Hi all!
It's past midnight on Monday as I'm writing this, but as I'm wide awake, I figured I'd write a blog post.
Maths, Study & Revision:
On Saturday I had maths tutoring from 2pm-5.30pm, then studied from 5.40pm-8.50pm. I rested in bed until midnight, when I got up and decided to revise some more, and specifically, to complete all my required cheatsheets. So I worked until 3am when I developed terrible nausea (which needed Ondansetron) and a shocking headache, which became a migraine later.
I can justify writing this post because: I have completed every cheatsheet for my maths bound reference.
All that's left is a cheatsheet with examples of how to draw various graphs, etc. and choosing which solutions from past paper exams to include. I also have to ask my teacher to come out to my house to help me with my calculator; often, when I try to solve complex equations, I get an answer like: 72e^4x@5. Which is of no help whatsoever!
Terrible luck!
On Saturday 16/10, I woke with a terrible headache, and later developed severe nausea which required Ondansetron. I still completed maths tutoring and studied, but the next day I woke with a terrible virus: cough, aches, pains, fever, chills, runny/blocked nose and an upset stomach. I lost 2kg in 3 days, simply because I couldn't eat! I felt better on Friday 22/10, and had tutoring on Saturday, as previously mentioned.
Unfortunately, today I feel worse. I'd say it's a combination of things: no sleep until 8am on Sunday, due to the migraine, getting only 4hrs broken sleep, still slowly recovering from the virus, and switching meds. So the entire week I was incredibly ill, (bed bound & requiring help to move from one room to another) I was unable to do any study. Which is why I compensated by studying for 9hrs on Saturday, as mentioned above.
Unfortunately, the marathon study session means that I'll be incredibly exhausted for quite a while, but I must press on; I have many past paper exams to do. My real exams are on the 05/11/10 and the 08/11/10.
Medications:
MS Contin wasn't working very well, even at 40mg twice a day, so my doctor has switched me to OxyNorm. Would you believe that anorexia is a very common side effect of OxyNorm?! I'm already at risk, due to my disordered eating, (apparently) severely distorted body image, and my history. I went through a stage of "starving" myself. And I lost 12kgs in 8 weeks. So I think my Mum will be watching me, because although I want to get into shape, (which is impossible when I'm this ill) I don't need another illness, or more complications, or more doctors! I've been on it for a few days, and I think I'll need a higher dose; 10mg twice daily just isn't cutting it. But it's 100000000x better than MS Contin!! If only they'd give me something to sleep! ALEX. NEEDS. SLEEP. (It's nearly 4am! ... This is an edit.)
I think I'll write a second post so that these are easier to read. Please comment, if you feel so inclined; I love feedback, and it cheers me up when I'm stuck in bed to see an email saying "new comment" =) Take care. xoxo
Showing posts with label M.E.. Show all posts
Showing posts with label M.E.. Show all posts
Monday, October 25, 2010
Friday, October 15, 2010
Hi!
I'm back!
I was finally able to log on to my laptop for the first time in ages. (Seriously, the last time I could use it was when I wrote the previous blog post!) So, I guess an update first, right? Here goes:
I'm becoming more disabled each day. I wasn't able to study until this Wednesday, and I sat my 2 hour 20mins practice exam. (Not incl. reading time of 15mins!) I finished in the allotted time, felt I couldn't take any breaks, and didn't move from the same position the whole time. It's what I do when I'm hyper-stressed. So, of course, I finish, correct it (and find I got a damn good score, considering I can barely study) and then move. And I nearly collapsed! My whole back and neck had seized up and were intensely painful, plus my left hand was cramping and shaking. I wish I could sit my maths exams on laptops; I never felt this bad after my German practice exams/real exams last year! So I had a really hot shower, which helped my chills and pain, plus I wasn't feeling so much like I had the flu by then.
I seem to feel like I've been hit with a flu as soon as I've pushed too far past my limits. It's scary; I worry every time it happens that it's an actual flu or virus! I've barely been able to get out of bed this past week. And small things, like helping out by making food for my Mum and younger brother, (they've both had a terrible flu until today) or getting myself dressed make me absolutely exhausted, dizzy and weak. And not my normal level of exhaustion; this is the sort of exhaustion that makes me wonder if I can keep living, or if I'll just end up trapped in bed. Forever.
These illnesses, their severity, and the fact that virtually no one believes that Fibromyalgia or ME/CFS exist, all terrify me. If people understood, my life would almost be worth living.
More study. Ew.
It's past 1am on Friday now, and today I really need to do cheatsheets for Linear, Quadratics, Cubics/Quartics, Higher Order Polynomials/Gallery of Graphs. I can use bits and pieces from older cheatsheets, but I do need to do a Quadratics one from scratch, and maybe redo the Linear and Cubics/Quartics one.
... But I alsowant need to escape my bed, and go out. I hate being sick! Words can't describe it anymore. Hm... I really, desperately need to get my fringe cut, so maybe I could look at a few stores after? I'd rather do that than wind up in heaps of pain 'cause I studied too much!
***The goLITEBLU is meant to regulate your body clock, so you sleep, wake, and eat at normal times. It also should make you "happy and energetic." It's given me migraines, Ondansetron-worthy nausea, and made me so sleepy that I've had to triple my dose of wakefulness meds, on my doctor's orders. It also made me starving all day long, but then made me feel sick as soon as I ate.
Thanks for reading! I hope I improve soon, so I can study, and maybe even blog. I'm dying to take pics and post them. (Pics of my recent purchases, including a summer-y dress!)
Alex. xoxo
I was finally able to log on to my laptop for the first time in ages. (Seriously, the last time I could use it was when I wrote the previous blog post!) So, I guess an update first, right? Here goes:
- The goLITEBLU*** was a disaster. After two migraines that lasted 7-10 days, my sleep clinician said to try the goLITEBLU again, but if I got another long migraine, then I shouldn't keep using it. So I tried it.
- After 4 days of a migraine, my Mum decided to take me to the ER. (I didn't want to go, as I figured they wouldn't help me if MS Contin wasn't working.) I spent hours curled up on a couch, (not at a children's hospital anymore >.<) before I finally got seen by a doctor and was given a bed. I had to fight for morphine, they wanted to give me Largactil, but that causes me HEADACHES!! So I had IV re-hydration, an injection of morphine and an injection of Ondansetron. After 9hrs in the ER, including wait time, (at a private hospital!) I went home. I had McDonald's drive through on the way back, to celebrate being migraine free for the first time in nearly 2wks! ^.^
- I'm no longer using the goLITEBLU. I can't believe the sleep clinician didn't even ask if there was a family history of migraines before telling me to use it. (The brochure warns of initial nausea and headaches.) There's migraines on both sides of the family, plus my Mum, my father, younger brother and I get them!
- I got a virus the next day, (Wed, 06/10/10) so I was on bed rest for the next 5 days. Except for the Saturday, (09/10/10) when I had 3hrs of maths tutoring. I couldn't stick to my sleep routine, let alone sleep hygiene when I felt so ill!
