. After a while it became routine, I suppose. Oh, and then there was the illiprost. That's the other thing I remember that took a lot of that kind of work. And unlike a wallaby, illiprost doesn't stare up at you with cute little eyes fringed by incredibly long eye-lashes. Its irk, and boring, all that sterilising of stuff. Mixing things. And the repetition. Maybe it's the repetition that gets to you in the end.
That's the thing about being sick, you never get a day off, a sleep-in, a holiday. Its kind of a life sentence. But I'm really, really, hoping very hard here, that Jenn will be able to work flolan into a do-able routine, and then that the stuff actually works, and enables her to get her life back as much as possible. A repreive of sorts, parole for good behaviour. That would be great.
Read Comments (1) • Make a Comment
Tuesday, May 26, 2009
There's so much ...
There's so much I should be doing right now. Oh well. Plenty of time. Tomorrow, tomorrow, always tomorrow. O2 person meant to come tomorrow, in the morning. I want a quieter machine. Woosh, woosh, all night. Rattle rattle. And I feel guilty of course because other people in the house can hear it. Kind of a tricky situation. Not like they would ever tell me not to use it if it annoyed them. They just have to put up with it. Oh the tyrrany of the sick.
Speaking of the paradoxical tyrrany of the disempowered; a weeping woman is buying my car. Or trying to extort me, I'm not sure. She sniffles and she has large reumy eyes like a camel's, and she blows her nose continually. I feel sorry for her both because of tragedy in her life, and for the fact that even though it is behind her, she can't seem to shake it. She mingles hints of personal tragedy with desperate attempts at getting down the price of my car. The whole thing seems quite unethical to me. I would hate to do the same because I think in the end it would make me feel more vulnerable, more pathetic, more weak. I don't want someone to give me a good deal because they feel sorry for me. It wouldn't be worth it. Don't think so, anyway. But maybe that's just me and my skewed world view; my stupid code of ethics which casts me as a much stronger individual than I am in reality. But reality crumbles under the need for a high ideal of ourselves.
Perhaps she's right to do it. Maybe we should wear our illnesses on our sleeves and shout about them to everyone until... Until we feel completely disempowered? A difficult balance, I think, that I constantly negotiate. This tension between needing ppl to understand and not wanting to be seen and treated differently.
There's so much ...
There's so much I should be doing right now. Oh well. Plenty of time. Tomorrow, tomorrow, always tomorrow. O2 person meant to come tomorrow, in the morning. I want a quieter machine. Woosh, woosh, all night. Rattle rattle. And I feel guilty of course because other people in the house can hear it. Kind of a tricky situation. Not like they would ever tell me not to use it if it annoyed them. They just have to put up with it. Oh the tyrrany of the sick.
Speaking of the paradoxical tyrrany of the disempowered; a weeping woman is buying my car. Or trying to extort me, I'm not sure. She sniffles and she has large reumy eyes like a camel's, and she blows her nose continually. I feel sorry for her both because of tragedy in her life, and for the fact that even though it is behind her, she can't seem to shake it. She mingles hints of personal tragedy with desperate attempts at getting down the price of my car. The whole thing seems quite unethical to me. I would hate to do the same because I think in the end it would make me feel more vulnerable, more pathetic, more weak. I don't want someone to give me a good deal because they feel sorry for me. It wouldn't be worth it. Don't think so, anyway. But maybe that's just me and my skewed world view; my stupid code of ethics which casts me as a much stronger individual than I am in reality. But reality crumbles under the need for a high ideal of ourselves.
Perhaps she's right to do it. Maybe we should wear our illnesses on our sleeves and shout about them to everyone until... Until we feel completely disempowered? A difficult balance, I think, that I constantly negotiate. This tension between needing ppl to understand and not wanting to be seen and treated differently.
