I get the feeling sometimes with this blog that it's kinda like a distant memory. Every time I load the page I almost expect it to be like looking at pictures of an abandoned theme park, you know like there was so much joy but it's just been forgotten, an internet relic if you will.
I guess for me, this place is a memory of different times, in school specifically. Where we would all wait outside for each other and some afternoons just do random shit. Like go to Smaz's and swim or like chill in Darling Harbour. It's weird to come back to places like this and it's all still the same but things have also changed, like the layouts the same but we are all out of school now, and people who used to be frequent visitors like myself have sorta let it go a bit. It's not intentional I guess, just the passing of time.
(i'm gonna talk about being sick here so just like if you don't want to read that, it's cool, I don't want to be a burden)
(I'm really worried that you guys are going to ditch me for talking about this too much but I gotta tell someone about what's happening and how I feel and this seems to be the best place to do it.)
I guess being sick has brought back all these old memories for me. There are things I have sort of had to confront that I didn't think I would be doing until a lot later in life.
To be more concise than what I've been on facebook, basically when doctor's diagnose people with things, they go by an order of probability, the more common things they test for first because they are of course more common. Most things are diagnosed in the 1st-5th most common things, because that covers about 80-95% of cases, possibly more. By the time, you get to where I am currently, it starts hitting things that have probabilities of 0.01 or less percent. This means even the most common thing I might have, at my age has the word rare in front of it.
Rare things are not fun because with this, they include a variety of things that are actually really really awful.
The most awful as I said on facebook, are auto-immune diseases, and those are the things that have been most confronting about this situation. The waiting around has given me a lot of time to think and undeniably to stress. I know I shouldn't be but since this has kinda put my life on hold, it's hard not to think about the future. The longer it goes on, the less hope I have that I will make a full recovery basically (not medically, just personally, that is).
Anyway, the reason they are confronting is because they bring up an issue of mortality, because if I have one of them it will likely by the thing that kills me. Some of them, are not so bad, I could hope to live 90-100% of a normal life, if a bit difficult and yucky towards the end. Others give me 1 year to 3 years. They are undeniably what I fear most. Luckily they are also the most unlikely but I cannot deny, the experience has me stressed out. Confronting mortality is undeniably a difficult thing, I try not to think about it most of the time, and I have tried to play it down, because it is highly unlikely, like at my age, 1 in a million, but I don't know right now and it's very unsettling psychologically.
It's odd, I think about that and find myself hoping for something like epilepsy or chronic migraines. Which while not being fun in any sense, at least means I will live a mostly normal life, although I will probably have to be on constant medication and possibly a certain diet. I guess it gets to the point where anything is better than not knowing. The epilepsy is the most likely, although it's all low percentages now.
The testing at least feels like something is getting done although the MRI was traumatic, because it's so closed in and loud and I kept my eyes shut or I would have had a freak out. I thought about my writing and I managed to tune at least most of it out which was good.
On Friday I have to have an EEG which is a bunch of electrodes on my head. They will measure brain waves for 45 minutes and it's the thing that should either prove epilepsy or not.
On Tuesday, it's the ECG and it should tell me if there is a problem with my heart, I don't know what that does.
The worst part is not knowing, and going to the tests, I can't ask the testers, because they can't tell me. Literally they aren't allowed. They write a report, and show the difference but I can't know until the doctor sees the things. I'm assuming the blood tests were clear or I think they would have said. I honestly don't know.
When the attacks come, it's like my brain has gone haywire, it makes connections that don't exist in my vision and the colours go weird. I can't think properly and I get stuck on things, my brain is like a stuck record. There are these experiences where I feel like it's being filmed from my perspective but I'm not me. Sometimes I get headaches and sometimes my entire body jerks, sometimes I shake, or twitch and then my head jerks one way and it cracks my neck. Sometimes I can't get words out and I have to mime things to my mum, the word is sort of stuck between my brain and my vocal chords, I can see it, printed in my minds eye but I just can't say it. Sometimes I lie on the kitchen floor and wait for it to go away. Sometimes I cry at my desk when they come on because I just want to experience life normally again. Sometimes it's all too much and then I go and read the chat and it all feels better again. Having you guys in this whole thing, makes it tolerable. It's still awful but at least you guys are there. Then sometimes there is anxiety and I think what's the use of me, I can't leave the house, I can't drink, I can barely even spend time with you guys. I mean why are you still here? And sometimes I'm just waiting for you to be done with me and the illness. So I try to not talk about it, even though sometimes I can't think about anything else, because everytime I look away from the screen I can see the pattern of light from it on the walls and sky. Sometimes it's like that and sometimes it's ok.