I'm becoming more disabled each day. I wasn't able to study until this Wednesday, and I sat my 2 hour 20mins practice exam. (Not incl. reading time of 15mins!) I finished in the allotted time, felt I couldn't take any breaks, and didn't move from the same position the whole time. It's what I do when I'm hyper-stressed. So, of course, I finish, correct it (and find I got a damn good score, considering I can barely study) and then move. And I nearly collapsed! My whole back and neck had seized up and were intensely painful, plus my left hand was cramping and shaking. I wish I could sit my maths exams on laptops; I never felt this bad after my German practice exams/real exams last year! So I had a really hot shower, which helped my chills and pain, plus I wasn't feeling so much like I had the flu by then.
I seem to feel like I've been hit with a flu as soon as I've pushed too far past my limits. It's scary; I worry every time it happens that it's an actual flu or virus! I've barely been able to get out of bed this past week. And small things, like helping out by making food for my Mum and younger brother, (they've both had a terrible flu until today) or getting myself dressed make me absolutely exhausted, dizzy and weak. And not my normal level of exhaustion; this is the sort of exhaustion that makes me wonder if I can keep living, or if I'll just end up trapped in bed. Forever.
These illnesses, their severity, and the fact that virtually no one believes that Fibromyalgia or ME/CFS exist, all terrify me. If people understood, my life would almost be worth living.
More study. Ew.
It's past 1am on Friday now, and today I really need to do cheatsheets for Linear, Quadratics, Cubics/Quartics, Higher Order Polynomials/Gallery of Graphs. I can use bits and pieces from older cheatsheets, but I do need to do a Quadratics one from scratch, and maybe redo the Linear and Cubics/Quartics one.
... But I also
***The goLITEBLU is meant to regulate your body clock, so you sleep, wake, and eat at normal times. It also should make you "happy and energetic." It's given me migraines, Ondansetron-worthy nausea, and made me so sleepy that I've had to triple my dose of wakefulness meds, on my doctor's orders. It also made me starving all day long, but then made me feel sick as soon as I ate.
Thanks for reading! I hope I improve soon, so I can study, and maybe even blog. I'm dying to take pics and post them. (Pics of my recent purchases, including a summer-y dress!)
Alex. xoxo
Friday, October 1, 2010
I'm not dead... Yet!
Hi everyone!
It's been quite a while since I last blogged, and to be honest, I haven't used my laptop for nearly a fortnight. I decided to use it tonight basically because I wanted to watch a movie, and I was too tired to sit in the lounge room. I've had a headache since Saturday, and when I rang both of my doctors the other day, they said I could stay in bed and sleep whenever I needed to, until this headache goes away. I also don't have to use the blue light while the headache is here, either. There's something that's odd/worrying: no one has ever heard of severe ongoing headaches and nausea being side effects of using a goLITEBLU, or incredible sleepiness. I've had to up my wakefulness meds twice simply to keep myself awake after using the blue light! The sleep clinician said if I get another headache like this, (ie. longer than one day and no painkillers work) then we'll have to stop the blue light treatment. I think they're worried... =|
An outing!!
I did manage to go out on Sunday. You know my wallet I got? The one I posted pics of in the last post? Well, it broke. So I took it back, exchanged it for another one, and bought some clothes, too. I got a pretty summery dress! I'll take some pics and post them when I'm feeling better, though. Guess what? I got a great wallet; I chose a black one, a different style, one that was more solid, then went to look at clothes. When they were putting through my purchases, they put a brown wallet in the box. I didn't notice until I got home! So I'm waiting until Mum has time to go back and swap it... I am so lucky I kept my old wallet, otherwise I'd be without one!
A short health update:
I'm feeling sicker and more drained with each passing day. My sleep is getting worse, and I'm needing more. Of course, I'm not allowed to get the sleep I need; I have to go to bed at 3.30am, or 2am at the earliest, and get up at 12.30pm. Currently, I need 12hrs in bed to avoid intense pain and nausea. So I'm annoyed. And this headache has me in a worse mood than usual!
I hate distance education. So. Much.
My homework for this week and next week hasn't arrived. I've contacted my distance education teacher 3 times, and she hasn't responded. I'll work on my cheatsheets as soon as my head is better, and maybe work through some Checkpoints questions. But if I'm too sick to complete the practice exams, whenever they get sent out, it's not my fault. They can't fail me, and it's their problem. So there.
What is wrong with this country?!
I had maths tutoring while the AFL Grand Final was on last Saturday, and it was a draw!! I think that's the third time it's happened. Ever. So there's a "replay" (rematch) this Saturday, and my tutor can't come, so I'll probs watch it. Provided I'm feeling better! So, we couldn't decide on a government, the Grand Final was a draw, and they announced the wrong winner on ANTM. (Australia's Next Top Model) Australia, no more decisions for you! It's been a year of indecision, to say the least.
So that's it for the moment. I really hope to post pics of my purchases ASAP, but I'd rather have all my cheatsheets and hw completed. Just for peace of mind. I hope everyone is as well as possible! Alex. xoxo
It's been quite a while since I last blogged, and to be honest, I haven't used my laptop for nearly a fortnight. I decided to use it tonight basically because I wanted to watch a movie, and I was too tired to sit in the lounge room. I've had a headache since Saturday, and when I rang both of my doctors the other day, they said I could stay in bed and sleep whenever I needed to, until this headache goes away. I also don't have to use the blue light while the headache is here, either. There's something that's odd/worrying: no one has ever heard of severe ongoing headaches and nausea being side effects of using a goLITEBLU, or incredible sleepiness. I've had to up my wakefulness meds twice simply to keep myself awake after using the blue light! The sleep clinician said if I get another headache like this, (ie. longer than one day and no painkillers work) then we'll have to stop the blue light treatment. I think they're worried... =|
An outing!!
I did manage to go out on Sunday. You know my wallet I got? The one I posted pics of in the last post? Well, it broke. So I took it back, exchanged it for another one, and bought some clothes, too. I got a pretty summery dress! I'll take some pics and post them when I'm feeling better, though. Guess what? I got a great wallet; I chose a black one, a different style, one that was more solid, then went to look at clothes. When they were putting through my purchases, they put a brown wallet in the box. I didn't notice until I got home! So I'm waiting until Mum has time to go back and swap it... I am so lucky I kept my old wallet, otherwise I'd be without one!
A short health update:
I'm feeling sicker and more drained with each passing day. My sleep is getting worse, and I'm needing more. Of course, I'm not allowed to get the sleep I need; I have to go to bed at 3.30am, or 2am at the earliest, and get up at 12.30pm. Currently, I need 12hrs in bed to avoid intense pain and nausea. So I'm annoyed. And this headache has me in a worse mood than usual!
I hate distance education. So. Much.
My homework for this week and next week hasn't arrived. I've contacted my distance education teacher 3 times, and she hasn't responded. I'll work on my cheatsheets as soon as my head is better, and maybe work through some Checkpoints questions. But if I'm too sick to complete the practice exams, whenever they get sent out, it's not my fault. They can't fail me, and it's their problem. So there.
What is wrong with this country?!
I had maths tutoring while the AFL Grand Final was on last Saturday, and it was a draw!! I think that's the third time it's happened. Ever. So there's a "replay" (rematch) this Saturday, and my tutor can't come, so I'll probs watch it. Provided I'm feeling better! So, we couldn't decide on a government, the Grand Final was a draw, and they announced the wrong winner on ANTM. (Australia's Next Top Model) Australia, no more decisions for you! It's been a year of indecision, to say the least.