Read Comments (2) • Make a Comment
Wednesday, May 27, 2009
more dot dot dot
hate it how when I feel stressed out it makes me sicker and then I feel like a whining hypochondriac. Its weird. 02 company called today. yesteryday they told me I could definitely have a quieter machine and today they said sorry, there are none available. When? Are we talking days, weeks, months? They said they didn't know but probably months. Despair, despair. Don't think I can sleep with this one. I cried on the phone. They were sorry. Nothing they could do. Even the supposedly 'quieter' one, they said, isn't that quiet. Why? I asked. They said they didn't have contracts with the companies that produced the quiete ones. Well get them, I said. Not up to us, they said. Blah. Have to buy one. Seven thousand dollars or so. Ouch. And this car lady still hasn't called me back, that's stressful. I thought I wasn't that stressed about it, but I woke up at three am thismorning and thought about it for hours, listening to the rattle and choke of the machine in my room. I may never sleep again. I just wish she would call me. Telling me she can't talk about it right now because she's too upset, and she'll call me next week is just bad business, bad behaviour. So double blah. Nick Cave blaring. Mr B meows in perfect time. Always knew he had a secrete dark soul hidden away in there. Worst thing about this 02 thing is I realised today that I'm probably waiting for someone to die to free one up. Not a pleasant thought. Lucky for them thoughts and wishes don't actually have any effect on real life.
more dot dot dot
hate it how when I feel stressed out it makes me sicker and then I feel like a whining hypochondriac. Its weird. 02 company called today. yesteryday they told me I could definitely have a quieter machine and today they said sorry, there are none available. When? Are we talking days, weeks, months? They said they didn't know but probably months. Despair, despair. Don't think I can sleep with this one. I cried on the phone. They were sorry. Nothing they could do. Even the supposedly 'quieter' one, they said, isn't that quiet. Why? I asked. They said they didn't have contracts with the companies that produced the quiete ones. Well get them, I said. Not up to us, they said. Blah. Have to buy one. Seven thousand dollars or so. Ouch. And this car lady still hasn't called me back, that's stressful. I thought I wasn't that stressed about it, but I woke up at three am thismorning and thought about it for hours, listening to the rattle and choke of the machine in my room. I may never sleep again. I just wish she would call me. Telling me she can't talk about it right now because she's too upset, and she'll call me next week is just bad business, bad behaviour. So double blah. Nick Cave blaring. Mr B meows in perfect time. Always knew he had a secrete dark soul hidden away in there. Worst thing about this 02 thing is I realised today that I'm probably waiting for someone to die to free one up. Not a pleasant thought. Lucky for them thoughts and wishes don't actually have any effect on real life.
Read Comments (1) • Make a Comment
Friday, May 29, 2009
feeling tomorrow like I feel today
Feeling tomorrow, like I feel today. Bessie Smith lyrics. But today I feel okay. Should be studying. Air, air, air. What's to be done about it. Its cold, so I have the door closed. Then can't breath. Tutorial yesterday couldn't breath very well, but sort of got better towards the end. Or maybe I just forgot about it. Went outside afterwards, ah. Big relief. Air again. But had just got essay back as well, so was more interested in that. I like it when life is distracting enough. Nick Cave and then the slightly less dark and scary Nick Drake on the cd player. But its quiet now because I'm supposed to be studying. Unfortunately my brain isn't like my computer's dual-core processor thing, ha ha- it can only process one bit of info at a time, it seems... Music weaves in and out of my mind all the time, nonetheless. My room is heating up without me in it. Friday night soon but I wouldn't go out anyway, study, study. And work tomorrow. I think. S told me car lady drove her to hosp this a.m. So she must still want the car. Or she would have driven it back. Strange. I'm feeling trepadatious to say the least about our next conversation. Was going to call her but decided against it. Strong person? Me? What strength. I'm all jelly and indescision and backpeddalling. But I was pissed off. I should stick to that, it might help me out. Talked to G on phone for longest time last night. Think I want to go to melbourne to visit. And just then I was thinking I want to go to WA to visit L who also has PH. Would be amazing