(that kinda turned into a poem but it best describes what I'm going through)
The painting is good, it keeps me distracted from thinking about the possibilities but there was a bit of sadness last week where I learnt my grandparents think I'm a drug addict and that's why I'm sick, I'm not and mum told them so, but they think I'm lieing. They asked to see my paintings and I don't want to show them. I mean why should I show someone my work that disrespects me and doesn't trust me.
Anyway, it all has me a bit down right now, so yeah that's what's going on. I'm sorry that's all so intense but it's whirling round my head in down time and I just needed to get it out there. I don't want to dominate facebook newsfeed with it, because I don't want this to be the only thing I am right now, but I need to tell you guys, because really you deserve to know the truth, and I can't just keep pushing it down.
So thank you for reading. I will update again soon I guess.
I guess for me, this place is a memory of different times, in school specifically. Where we would all wait outside for each other and some afternoons just do random shit. Like go to Smaz's and swim or like chill in Darling Harbour. It's weird to come back to places like this and it's all still the same but things have also changed, like the layouts the same but we are all out of school now, and people who used to be frequent visitors like myself have sorta let it go a bit. It's not intentional I guess, just the passing of time.
(i'm gonna talk about being sick here so just like if you don't want to read that, it's cool, I don't want to be a burden)
(I'm really worried that you guys are going to ditch me for talking about this too much but I gotta tell someone about what's happening and how I feel and this seems to be the best place to do it.)
I guess being sick has brought back all these old memories for me. There are things I have sort of had to confront that I didn't think I would be doing until a lot later in life.
To be more concise than what I've been on facebook, basically when doctor's diagnose people with things, they go by an order of probability, the more common things they test for first because they are of course more common. Most things are diagnosed in the 1st-5th most common things, because that covers about 80-95% of cases, possibly more. By the time, you get to where I am currently, it starts hitting things that have probabilities of 0.01 or less percent. This means even the most common thing I might have, at my age has the word rare in front of it.
Rare things are not fun because with this, they include a variety of things that are actually really really awful.
The most awful as I said on facebook, are auto-immune diseases, and those are the things that have been most confronting about this situation. The waiting around has given me a lot of time to think and undeniably to stress. I know I shouldn't be but since this has kinda put my life on hold, it's hard not to think about the future. The longer it goes on, the less hope I have that I will make a full recovery basically (not medically, just personally, that is).
Anyway, the reason they are confronting is because they bring up an issue of mortality, because if I have one of them it will likely by the thing that kills me. Some of them, are not so bad, I could hope to live 90-100% of a normal life, if a bit difficult and yucky towards the end. Others give me 1 year to 3 years. They are undeniably what I fear most. Luckily they are also the most unlikely but I cannot deny, the experience has me stressed out. Confronting mortality is undeniably a difficult thing, I try not to think about it most of the time, and I have tried to play it down, because it is highly unlikely, like at my age, 1 in a million, but I don't know right now and it's very unsettling psychologically.
It's odd, I think about that and find myself hoping for something like epilepsy or chronic migraines. Which while not being fun in any sense, at least means I will live a mostly normal life, although I will probably have to be on constant medication and possibly a certain diet. I guess it gets to the point where anything is better than not knowing. The epilepsy is the most likely, although it's all low percentages now.
The testing at least feels like something is getting done although the MRI was traumatic, because it's so closed in and loud and I kept my eyes shut or I would have had a freak out. I thought about my writing and I managed to tune at least most of it out which was good.
On Friday I have to have an EEG which is a bunch of electrodes on my head. They will measure brain waves for 45 minutes and it's the thing that should either prove epilepsy or not.
On Tuesday, it's the ECG and it should tell me if there is a problem with my heart, I don't know what that does.