So that's it for the moment. I really hope to post pics of my purchases ASAP, but I'd rather have all my cheatsheets and hw completed. Just for peace of mind. I hope everyone is as well as possible! Alex. xoxo
Tuesday, September 7, 2010
Government!
Government!
Today, the Independents, Oakeshott, Windsor and Katter announced who they would be supporting to form Government. Oakeshott and Windsor are supporting Labor, along with Wilkie, and the Greens MP Adam Bandt. This gives Labor a 76-74 majority in order to form Government. Katter announced he was supporting the Coalition earlier today. I think it will be an interesting time, as having a Greens MP means that there should be more focus on key issues such as an ETS, and hopefully the rights of asylum seekers, etc.
I don't know if I've mentioned that I wrote to Julia Gillard (okay, emailed from my iPhone) about the support and research that the ME/CFS community need in Australia. Anyway, I got a response shortly before the election, in writing. Unfortunately, it wasn't from an MP, but someone who works in the Department of Health & Ageing, as the Government was in caretaker mode due to the election being called. I called the person, who was a nice guy, and he said to write again, after the election, to whoever is the relevant person, basically saying the same things. This person had pointed out that ME/CFS Australia was a useful resource, and I said it was, but we need more support, and above all, awareness. I'm going to make a request for an MP (preferably all of them) to either wear a blue or purple ribbon on May 12th. Politicians wear awareness ribbons for everything from the violence against women campaign to the bushfire relief fund. I don't think it's a big ask.
An outing:
After my Year 11 formal (2008) I got some make-up, a first for me, because back then I was practically full-time at school, and feeling really healthy. I was also keeping up 3 extra-curriculars, plus work with a charity. I used the make-up once after I bought it, for a family portrait. I've never needed it since! As it's a powder/mineral foundation, or whatever you call it, it should last for ages. So it's not like I've wasted money, I'm just annoyed I never really got to use it.
Back to school soon!
I've been in contact with my school, and I've selected Literature and Legal Studies as my two subjects for Orientation (in the last two weeks of November) and for next year. (My final year of Year 12.) I'm really looking forward to it, and the school should have reinstated my email account by now, so the prospective subject teachers will be in contact with me. (The Legal Studies teacher is the same as always, but there are two teachers who could take Lit.) The great thing is that the teachers can email me before the booklist is finalised and released, with a list of possible books. That way I can read the books, if we've got them at home. (Mum studied English Lit at uni, so we've got a massive home library.)
I hope we don't have to read Jane Austen. But I'm really looking forward to studying Shakespeare. And I'd love it if they switched Bruce Dawe's "Sometimes Gladness" collection of poetry from English to Lit. Bruce Dawe is very accessible, and has written some lovely poems. I find Shakespeare accessible and quite easy to understand, which has astounded everyone, including my Mum. You'd think the brain fog would affect my ability to process Shakespeare or poetry, but it hasn't! It's really affected my memory and attention span, though. The two teachers who might be taking Lit have both taught me before I was really ill, so they are more likely to be lenient with my homework load, marking, and already understand ME/CFS. I'll just have to explain Fibro to them. The Legal Studies teacher also taught me earlier, so that's good for the same reasons.
Also...
I'm not sure if I'll be able to blog a lot in the near future, as I have exams in the first week of November. This week I have to sit a 110min practice exam. Next week I've got the probability analysis assignment, and then I have practice exams basically every week until the end of October! I did manage to get the probability cheatsheet done, but I ended up doing it on the weekend with my maths tutor.
I've got to do a cheatsheet for every topic in maths: calculus, trigonometry, linear functions, quadratic functions, cubic functions, quartic functions, transformations & drawing of graphs, matrices, and of course, how to use my CAS calculator! I think that's about it, and luckily I've got cheatsheets to draw on from Year 10 and 11, but I have to add a lot to them; this subject gets a lot more complex in Year 12!
So, if I suddenly don't blog for a fortnight or something, the odds are I'm exhausted from study, overwhelmed from study, or can't study or do anything! (Hopefully it's one of the first two, I don't want to be too ill to study.) If anyone has study tips, or ideas on how to relax before exams, I'd love to hear them. I have sat exams before, but maths always causes more anxiety for me, as it's always been my weakness.
Thanks for reading, and I do welcome feedback! I hope I can keep blogging next year, despite the fact I'll be studying two subjects. Alex. xoxo
Today, the Independents, Oakeshott, Windsor and Katter announced who they would be supporting to form Government. Oakeshott and Windsor are supporting Labor, along with Wilkie, and the Greens MP Adam Bandt. This gives Labor a 76-74 majority in order to form Government. Katter announced he was supporting the Coalition earlier today. I think it will be an interesting time, as having a Greens MP means that there should be more focus on key issues such as an ETS, and hopefully the rights of asylum seekers, etc.
I don't know if I've mentioned that I wrote to Julia Gillard (okay, emailed from my iPhone) about the support and research that the ME/CFS community need in Australia. Anyway, I got a response shortly before the election, in writing. Unfortunately, it wasn't from an MP, but someone who works in the Department of Health & Ageing, as the Government was in caretaker mode due to the election being called. I called the person, who was a nice guy, and he said to write again, after the election, to whoever is the relevant person, basically saying the same things. This person had pointed out that ME/CFS Australia was a useful resource, and I said it was, but we need more support, and above all, awareness. I'm going to make a request for an MP (preferably all of them) to either wear a blue or purple ribbon on May 12th. Politicians wear awareness ribbons for everything from the violence against women campaign to the bushfire relief fund. I don't think it's a big ask.
An outing:
Sunday was Father's Day, and I went out with my father and younger brother to a shopping centre, and got a new wallet, as my old one was falling apart, and also to take my father out to lunch. We went to the Pancake Parlour, and it was really busy, so I found the whole experience very tiring and overwhelming. Still I was happy with the wallet I got, and I saw a few different things in the store that I liked. I'm hoping to go back with Mum this week. Mum actually gives opinions on how something looks! Clothes shopping, etc. with my father is pointless. Like most guys, he'll say "that looks good" to anything, just so we can leave the store!
 |
| Inside view of my new Roxy wallet. |
 |
| Outside view of my new Roxy wallet. |
 |
| My new pink lip gloss. |
I also went to a shopping centre last week with Mum, as she wanted to pick up something from the Clinique counter. I got a lip gloss, and it's a nice shade of pink. I haven't used it yet, but I looked at the testers, and it'll really suit me. It's sort of a pen-type one, you twist one end, and the lip gloss is pushed up to the brush. It's not messy, and it's easy to use.
Back to school soon!
I've been in contact with my school, and I've selected Literature and Legal Studies as my two subjects for Orientation (in the last two weeks of November) and for next year. (My final year of Year 12.) I'm really looking forward to it, and the school should have reinstated my email account by now, so the prospective subject teachers will be in contact with me. (The Legal Studies teacher is the same as always, but there are two teachers who could take Lit.) The great thing is that the teachers can email me before the booklist is finalised and released, with a list of possible books. That way I can read the books, if we've got them at home. (Mum studied English Lit at uni, so we've got a massive home library.)