to actually hang out with someone who has PH. I was picturing us taking a walk on the beach together, mutually slow... ha ha. But its all money, money, money. Well, and there are other considerations now too. O2 being one of them. Had fight with P over O2 machine and taking it to Bruny Is cabin. She thinks I should, but I just can't imagine it. Doesn't fit in with the whole camping ethos somehow. And the noise would keep everyone awake all night. A bloody rediculous idea. To take it, I mean. That I can even go to things like camping trips any more. Does that mean I can't? I don't know. Maybe a portable one. But I'm so opposed to anything that makes me stand out. And people doing extra work for me. That's really the problem here. I was picturing ppl carrying the horrible thing up the steps into the cabin, and thinking, no, no no, wouldn't work. Not doing it. So anyway, Melbourne or WA would be similar problems. Plus all that walking and airports and tiredness. Its all a bit hard. It was nice to be in Sydney with my dad and my sister but also its kind of draining having to cope with their new way of seeing me; ie, as a helpless disabled person. Sucks. My sister's different, come to think of it. She seems to have this new idea about us; I'm the healthy one and she's the sick one. Interesting. Kind of refreshing, except the whole time we were talking about her failing health I was wondering if it was true. Words like hypochondria tend to come into my head at those times, assisted by her constant trekking back and forth between various alternative therapists; acupuncturists, kinesiologists, naturopaths, hypnotherapists... but hypochondria is too dismissive, and doesn't take her seriously enough. She seems to have long history of emotional upheaval all connected to me of course- I was the sick one when we were kids, so she was never allowed to be sick. Ever, apparently. She could have a point. My presence seems to have caused her lots of problems, many of them on-going. And I have a long history of not taking her seriously, and I don't want to do that again. And its true that apart from PH and heart problems I'm pretty healthy. I hardly ever have colds. Perhaps I have a 'strong constitution', ha ha. A very 'Victorian literature' idea, with all their fixed notions of character. I want to beleive that because it makes me feel more confident about the future. During our conversation I rather enjoyed this new idea of me as healthy, although as this was just after my appointment with Dr K, the word 'transplant' was flashing in neon letters across the back of my mind. But that might not happen, and resilience is an actuality, not just some fictional ideological creation. So who knows. That doesn't leave C in a very good place, however. I don't like the idea of her thinking of herself as inherently weak and sick. Its just not true, and certainly not helpful. Sometimes I wonder about these alternative ppl. Why they tell her these things. But I'm very paranoid, of course, and no-where more paranoid than when I'm deep into one of these stream of conciousness diary rant things I seem to be writing lately...
feeling tomorrow like I feel today
Feeling tomorrow, like I feel today. Bessie Smith lyrics. But today I feel okay. Should be studying. Air, air, air. What's to be done about it. Its cold, so I have the door closed. Then can't breath. Tutorial yesterday couldn't breath very well, but sort of got better towards the end. Or maybe I just forgot about it. Went outside afterwards, ah. Big relief. Air again. But had just got essay back as well, so was more interested in that. I like it when life is distracting enough. Nick Cave and then the slightly less dark and scary Nick Drake on the cd player. But its quiet now because I'm supposed to be studying. Unfortunately my brain isn't like my computer's dual-core processor thing, ha ha- it can only process one bit of info at a time, it seems... Music weaves in and out of my mind all the time, nonetheless. My room is heating up without me in it. Friday night soon but I wouldn't go out anyway, study, study. And work tomorrow. I think. S told me car lady drove her to hosp this a.m. So she must still want the car. Or she would have driven it back. Strange. I'm feeling trepadatious to say the least about our next conversation. Was going to call her but decided against it. Strong person? Me? What strength. I'm all jelly and indescision and backpeddalling. But I was pissed off. I should stick to that, it might help me out. Talked to G on phone for longest time last night. Think I want to go to melbourne to visit. And just then I was thinking I want to go to WA to visit L who also has PH. Would be amazing to actually hang