The worst part is not knowing, and going to the tests, I can't ask the testers, because they can't tell me. Literally they aren't allowed. They write a report, and show the difference but I can't know until the doctor sees the things. I'm assuming the blood tests were clear or I think they would have said. I honestly don't know.
When the attacks come, it's like my brain has gone haywire, it makes connections that don't exist in my vision and the colours go weird. I can't think properly and I get stuck on things, my brain is like a stuck record. There are these experiences where I feel like it's being filmed from my perspective but I'm not me. Sometimes I get headaches and sometimes my entire body jerks, sometimes I shake, or twitch and then my head jerks one way and it cracks my neck. Sometimes I can't get words out and I have to mime things to my mum, the word is sort of stuck between my brain and my vocal chords, I can see it, printed in my minds eye but I just can't say it. Sometimes I lie on the kitchen floor and wait for it to go away. Sometimes I cry at my desk when they come on because I just want to experience life normally again. Sometimes it's all too much and then I go and read the chat and it all feels better again. Having you guys in this whole thing, makes it tolerable. It's still awful but at least you guys are there. Then sometimes there is anxiety and I think what's the use of me, I can't leave the house, I can't drink, I can barely even spend time with you guys. I mean why are you still here? And sometimes I'm just waiting for you to be done with me and the illness. So I try to not talk about it, even though sometimes I can't think about anything else, because everytime I look away from the screen I can see the pattern of light from it on the walls and sky. Sometimes it's like that and sometimes it's ok.
(that kinda turned into a poem but it best describes what I'm going through)
The painting is good, it keeps me distracted from thinking about the possibilities but there was a bit of sadness last week where I learnt my grandparents think I'm a drug addict and that's why I'm sick, I'm not and mum told them so, but they think I'm lieing. They asked to see my paintings and I don't want to show them. I mean why should I show someone my work that disrespects me and doesn't trust me.
Anyway, it all has me a bit down right now, so yeah that's what's going on. I'm sorry that's all so intense but it's whirling round my head in down time and I just needed to get it out there. I don't want to dominate facebook newsfeed with it, because I don't want this to be the only thing I am right now, but I need to tell you guys, because really you deserve to know the truth, and I can't just keep pushing it down.
So thank you for reading. I will update again soon I guess.
3 comments:
Emilyyyy thats nuts hey. Man it must be so frustrating for you but just hold hope and you'll be ok!
It's just a matter of a few weeks at most until the doctors finally get to tell you whatsup right? Until then just try your best to stay sane, and call us if you ever need want anything, like seriously ANYTHING.
I know it might sound stupid but having all that freetime is actually really awesome. I wish i was there and not stressing for exams and stuff, thinking about next year and whether im sadistic enough to start a new semester troubles me...
Hey emily. You are never a burden. Don t hold back if you need to share anything cause we here for you all days most hours. Here or the facebook thing, no one thinks you're a burden. I mean yea we are worried about you but who wouldn't be. You mean a ton to us so you talking about morbid stuff, yea it scares me but you can't help and feel that way. But you know what, its going to be okay. You'll find out what's the cause of all these madness and you'll get better. Maybe one day you'll wake up and be ok.
And its crazy to think about what your going through. I mean with all the uncertainty and the whole 'this life turned out nothing like I had planned' thing so dont worry about feeling like a burden or stupid things like that. We ain't gonna be burdened. I ain't going through 1% of the shit you seen.
One person can't handle all that so just spread it around. And be positive. Maybe you'll find your calling of being a painter and get well and be super famous and at last something came out of it.
Stay strong. Xx
(I also think people forget about this place too)
(i come here more often than any other website)
hogg! hOOGGGGG!!! dont think that way! we're all your nakama and we'll never leave you for anything let alone something so out of anyone's control!
i guess all these tests must be concerning just the idea of taking tests that are used as diagnostic tools for serious illnesses, that's pretty scary. but its ok if you look at the probability. i know its easy to focus on the scary stuff because they are an option but the chance is so so so low, you'll be fine! and whatever the outcome, it'll be alright :)we'll help you overcome anything.
i hope you'll try to not feel so insecure and believe in us! you're awesome and we're all gonna be tomodatchis for life so dont worry about that!
i hope this makes you feel a little better. you're dabes 5ever
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