I hope we don't have to read Jane Austen. But I'm really looking forward to studying Shakespeare. And I'd love it if they switched Bruce Dawe's "Sometimes Gladness" collection of poetry from English to Lit. Bruce Dawe is very accessible, and has written some lovely poems. I find Shakespeare accessible and quite easy to understand, which has astounded everyone, including my Mum. You'd think the brain fog would affect my ability to process Shakespeare or poetry, but it hasn't! It's really affected my memory and attention span, though. The two teachers who might be taking Lit have both taught me before I was really ill, so they are more likely to be lenient with my homework load, marking, and already understand ME/CFS. I'll just have to explain Fibro to them. The Legal Studies teacher also taught me earlier, so that's good for the same reasons.
Also...
I'm not sure if I'll be able to blog a lot in the near future, as I have exams in the first week of November. This week I have to sit a 110min practice exam. Next week I've got the probability analysis assignment, and then I have practice exams basically every week until the end of October! I did manage to get the probability cheatsheet done, but I ended up doing it on the weekend with my maths tutor.
I've got to do a cheatsheet for every topic in maths: calculus, trigonometry, linear functions, quadratic functions, cubic functions, quartic functions, transformations & drawing of graphs, matrices, and of course, how to use my CAS calculator! I think that's about it, and luckily I've got cheatsheets to draw on from Year 10 and 11, but I have to add a lot to them; this subject gets a lot more complex in Year 12!
So, if I suddenly don't blog for a fortnight or something, the odds are I'm exhausted from study, overwhelmed from study, or can't study or do anything! (Hopefully it's one of the first two, I don't want to be too ill to study.) If anyone has study tips, or ideas on how to relax before exams, I'd love to hear them. I have sat exams before, but maths always causes more anxiety for me, as it's always been my weakness.
Thanks for reading, and I do welcome feedback! I hope I can keep blogging next year, despite the fact I'll be studying two subjects. Alex. xoxo
Sunday, August 29, 2010
Health update
Health update:
It's been a while since I've blogged about how things are going, so I figured I'd write an update, for those who are interested.
I stopped the Lyrica quite a while ago, maybe 5 days after I started taking it. It wasn't helping, at all, and the side effects were annoying. I'm now on MS Contin, which didn't help at 1 tablet a day, helped a little at 2 tablets a day, and one day I had unbelievable pain, I couldn't move, so I tried a third. And my pain just disappeared. I did feel a little disoriented/spacey, but anything is worth it if I'm pain free! I also slept very deeply for the first 3hrs that night. So I need to contact my doctor [consultant physician] again, (we're working out the right dose, increasing in the smallest increments possible as necessary) and let him know that 3 tablets a day, spread out from when I first get up until late evening is enough to kill pain.
Sleep hygeine/getting up at the same time each day:
I'm still getting up at 1pm each day, because my sleep pattern hasn't adjusted yet, and I've had to get up at different times the past week (9am, 11am, etc.) so I think my body is just really confused as to when it's meant to sleep! I'll move it back to 12.45pm or 12.30pm as soon as I've adjusted to the change. It's really difficult, because my meds that are supposed to keep me awake don't work well enough anymore. I've never taken them daily, because I've never had enough, but now I'm just so desperately in need of sleep that I could fall asleep if I lay down, even for a minute. So I can't lie down, unless my pain is really bad, enough that I can't sit up or move.
I doubt I'll ever be able to get up at 9am every day. I know I'll have to get up early some days for school in November and next year, but it's different; if you're getting up at 9am when you're at home, there is nothing to do. I'm too sick and sleepy/exhausted to study, which leaves watching tv or going on the internet. They're all nice things, but from 9am-11pm? No thanks. Even if you add in reading, writing and tidying my room, I'd be so tired that I'd need a nap. But I'm not allowed to nap. I think on weekends I should be allowed to sleep in, until midday at the latest, but eventually I'd hope to get up by 11am.
Weird. Why am I more awake some days than others?
I seem to be more awake and alert when I know I have to do something/be somewhere. For instance, yesterday I got up at 1pm, took my meds, made my bed, got dressed, etc. and was sleepy the whole day. Today, I had maths tutoring, and I got up at 12.45pm, was a little awake and alert before my meds, and am still quite awake now, after 9pm. It's the same with school, (except the 6.30am starts) I only struggle with breakfast, because I'm not hungry in the mornings, but if I don't eat a lot, I'll be starving in the middle of my first class. I am allowed to eat in class, but it's awkward... Like I'm drawing more attention to myself. So I eat a big breakfast (usually curry and rice, or spaghetti bolognese, or something filling) and then am so stressed by school that I can usually only manage a bit of rice or a sandwich with some water for the rest of the day. Then I get home, and am de-stressed, and immediately starving!
Pain:
My pain has got worse; I read in the paper that it's been the wettest year since the drought began, and it's a colder, more bitter winter than last year. This explains my pain. But now my knees seize up, and my ankles hurt terribly, and I get awful rheumatism-like pain in my limbs. The joints are the worst. I really hate leaving the house now, because as soon as I do, it's instant pain. And the pain doesn't go away until I'm really warm and have taken enough painkillers. A lot of nights it keeps me awake. Thankfully we got an inverted heater/cooler installed in my room, and we got a grant to cover part of it, (as I can't regulate my body temperature) so now I can warm up my room and stay warmer. My new quilt is also super warm, and all of these things help with the pain. Heat packs are great, too.
Does anyone else get this sort of pain, or have tips to minimise or cope with it?
Sleep...
My sleep hasn't figured itself out yet. Some nights I sleep okay, other nights I'm awake until 6am, then wake hourly, not to mention when my younger brother gets up and gets ready for school. That's usually from 7.30am-8.40am. If I could sleep from 11pm, it'd be fine. But I can't, and I need more sleep than I ever have: 10-12hrs a night, just to minimise my pain and so that I'm not sleepy all day. I just hope my sleep will improve before my exams!
Well, that's about it! If there are any other things you'd like to know about, comment, and I'll respond. Thanks for reading! Alex. xoxo
It's been a while since I've blogged about how things are going, so I figured I'd write an update, for those who are interested.
I stopped the Lyrica quite a while ago, maybe 5 days after I started taking it. It wasn't helping, at all, and the side effects were annoying. I'm now on MS Contin, which didn't help at 1 tablet a day, helped a little at 2 tablets a day, and one day I had unbelievable pain, I couldn't move, so I tried a third. And my pain just disappeared. I did feel a little disoriented/spacey, but anything is worth it if I'm pain free! I also slept very deeply for the first 3hrs that night. So I need to contact my doctor [consultant physician] again, (we're working out the right dose, increasing in the smallest increments possible as necessary) and let him know that 3 tablets a day, spread out from when I first get up until late evening is enough to kill pain.
Sleep hygeine/getting up at the same time each day:
I'm still getting up at 1pm each day, because my sleep pattern hasn't adjusted yet, and I've had to get up at different times the past week (9am, 11am, etc.) so I think my body is just really confused as to when it's meant to sleep! I'll move it back to 12.45pm or 12.30pm as soon as I've adjusted to the change. It's really difficult, because my meds that are supposed to keep me awake don't work well enough anymore. I've never taken them daily, because I've never had enough, but now I'm just so desperately in need of sleep that I could fall asleep if I lay down, even for a minute. So I can't lie down, unless my pain is really bad, enough that I can't sit up or move.