out with someone who has PH. I was picturing us taking a walk on the beach together, mutually slow... ha ha. But its all money, money, money. Well, and there are other considerations now too. O2 being one of them. Had fight with P over O2 machine and taking it to Bruny Is cabin. She thinks I should, but I just can't imagine it. Doesn't fit in with the whole camping ethos somehow. And the noise would keep everyone awake all night. A bloody rediculous idea. To take it, I mean. That I can even go to things like camping trips any more. Does that mean I can't? I don't know. Maybe a portable one. But I'm so opposed to anything that makes me stand out. And people doing extra work for me. That's really the problem here. I was picturing ppl carrying the horrible thing up the steps into the cabin, and thinking, no, no no, wouldn't work. Not doing it. So anyway, Melbourne or WA would be similar problems. Plus all that walking and airports and tiredness. Its all a bit hard. It was nice to be in Sydney with my dad and my sister but also its kind of draining having to cope with their new way of seeing me; ie, as a helpless disabled person. Sucks. My sister's different, come to think of it. She seems to have this new idea about us; I'm the healthy one and she's the sick one. Interesting. Kind of refreshing, except the whole time we were talking about her failing health I was wondering if it was true. Words like hypochondria tend to come into my head at those times, assisted by her constant trekking back and forth between various alternative therapists; acupuncturists, kinesiologists, naturopaths, hypnotherapists... but hypochondria is too dismissive, and doesn't take her seriously enough. She seems to have long history of emotional upheaval all connected to me of course- I was the sick one when we were kids, so she was never allowed to be sick. Ever, apparently. She could have a point. My presence seems to have caused her lots of problems, many of them on-going. And I have a long history of not taking her seriously, and I don't want to do that again. And its true that apart from PH and heart problems I'm pretty healthy. I hardly ever have colds. Perhaps I have a 'strong constitution', ha ha. A very 'Victorian literature' idea, with all their fixed notions of character. I want to beleive that because it makes me feel more confident about the future. During our conversation I rather enjoyed this new idea of me as healthy, although as this was just after my appointment with Dr K, the word 'transplant' was flashing in neon letters across the back of my mind. But that might not happen, and resilience is an actuality, not just some fictional ideological creation. So who knows. That doesn't leave C in a very good place, however. I don't like the idea of her thinking of herself as inherently weak and sick. Its just not true, and certainly not helpful. Sometimes I wonder about these alternative ppl. Why they tell her these things. But I'm very paranoid, of course, and no-where more paranoid than when I'm deep into one of these stream of conciousness diary rant things I seem to be writing lately...
Read Comments (0) • Make a Comment
Sunday, May 31, 2009
dream
So cold here today, fingers numb can hardly type the right keys. woke this morning from a dream and realised I have it quite a lot. one of those anxiety kind of dreams. In this one I'm late for my once a year appointment with Dr K, and have to get there quickly. Is kind of funny. For some reason there is a zoo in the way (possibly from when I used to go to Parkville in Melb, which is actually near a zoo) and so I have to negotiate huge fences, hide from zoo keepers, and sneak past scary animals. this morning I was trying to quietly paddle a log past a sleeping aligator while a hungry looking bear prowled on the bank nearby. Most bizzare. And all with the urgency of not missing this appiointment. Ahead I can see the grey building, another fence. And some steep metal stairs like in a fire escape. I'm not sure which I consider more of a challenge, the predatory animals, the stairs ahead, or of-course the officious secretary at the Dr's office who will tell me I'm too late and to come back next year... All very strange. Staying at home today studying for exam. Heater on. exam next saturday. re-reading Kim by Rudyard Kipling. Am actually enjoying it now. But really need to study it in more organised way not just read the book again and take random notes. Oh well. Dinner last night at republic. Was ok. Stitch and Bitch thing tonight up in S street, have to walk up there. Ag. Don't want to. But I will. It's just like with the aligator and the bear and the metal stairs. You see even in sleep you can't escape your life.