I doubt I'll ever be able to get up at 9am every day. I know I'll have to get up early some days for school in November and next year, but it's different; if you're getting up at 9am when you're at home, there is nothing to do. I'm too sick and sleepy/exhausted to study, which leaves watching tv or going on the internet. They're all nice things, but from 9am-11pm? No thanks. Even if you add in reading, writing and tidying my room, I'd be so tired that I'd need a nap. But I'm not allowed to nap. I think on weekends I should be allowed to sleep in, until midday at the latest, but eventually I'd hope to get up by 11am.
Weird. Why am I more awake some days than others?
I seem to be more awake and alert when I know I have to do something/be somewhere. For instance, yesterday I got up at 1pm, took my meds, made my bed, got dressed, etc. and was sleepy the whole day. Today, I had maths tutoring, and I got up at 12.45pm, was a little awake and alert before my meds, and am still quite awake now, after 9pm. It's the same with school, (except the 6.30am starts) I only struggle with breakfast, because I'm not hungry in the mornings, but if I don't eat a lot, I'll be starving in the middle of my first class. I am allowed to eat in class, but it's awkward... Like I'm drawing more attention to myself. So I eat a big breakfast (usually curry and rice, or spaghetti bolognese, or something filling) and then am so stressed by school that I can usually only manage a bit of rice or a sandwich with some water for the rest of the day. Then I get home, and am de-stressed, and immediately starving!
Pain:
My pain has got worse; I read in the paper that it's been the wettest year since the drought began, and it's a colder, more bitter winter than last year. This explains my pain. But now my knees seize up, and my ankles hurt terribly, and I get awful rheumatism-like pain in my limbs. The joints are the worst. I really hate leaving the house now, because as soon as I do, it's instant pain. And the pain doesn't go away until I'm really warm and have taken enough painkillers. A lot of nights it keeps me awake. Thankfully we got an inverted heater/cooler installed in my room, and we got a grant to cover part of it, (as I can't regulate my body temperature) so now I can warm up my room and stay warmer. My new quilt is also super warm, and all of these things help with the pain. Heat packs are great, too.
Does anyone else get this sort of pain, or have tips to minimise or cope with it?
Sleep...
My sleep hasn't figured itself out yet. Some nights I sleep okay, other nights I'm awake until 6am, then wake hourly, not to mention when my younger brother gets up and gets ready for school. That's usually from 7.30am-8.40am. If I could sleep from 11pm, it'd be fine. But I can't, and I need more sleep than I ever have: 10-12hrs a night, just to minimise my pain and so that I'm not sleepy all day. I just hope my sleep will improve before my exams!
Well, that's about it! If there are any other things you'd like to know about, comment, and I'll respond. Thanks for reading! Alex. xoxo
Wednesday, July 21, 2010
Hospitals
My hospital/specialist visit.
I saw my specialist on Monday, who was not of much help. I've been put on a new medication for my back spasms, but I can only take it at night. She won't help with the rest of my pain, my insomnia, or sleep pattern. Apparently it could take over a year for this sleep regime and sleep hygeine to begin to work. I really don't believe much, if anything of what doctors tell me. They've lied to me enough for me to lose faith in them completely.
I got given another dose of vitamin D supplement, it's a liquid oily thing, which tastes horrid. The last time I had it I nearly threw up in my specialist's office, she told me to stop being silly. That was last May/June. I'm meant to have it every winter now. I have many deficiencies and abnormalities, but this is the only one being taken care of!
My specialist gave me the prescriptions I needed, but dated one incorrectly, so the pharmacy couldn't fill it yesterday. Mum went to another local compounding pharmacy who have been filling my various prescriptions since I was 13, and they filled it. It just has to arrive. I'm going to try my new pain medication tonight, and see if it helps me sleep at all. I really hope it does!!!
After I saw my specialist I had to go to pathology to get my vitamin D, iron stores, TSH and more tested. I had to lie down with my legs elevated during the blood test and for 15-20mins after, as I get very faint, dizzy and light-headed with any procedure involving needles and the like.
Then the mean pathologist came in, and laughed.
So I said: "Yeah, it's hilarious, me being this sick, isn't it?" (very sarcastically)
He replies: "Oh, sorry, it's just funny seeing you upside down from this point of view."
Uh-huh. Whatever.
Last time he told me I had to watch my blood test, wasn't allowed to lie down, and it was "all in my head" that I get faint from blood tests, the sight of blood and needles, etc. Afterwards, as it was nearing 5pm, he sent me out into the corridor to wait for my father, even though I was faint, seeing stars and had ringing in my ears. I reported him!! We also reported him when I was 7. He scared the hell out of me then. He said that if I didn't drink 3L of water he'd have to stick me 10 times with a needle. (The hospital policy is a maximum of 3 attempts, unless the patient requests another nurse/pathologist.) I was already frightened of needles, but he made it 100x worse! I now know his name, so I can go to pathology and say: "Anyone at all, except ..."
That's about it for my health/doctor update! I don't expect comments, so don't worry!
Take care. xoxo
I saw my specialist on Monday, who was not of much help. I've been put on a new medication for my back spasms, but I can only take it at night. She won't help with the rest of my pain, my insomnia, or sleep pattern. Apparently it could take over a year for this sleep regime and sleep hygeine to begin to work. I really don't believe much, if anything of what doctors tell me. They've lied to me enough for me to lose faith in them completely.
I got given another dose of vitamin D supplement, it's a liquid oily thing, which tastes horrid. The last time I had it I nearly threw up in my specialist's office, she told me to stop being silly. That was last May/June. I'm meant to have it every winter now. I have many deficiencies and abnormalities, but this is the only one being taken care of!
My specialist gave me the prescriptions I needed, but dated one incorrectly, so the pharmacy couldn't fill it yesterday. Mum went to another local compounding pharmacy who have been filling my various prescriptions since I was 13, and they filled it. It just has to arrive. I'm going to try my new pain medication tonight, and see if it helps me sleep at all. I really hope it does!!!
After I saw my specialist I had to go to pathology to get my vitamin D, iron stores, TSH and more tested. I had to lie down with my legs elevated during the blood test and for 15-20mins after, as I get very faint, dizzy and light-headed with any procedure involving needles and the like.
Then the mean pathologist came in, and laughed.
So I said: "Yeah, it's hilarious, me being this sick, isn't it?" (very sarcastically)
He replies: "Oh, sorry, it's just funny seeing you upside down from this point of view."
Uh-huh. Whatever.
Last time he told me I had to watch my blood test, wasn't allowed to lie down, and it was "all in my head" that I get faint from blood tests, the sight of blood and needles, etc. Afterwards, as it was nearing 5pm, he sent me out into the corridor to wait for my father, even though I was faint, seeing stars and had ringing in my ears. I reported him!! We also reported him when I was 7. He scared the hell out of me then. He said that if I didn't drink 3L of water he'd have to stick me 10 times with a needle. (The hospital policy is a maximum of 3 attempts, unless the patient requests another nurse/pathologist.) I was already frightened of needles, but he made it 100x worse! I now know his name, so I can go to pathology and say: "Anyone at all, except ..."
That's about it for my health/doctor update! I don't expect comments, so don't worry!
Take care. xoxo
Sunday, July 11, 2010
Brain fog and study don't mix.