dream
So cold here today, fingers numb can hardly type the right keys. woke this morning from a dream and realised I have it quite a lot. one of those anxiety kind of dreams. In this one I'm late for my once a year appointment with Dr K, and have to get there quickly. Is kind of funny. For some reason there is a zoo in the way (possibly from when I used to go to Parkville in Melb, which is actually near a zoo) and so I have to negotiate huge fences, hide from zoo keepers, and sneak past scary animals. this morning I was trying to quietly paddle a log past a sleeping aligator while a hungry looking bear prowled on the bank nearby. Most bizzare. And all with the urgency of not missing this appiointment. Ahead I can see the grey building, another fence. And some steep metal stairs like in a fire escape. I'm not sure which I consider more of a challenge, the predatory animals, the stairs ahead, or of-course the officious secretary at the Dr's office who will tell me I'm too late and to come back next year... All very strange. Staying at home today studying for exam. Heater on. exam next saturday. re-reading Kim by Rudyard Kipling. Am actually enjoying it now. But really need to study it in more organised way not just read the book again and take random notes. Oh well. Dinner last night at republic. Was ok. Stitch and Bitch thing tonight up in S street, have to walk up there. Ag. Don't want to. But I will. It's just like with the aligator and the bear and the metal stairs. You see even in sleep you can't escape your life.
Read Comments (0) • Make a Comment
Monday, June 01, 2009
things i think about while walking up hills
wierd because i wrote in here before but its gone. oh well. cold again today. so cold i can hardly breath. but that's ok, because there is a reason, a reason. reasons for things make life bearable. reading Kim all morning and i really love that book now, am glad i'll be writing about it in exam, hope it goes well. it may not. but that's exams for you. Mr B trumpets like an elephant at the door. better let him him. scrape go the claws. 02 machine kind of better now don't notice it. told my flatmate i'd get a new quieter one but then that fell through. so if they really care they can ask and then i'll buy a quiet one. and if they don't ask then i'll just let it go. seems ok. i think i'm getting used to it. W moving out any day now and there goes that problem. why is it such a problem? I don't know. I usually get on well with everyone. but the yelling at me thing and swearing doesn't help. can't be very conducive to freindly relations overall. feel terrible saying this, but thank goodness for working visas and policeman with speed cameras. stitch and bitch thing last night. hate the name of that. sounds old fashioned, a bit sexist. calling women that word disempowers them somehow, renders their concerns trivial. but here we are in the post feminist age so i should really get over it i suppose. anyway the evening was warm and full of conversation, minute connections, cookies and oniony crumbly cheese and biscuits. the momentary oblivian of laughter. worth three thousand nights of telivision escapism. the old rental house carpet and the heater, the Rousau jungle paintings all over the walls. those cold indifferent wildernesses, vacant indigo skies pricked with stars. to get there walked up S street, where colonial mansions loom like pink and white frosted cakes. leaned back agianst the wall inside a clump of jasmine. dark night, half moon. white flowers in my hair and face. and my heart thunking away, could hear it louder than ever before. but i was hidden, and no-one in the street. kept walking and saw all the long rows of stone queen's heads that sit on the old terraces, stern monuments to... what? queen and empire, perhaps. or to women, to the moral guardians of the previous age. They stare so composedly, so confidently. how could they have ever done that? the world is made of different stuff now, more shiny, illusiary, and changeable fabric than ever before, and they had no idea. just over the road in the local pub david bowie spins sequinned tales of wonder with muppets on a projector screen while people shiver in fold-up chairs and order more beer. meanwhile down the garden of J's flat a middle aged woman roams restelessly, grabbing moon-white clumps of leaves and muttering to herself like Ophelia, although she's too old, and too large with cheap food and beer to strew flowers with her tears. and then there's me, hiding in the jasime bush like a the criminally ill, waiting for those quick-walking young people to power up the hill in their sneakers so that I can resume my gradual inclinations... what do those women, those quiet, dignified queens, angels, or godesses, think of all these things, I wonder?
things i think about while walking up hills
wierd because i wrote in here before but its gone. oh well. cold again today. so cold i can hardly breath. but that's ok, because there is a reason, a reason. reasons for things make life bearable. reading Kim all morning and i really love that book now, am glad i'll be writing about it in exam, hope it goes well. it may not. but that's exams for you. Mr B trumpets like an elephant at the door. better let him him. scrape go the claws. 02 machine kind of better now don't notice it. told my flatmate i'd get a new quieter one but then that fell through. so if they really care they can ask and then i'll buy a quiet one. and if they don't ask then i'll just let it go. seems ok. i think i'm getting used to it. W moving out any day now and there goes that problem. why is it such a problem? I don't know. I usually get on well with everyone. but the yelling at me thing and swearing doesn't help. can't be very conducive to freindly relations overall. feel terrible saying this, but thank goodness for working visas and policeman with speed cameras. stitch and bitch thing last night. hate the name of that. sounds old fashioned, a bit sexist. calling women that word disempowers them somehow, renders their concerns trivial. but here we are in the post feminist age so i should really get over it i suppose. anyway the evening was warm and full of conversation, minute connections, cookies and oniony crumbly cheese and biscuits. the momentary oblivian of laughter. worth three thousand nights of telivision escapism. the old rental house carpet and the heater, the Rousau jungle paintings all over the walls. those cold indifferent wildernesses, vacant indigo skies pricked with stars. to get there walked up S street, where colonial mansions loom like pink and white frosted cakes. leaned back agianst the wall inside a clump of jasmine. dark night, half moon. white flowers in my hair and face. and my heart thunking away, could hear it louder than ever before. but i was hidden, and no-one in the street. kept walking and saw all the long rows of stone queen's heads that sit on the old terraces, stern monuments to... what? queen and empire, perhaps. or to women, to the moral guardians of the previous age. They stare so composedly, so confidently. how could they have ever done that? the world is made of different stuff now, more shiny, illusiary, and changeable fabric than ever before, and they had no idea. just over the road in the local pub david bowie spins sequinned tales of wonder with muppets on a projector screen while people shiver in fold-up chairs and order more beer. meanwhile down the garden of J's flat a middle aged woman roams restelessly, grabbing moon-white clumps of leaves and muttering to herself like Ophelia, although she's too old, and too large with cheap food and beer to strew flowers with her tears. and then there's me, hiding in the jasime bush like a the criminally ill, waiting for those quick-walking young people to power up the hill in their sneakers so that I can resume my gradual inclinations... what do those women, those quiet, dignified queens, angels, or godesses, think of all these things, I wonder?
Read Comments (0) • Make a Comment
Wednesday, June 03, 2009
study and other stuff
went to uni today, returned some books. tried to study in the library but unable to breath properly in there, never seems to be enough air. so went to a table outside and froze for a while although not too bad really. drank ice cold water from a plastic cup and scribbled notes about HG Wells and The Time Machine novel and decadance and the sun fizzing out. all very exciting. came home after a while and went to cafe, i went there with G when she visited and they tried to kick us out- totally rude so I told them off. since then i have a theory they don't like me and try to get rid of me. also, cafes don't like people who sit there with one coffee and study for hours. not really good for business so i can't blame them, really. Although... in a perfect world, cafes should be places where ppl can do that sort of thing, not just be rabbid money-grubbing mini-corporations. Anyway, at five or so they completely dimmed the lights. couldn't read any more. but its probably just what they do at that time of the evening. they stay open very late but they like to inculcate some kind of groovy night club vibe or something. silly people. so went home and studied at my table, also freezing because i won't let myself turn the heater on before six. my rule, for what its worth. W is still here, but i think he's going after the eleventh. has court hearing. made me write them a letter asking for early date, which I did in my best yours most faithfully handwriting. i'm a nice housemate sometimes. what else today? wore my wonderful new faux fur coat. yay. tomorrow, must remember to go to post office. still no one has called up about this room here and I don't know why. most perplexing. i guess its a bad time of year, exams, etc. no-one's moving house. 02 at night is still good, but sometimes i wake up and feel like I used to. I think I might try turning it up, but I'm scared I'll be back to the same problems again. not sure... saw a wonderful whiz bang thing on the net that actually senses how much 02 you need and adjusts accordingly. Or I think I did. could have compltely made that up, it sounds so unlikely...