Study:
Yesterday afternoon I had maths tutoring from 2.15pm - 5pm. And it went well; my tutor understood that sometimes I'd zone out, or need things revised because of the pain I was in, but overall I grasped all the concepts from Week 3. (Integration.) It was the homework that was difficult. My calculator (a TI-89 Titanium) wouldn't co-operate for a graphing question that HAD to be done on the calculator, so I skipped that question entirely after fiddling with the 'window' settings for 20 minutes. I think by the time I'd started my homework, I was in so much pain (back pain as well as the pain from my braces) and so brain dead that I really wasn't in the best condition to be doing calculus. I had to read the questions 3 times before I understood them, and I'd confuse a) with c) and have to start all over again! I finally finished at around 7.30pm, and the homework is sitting in an envelope, addressed and ready to be mailed to my teacher tomorrow. Yes, I could try again another day, but I work best when the mathematical concepts are fresh in my mind - even if my mind is full of 'fog'. Besides, I hate making mistakes, or realising that I've made them. I always think I should have done better, even if I get an A+. But because it's maths, I'm just going to settle for an end-of-year pass mark. I can't fail, or else I won't be able to get into Accounting. (I'm desperate to study Arts, then Law, but if I'm still really sick... A safe government job is what I should go for.) So my week is pretty much free until I have tutoring again next Saturday!
Sleep/insomnia.
I guess I thought I would sleep after studying for so long, being in so much pain all day, for days (which is exhausting) and washing, drying and straightening my hair (an exhausting task, which must be done every second day.) But I didn't sleep well. My younger brother was so hyper, he was banging on the bedroom walls and yelling until late at night (11.40pm) so even if I'd been able to go to bed at 10.30pm, I would've just become really stressed and felt sicker. I woke at 1am and 3.40am, and then slept fitfully until 6am. I have a really sore throat today, and have had one since I woke at 3.40am, so I got up at 6.30am to get ice cream! And then I got chills, then I felt like I was running a fever.
I'm just really not feeling well, and I think that the lack of sleep is making me sick. I've been up since 6.30am, pretty much, just lying down in between. I'm really nauseous, but can't take Ondansetron because it's being rationed for days when I'm doing something. (Like yesterday - study.) I did manage to change my bed linen today, but I've pretty much used up all my energy. And it's not even 1pm yet! I've spent a lot of time on my iPhone; on Tumblr, Twitter, and Facebook. That's basically my life: the internet and study. I stayed out of bed from 11am yesterday, and went to bed at 11pm, but I still slept terribly. I really think this "sleep hygeine" is useless for me. I'm going to nap if I can soon, because I feel really sick, and there's just not enough that I can do to keep myself occupied!
Comment if you have any suggestions for ways to use my time (NOT STUDY!!) or just want to say 'hi' ... I'm missing the comments! Thanks for reading!
Yesterday afternoon I had maths tutoring from 2.15pm - 5pm. And it went well; my tutor understood that sometimes I'd zone out, or need things revised because of the pain I was in, but overall I grasped all the concepts from Week 3. (Integration.) It was the homework that was difficult. My calculator (a TI-89 Titanium) wouldn't co-operate for a graphing question that HAD to be done on the calculator, so I skipped that question entirely after fiddling with the 'window' settings for 20 minutes. I think by the time I'd started my homework, I was in so much pain (back pain as well as the pain from my braces) and so brain dead that I really wasn't in the best condition to be doing calculus. I had to read the questions 3 times before I understood them, and I'd confuse a) with c) and have to start all over again! I finally finished at around 7.30pm, and the homework is sitting in an envelope, addressed and ready to be mailed to my teacher tomorrow. Yes, I could try again another day, but I work best when the mathematical concepts are fresh in my mind - even if my mind is full of 'fog'. Besides, I hate making mistakes, or realising that I've made them. I always think I should have done better, even if I get an A+. But because it's maths, I'm just going to settle for an end-of-year pass mark. I can't fail, or else I won't be able to get into Accounting. (I'm desperate to study Arts, then Law, but if I'm still really sick... A safe government job is what I should go for.) So my week is pretty much free until I have tutoring again next Saturday!
Sleep/insomnia.
I guess I thought I would sleep after studying for so long, being in so much pain all day, for days (which is exhausting) and washing, drying and straightening my hair (an exhausting task, which must be done every second day.) But I didn't sleep well. My younger brother was so hyper, he was banging on the bedroom walls and yelling until late at night (11.40pm) so even if I'd been able to go to bed at 10.30pm, I would've just become really stressed and felt sicker. I woke at 1am and 3.40am, and then slept fitfully until 6am. I have a really sore throat today, and have had one since I woke at 3.40am, so I got up at 6.30am to get ice cream! And then I got chills, then I felt like I was running a fever.
I'm just really not feeling well, and I think that the lack of sleep is making me sick. I've been up since 6.30am, pretty much, just lying down in between. I'm really nauseous, but can't take Ondansetron because it's being rationed for days when I'm doing something. (Like yesterday - study.) I did manage to change my bed linen today, but I've pretty much used up all my energy. And it's not even 1pm yet! I've spent a lot of time on my iPhone; on Tumblr, Twitter, and Facebook. That's basically my life: the internet and study. I stayed out of bed from 11am yesterday, and went to bed at 11pm, but I still slept terribly. I really think this "sleep hygeine" is useless for me. I'm going to nap if I can soon, because I feel really sick, and there's just not enough that I can do to keep myself occupied!
Comment if you have any suggestions for ways to use my time (NOT STUDY!!) or just want to say 'hi' ... I'm missing the comments! Thanks for reading!
Saturday, July 10, 2010
Braces
Braces:
I got my braces on last week, on Tuesday afternoon. And it didn't hurt... For a few hours. Then it was absolutely agonising. And it still is. The orthodontist and assistants are all really nice, and they explain what they're going to do before they do it, and they warn me if something might be painful! This is all new for me, my last orthodontist thought braces were a "pain-free" procedure, but it would be hard to eat steak for the first week. She obviously never had braces, or met people with different pain thresholds!
I'm on Panadeine Forte for the pain, which, as bloody always, does almost nothing. On the upside, it means I can open my mouth enough to eat rice, but apart from coconut rice, I'm basically living off jelly, ice cream, and anything soft that doesn't require chewing. I take Mersyndol before bed and when I wake at 3am, because it's supposed to help you sleep. It didn't when I last had braces, and it isn't this time! Still, it means the Panadeine Forte will last longer, because I don't know how long I'll be in pain.
The pain is keeping me awake at night. I've been waking at 3am every single night since I got these braces, and today, I haven't got back to sleep yet. And I have to get up at 12.45pm for maths tutoring. I'm really not looking forward to it; it's hard for me to concentrate at the best of times, but when I'm in overwhelming pain, calculus is infinitely more difficult. I haven't been able to revise at all. The first week of the holidays I was too exhausted and busy, and this week I've been in too much pain and too sleep deprived. I really hope I can remember the basics of antidifferentiation and integration, I really don't want to waste my tutor's time revising. I feel guilty that I couldn't revise, and that I'm taking up my tutor's weekends every week...
I'm considering going to the hospital if the pain keeps up much longer. It isn't often that pain brings me to tears, but this is. On a daily basis. Also, decent pain relief (like morphine) helps you sleep, apparently. It didn't when I was 9, but, who knows? I just want to be pain free for one entire day!!!
Sleep routine:
I'm still going to bed each night between 10.30pm and 11.30pm, and I am generally asleep by midnight. I always wake at 3am, regardless of what time I got up the previous day, whether I napped, or anything else that's sleep-hygeine related. This week, it's been the pain waking me, but before that, it was a new pattern. I just hope it changes again soon. My younger brother goes back to school on Monday, so I'll be able to go to bed at 10.30pm every night and get to sleep sooner, because it will be quiet, finally. Mum has promised. I figure if I stick to a night time routine, the day time sleep will lessen - my need for it, that is, so eventually I can get up earlier. Some days I'm in bed until 4pm simply because I can't get up. I really need more sleep, at night, in order to do well this year, and to get back to school and Orientation. I'm trying my hardest, but my body is trying it's hardest to make sure I don't sleep! M.E. is the most confusing, frustrating and misunderstood illness!!
Reunion:
I have a one-year reunion for my high school coming up in about a fortnight. I've pretty much got my outfit, but I need a bag, as mentioned in a previous post, and I might get a new pair of Chucks. One day I'll be able to fit into adult's shoes. I'd wear flats, but I can only fit into one kind, that is sold at one store in one season, and last time I went, they had a size 2 (I've grown out of mine) and a size 6. Not helpful. But at least I'm relatively cheap to buy for when it comes to clothing; I fit kid's shoes a lot of the time, especially if they're runners.
I'm hoping the pain will subside enough for me to go and look for a bag and maybe get some Chucks. I know my size, and the colours I like, so it's not too energy-consuming to buy them. I'm excited about the reunion; I haven't really seen anyone since my November exams last year, and then it was only a few girls. If I'm still in pain by the reunion, which I shouldn't be, I'll eat some rice beforehand, because I doubt they'll be serving jelly, lol!!
Unfortunately, I'm seeing my specialist earlier that week, so I'll be tired from the constant battle for meds or a treatment that isn't SSRIs. I just refuse SSRIs and Melatonin; they don't work, they never have, and they won't now!
Thanks for reading, and I love reading your comments and seeing your feedback. LMK if the last post was too long, okay?
I got my braces on last week, on Tuesday afternoon. And it didn't hurt... For a few hours. Then it was absolutely agonising. And it still is. The orthodontist and assistants are all really nice, and they explain what they're going to do before they do it, and they warn me if something might be painful! This is all new for me, my last orthodontist thought braces were a "pain-free" procedure, but it would be hard to eat steak for the first week. She obviously never had braces, or met people with different pain thresholds!
I'm on Panadeine Forte for the pain, which, as bloody always, does almost nothing. On the upside, it means I can open my mouth enough to eat rice, but apart from coconut rice, I'm basically living off jelly, ice cream, and anything soft that doesn't require chewing. I take Mersyndol before bed and when I wake at 3am, because it's supposed to help you sleep. It didn't when I last had braces, and it isn't this time! Still, it means the Panadeine Forte will last longer, because I don't know how long I'll be in pain.
The pain is keeping me awake at night. I've been waking at 3am every single night since I got these braces, and today, I haven't got back to sleep yet. And I have to get up at 12.45pm for maths tutoring. I'm really not looking forward to it; it's hard for me to concentrate at the best of times, but when I'm in overwhelming pain, calculus is infinitely more difficult. I haven't been able to revise at all. The first week of the holidays I was too exhausted and busy, and this week I've been in too much pain and too sleep deprived. I really hope I can remember the basics of antidifferentiation and integration, I really don't want to waste my tutor's time revising. I feel guilty that I couldn't revise, and that I'm taking up my tutor's weekends every week...
I'm considering going to the hospital if the pain keeps up much longer. It isn't often that pain brings me to tears, but this is. On a daily basis. Also, decent pain relief (like morphine) helps you sleep, apparently. It didn't when I was 9, but, who knows? I just want to be pain free for one entire day!!!
Sleep routine:
I'm still going to bed each night between 10.30pm and 11.30pm, and I am generally asleep by midnight. I always wake at 3am, regardless of what time I got up the previous day, whether I napped, or anything else that's sleep-hygeine related. This week, it's been the pain waking me, but before that, it was a new pattern. I just hope it changes again soon. My younger brother goes back to school on Monday, so I'll be able to go to bed at 10.30pm every night and get to sleep sooner, because it will be quiet, finally. Mum has promised. I figure if I stick to a night time routine, the day time sleep will lessen - my need for it, that is, so eventually I can get up earlier. Some days I'm in bed until 4pm simply because I can't get up. I really need more sleep, at night, in order to do well this year, and to get back to school and Orientation. I'm trying my hardest, but my body is trying it's hardest to make sure I don't sleep! M.E. is the most confusing, frustrating and misunderstood illness!!
Reunion:
I have a one-year reunion for my high school coming up in about a fortnight. I've pretty much got my outfit, but I need a bag, as mentioned in a previous post, and I might get a new pair of Chucks. One day I'll be able to fit into adult's shoes. I'd wear flats, but I can only fit into one kind, that is sold at one store in one season, and last time I went, they had a size 2 (I've grown out of mine) and a size 6. Not helpful. But at least I'm relatively cheap to buy for when it comes to clothing; I fit kid's shoes a lot of the time, especially if they're runners.
I'm hoping the pain will subside enough for me to go and look for a bag and maybe get some Chucks. I know my size, and the colours I like, so it's not too energy-consuming to buy them. I'm excited about the reunion; I haven't really seen anyone since my November exams last year, and then it was only a few girls. If I'm still in pain by the reunion, which I shouldn't be, I'll eat some rice beforehand, because I doubt they'll be serving jelly, lol!!
Unfortunately, I'm seeing my specialist earlier that week, so I'll be tired from the constant battle for meds or a treatment that isn't SSRIs. I just refuse SSRIs and Melatonin; they don't work, they never have, and they won't now!
Thanks for reading, and I love reading your comments and seeing your feedback. LMK if the last post was too long, okay?
Monday, July 5, 2010
Shopping & Twilight
Shopping
So, yesterday I went shopping. I found a blazer on Friday in Portmans after I'd had my hair cut, but they only had a size six. And I'm not a size six, so they put a size ten and twelve on hold at another store in a nearby shopping centre. I managed to go yesterday, as they wouldn't hold it any longer, and the size ten fits (almost) perfectly! I just have to get the sleeves altered; they are too long. I never fit anything properly, and I can never buy shoes. (Unless they're runners, generally Chucks, or Havaianas.) Apparently girls with size 3 feet don't exist. Anyway, Mum talked me into trying on some nice tops (that weren't t-shirts for a change) while I was there, and I found two that I really loved, as well as a necklace to go with the outfit!
I just need to get a bag, and then I've actually got an outfit I can wear to more formal occasions. Until now, my whole wardrobe consisted of jeans, t-shirts, hoodies and tracksuit pants. (For when I'm too sick/in too much pain to put on and/or wear jeans, or need to exercise.) One top is a black lace one, and I'm going to wear a black camisole/tank top under it, obviously. The other top is sort of a dark purple, and it's really pretty. Yes, I'm great at describing things, aren't I?! Um, the blazer is sort of "tuxedo-inspired" (apparently) and it's black.