study and other stuff
went to uni today, returned some books. tried to study in the library but unable to breath properly in there, never seems to be enough air. so went to a table outside and froze for a while although not too bad really. drank ice cold water from a plastic cup and scribbled notes about HG Wells and The Time Machine novel and decadance and the sun fizzing out. all very exciting. came home after a while and went to cafe, i went there with G when she visited and they tried to kick us out- totally rude so I told them off. since then i have a theory they don't like me and try to get rid of me. also, cafes don't like people who sit there with one coffee and study for hours. not really good for business so i can't blame them, really. Although... in a perfect world, cafes should be places where ppl can do that sort of thing, not just be rabbid money-grubbing mini-corporations. Anyway, at five or so they completely dimmed the lights. couldn't read any more. but its probably just what they do at that time of the evening. they stay open very late but they like to inculcate some kind of groovy night club vibe or something. silly people. so went home and studied at my table, also freezing because i won't let myself turn the heater on before six. my rule, for what its worth. W is still here, but i think he's going after the eleventh. has court hearing. made me write them a letter asking for early date, which I did in my best yours most faithfully handwriting. i'm a nice housemate sometimes. what else today? wore my wonderful new faux fur coat. yay. tomorrow, must remember to go to post office. still no one has called up about this room here and I don't know why. most perplexing. i guess its a bad time of year, exams, etc. no-one's moving house. 02 at night is still good, but sometimes i wake up and feel like I used to. I think I might try turning it up, but I'm scared I'll be back to the same problems again. not sure... saw a wonderful whiz bang thing on the net that actually senses how much 02 you need and adjusts accordingly. Or I think I did. could have compltely made that up, it sounds so unlikely...
Read Comments (0) • Make a Comment
Sunday, June 07, 2009
The Notorious Miss Redman's Residence is Revealed
We alighted the horse-bus, Miss Redman doing so with some difficulty on account of the great basket she held on her arm; which she would on no account allow me to take charge of, insisting it was far too important to entrust to a middling creature such as myself. The sky was a dirty yellowish colour, hanging low, and the very streets seemed to gleam and glimmer with its reflection. The pavements were filled with garishly dressed, riotous, men and women; either homeward-bound factory workers or recent spectators at some football match. Whatever they were, they shouted and called to one another in a most familiar and colloqiol manner, causing other pedestrians to shake their heads and attempt to hurry past as quickly as possible, trying in vain to escape the boisterous exchanges. I was most shocked to note that Miss Redman had no such similar designs, and indeed seemed to revel in the crowds. Clutching her outlandish hat and her large, awkward, basket in one hand, and grabbing hold of my wrist in an outrageously familiar way with her other, she laughed while attempting to pull me through the ever-thickening throngs of people. Eventually we emerged at a side street, on the corner of which stood a shabby-looking dry-goods store with a pitiable array of limp lettuce heads and shrivled vegetables, as well as a newspaper rack full of shilling shockers and other most unworthy types of literature. As we walked up the slight incline, Miss Redman consented at last, for me to take the basket from her, for, as she related to me between catching her breath, she had a slight heart ailment that was loathe to the encumbrance of heavy materials. Although, as she also was quick to assert, were it not for her ailment, she would certainly not stoop to allow any man such 'ridiculous chivalry', as she put it, which, as she said, should have gone out of fashion with the death of King Arthur. From this comment, I gathered the silly thing was a Suffragette and then decided that due to other rumours I had heard of her, but until this point not properly countenanced as they seemed altogether too outrageous to be true, she was probably an Abolitionist and (God in Heaven forbid!) a Communist into the bargain. Miss Redman jangled a heavy bunch of keys in her hand, signalling that we were shortly approaching her front door. She coughed nervously, gesturing that I should place the basket on the lid of the mail-box, which I did most gratefully as it was rather heavy, being full of large green apples - procured, no doubt, illegally from a tree belonging one of the stately and gracious homes she cleaned for a living. As I turned, I noted with a sinking feeling in the pit of my stomach that the rumours were true; she did indeed live across the road from a most lowly and common drinking tavern. I felt a flush of shame for her, heightened by the larking crowd of schoolboys who suddenly burst around the corner, like a flock of cockatoos at the sound of a shotgun, shouting all kinds of coarse words at each other. But Miss Redman seemed not to notice them, and, having at last got the door open, she turned and grabbed her basket, hastily gathering a few letters and a large flat parcel from the mail-box at the same time, ushering me inside and grabbing a-hold of my coat in her haste, shutting the door with a crude bang. Inside, all was dark, and I was surprised to note how completely such a flimsy front door shut out the clamour of the city streets. I followed Miss Redman blindly down a dusty and gloomy corridor, towards another, thicker, door, under which I could see the gentle flickering glow of warm yellow light.
The Notorious Miss Redman's Residence is Revealed
We alighted the horse-bus, Miss Redman doing so with some difficulty on account of the great basket she held on her arm; which she would on no account allow me to take charge of, insisting it was far too important to entrust to a middling creature such as myself. The sky was a dirty yellowish colour, hanging low, and the very streets seemed to gleam and glimmer with its reflection. The pavements were filled with garishly dressed, riotous, men and women; either homeward-bound factory workers or recent spectators at some football match. Whatever they were, they shouted and called to one another in a most familiar and colloqiol manner, causing other pedestrians to shake their heads and attempt to hurry past as quickly as possible, trying in vain to escape the boisterous exchanges. I was most shocked to note that Miss Redman had no such similar designs, and indeed seemed to revel in the crowds. Clutching her outlandish hat and her large, awkward, basket in one hand, and grabbing hold of my wrist in an outrageously familiar way with her other, she laughed while attempting to pull me through the ever-thickening throngs of people. Eventually we emerged at a side street, on the corner of which stood a shabby-looking dry-goods store with a pitiable array of limp lettuce heads and shrivled vegetables, as well as a newspaper rack full of shilling shockers and other most unworthy types of literature. As we walked up the slight incline, Miss Redman consented at last, for me to take the basket from her, for, as she related to me between catching her breath, she had a slight heart ailment that was loathe to the encumbrance of heavy materials. Although, as she also was quick to assert, were it not for her ailment, she would certainly not stoop to allow any man such 'ridiculous chivalry', as she put it, which, as she said, should have gone out of fashion with the death of King Arthur. From this comment, I gathered the silly thing was a Suffragette and then decided that due to other rumours I had heard of her, but until this point not properly countenanced as they seemed altogether too outrageous to be true, she was probably an Abolitionist and (God in Heaven forbid!) a Communist into the bargain. Miss Redman jangled a heavy bunch of keys in her hand, signalling that we were shortly approaching her front door. She coughed nervously, gesturing that I should place the basket on the lid of the mail-box, which I did most gratefully as it was rather heavy, being full of large green apples - procured, no doubt, illegally from a tree belonging one of the stately and gracious homes she cleaned for a living. As I turned, I noted with a sinking feeling in the pit of my stomach that the rumours were true; she did indeed live across the road from a most lowly and common drinking tavern. I felt a flush of shame for her, heightened by the larking crowd of schoolboys who suddenly burst around the corner, like a flock of cockatoos at the sound of a shotgun, shouting all kinds of coarse words at each other. But Miss Redman seemed not to notice them, and, having at last got the door open, she turned and grabbed her basket, hastily gathering a few letters and a large flat parcel from the mail-box at the same time, ushering me inside and grabbing a-hold of my coat in her haste, shutting the door with a crude bang. Inside, all was dark, and I was surprised to note how completely such a flimsy front door shut out the clamour of the city streets. I followed Miss Redman blindly down a dusty and gloomy corridor, towards another, thicker, door, under which I could see the gentle flickering glow of warm yellow light.
Read Comments (3) • Make a Comment
oldest to recent
.jpg)