Twilight
For those of you who are my friends on Facebook or who follow me on Twitter, you may know that I'd been planning an outing with an old friend (our parents met when we were babies!) to see the movie 'Twilight: Eclipse'. I'm not a fan of romances, for instance, I love Shakespeare, but really strongly disliked 'Romeo & Juliet', which was sadly the first Shakespearean play we did in English at school. That was back in Year 9. (In Year 10 we studied 'Macbeth', and in Year 11 we studied 'Othello'. I loved both. Some people thought that was odd.)
Anyway, Mum rented the first two 'Twilight' movies for me last week, so I could catch up, as I wasn't well enough to get to a bookstore. The first one was alright, the second was worse, and the third, which I saw with my friend, was probably my favourite. There were some funny lines, but the last film we saw together was a James Bond movie at Gold Class, with Starlight. That was my choice! So that might give you a clue as to my interests when it comes to movies. I also don't like people messing with the classics. Don't mess with 'Dracula', okay, people?! I don't like my vampires sparkly and feeding off animals! Speaking of 'Dracula', I love the book, and the film. (I don't know which particular version I have, I should check sometime.)
I had a great time, and I was even well enough to wear lip gloss. (The last time I wore make-up was at my Year 11 formal!) Well, I actually wanted to look nice. I didn't want to look like a vampire, being pale and all, but considering that Edward seems to wear lipstick, I probably ended up looking more like a vampire than ever! I really hope that there are some good movies coming out over the next few months, I really want to catch up with this friend again. She even likes 'Doctor Who' now!! Awesome. (I hadn't seen her since March last year, so people can change a lot in that amount of time!)
It was a fundraiser for a charity/support group for adolescents with chronic illnesses - I've been a member since I was in Year 8 (age 14) but I haven't been able to go to any of the socials or camps because they're not designed for spoonies. Things like ropes courses, swimming, rock climbing, indoor sports centres (wheelchair friendly) have been the reasons I've missed out. It's been so long, in fact, that we've now got a new co-ordinator (again) and I only recognised two of the people there. They still remembered me! I had a brilliant time, and I love going out. There was a bookstore next to the movie theatre, and I got super excited, because they had the definitive edition of 'The Diary Of Anne Frank'. Which I mistook for the critical edition. Can I just say that it sucks, because I still have to order it in from the US. Hopefully it's not so expensive anymore, otherwise I'll have to wait until Christmas. *extremelysadface*
Sleep (or lack thereof)
My sleep pattern has gone crazy. I go to bed between 10.30pm and 11.40pm each night, am generally asleep by midnight at the latest, and wake at 2.30am or 3am every night without fail. I stay awake for hours, usually falling asleep again around 7am. But it's now past 8am, and I have not slept since 3am. So I think I might try to sleep until 3pm. I don't care what it supposedly does to one's sleep pattern, I just can't keep using Ondansetron because my crazy, stupid body won't let me sleep! Right now I'm really craving a bagel. We get our milk home-delivered, and you can order other things like eggs, bread, and bagels. I have recently discovered sesame bagels, and love them! They're perfect for when I feel sick, but have to eat. But back to the sleep. Because this new sleep pattern only started about 10 days ago, I figure that if I continue to go to bed at around 11pm nightly, and avoid naps, it should right itself, so that I can start to get up earlier each day. (No earlier than 11am. That's just a waste of rest time, and the only advantage of distance education!) I'm still not sleepy. I have no idea what is wrong with my body clock, because I am really starting to feel sick now.
Braces. Again.
So, on Tuesday afternoon I'm having my braces put on. Yay! NOT. I am really not looking forward to the pain, and I couldn't get an appointment with my G.P. until Wednesday evening, so I'm going to have to use lots of OTC painkillers to manage. (Last time I got both top and bottom sets of braces on at once, and I was on a liquid diet for a month. I couldn't chew! I'd tear my sandwiches into pieces, then swallow them whole. I was 12, and it was much less painful having four teeth removed under general anesthetic than it was to have braces.) I'd rather have the painkillers I got when I had those teeth pulled than Panadeine Forte! IDK what they put in my drip, but it was effective. I couldn't feel my lip for two days! (It was quite funny.) I'm hoping because I am only getting braces on the top set of teeth, and on a much smaller section, that the pain will be a lot less, but I really don't know. I have an incredibly low pain threshold. I just hope I can still get things done this week. Like get a bag to go with that outfit, or see my grandmother, or even study, because I have tutoring this Saturday. And it's the last week of the holidays. *sigh*
Thanks for reading, comment if you want, I'm sure you know by now that I love comments!
So, yesterday I went shopping. I found a blazer on Friday in Portmans after I'd had my hair cut, but they only had a size six. And I'm not a size six, so they put a size ten and twelve on hold at another store in a nearby shopping centre. I managed to go yesterday, as they wouldn't hold it any longer, and the size ten fits (almost) perfectly! I just have to get the sleeves altered; they are too long. I never fit anything properly, and I can never buy shoes. (Unless they're runners, generally Chucks, or Havaianas.) Apparently girls with size 3 feet don't exist. Anyway, Mum talked me into trying on some nice tops (that weren't t-shirts for a change) while I was there, and I found two that I really loved, as well as a necklace to go with the outfit!
I just need to get a bag, and then I've actually got an outfit I can wear to more formal occasions. Until now, my whole wardrobe consisted of jeans, t-shirts, hoodies and tracksuit pants. (For when I'm too sick/in too much pain to put on and/or wear jeans, or need to exercise.) One top is a black lace one, and I'm going to wear a black camisole/tank top under it, obviously. The other top is sort of a dark purple, and it's really pretty. Yes, I'm great at describing things, aren't I?! Um, the blazer is sort of "tuxedo-inspired" (apparently) and it's black.
Twilight
For those of you who are my friends on Facebook or who follow me on Twitter, you may know that I'd been planning an outing with an old friend (our parents met when we were babies!) to see the movie 'Twilight: Eclipse'. I'm not a fan of romances, for instance, I love Shakespeare, but really strongly disliked 'Romeo & Juliet', which was sadly the first Shakespearean play we did in English at school. That was back in Year 9. (In Year 10 we studied 'Macbeth', and in Year 11 we studied 'Othello'. I loved both. Some people thought that was odd.)
Anyway, Mum rented the first two 'Twilight' movies for me last week, so I could catch up, as I wasn't well enough to get to a bookstore. The first one was alright, the second was worse, and the third, which I saw with my friend, was probably my favourite. There were some funny lines, but the last film we saw together was a James Bond movie at Gold Class, with Starlight. That was my choice! So that might give you a clue as to my interests when it comes to movies. I also don't like people messing with the classics. Don't mess with 'Dracula', okay, people?! I don't like my vampires sparkly and feeding off animals! Speaking of 'Dracula', I love the book, and the film. (I don't know which particular version I have, I should check sometime.)
I had a great time, and I was even well enough to wear lip gloss. (The last time I wore make-up was at my Year 11 formal!) Well, I actually wanted to look nice. I didn't want to look like a vampire, being pale and all, but considering that Edward seems to wear lipstick, I probably ended up looking more like a vampire than ever! I really hope that there are some good movies coming out over the next few months, I really want to catch up with this friend again. She even likes 'Doctor Who' now!! Awesome. (I hadn't seen her since March last year, so people can change a lot in that amount of time!)
It was a fundraiser for a charity/support group for adolescents with chronic illnesses - I've been a member since I was in Year 8 (age 14) but I haven't been able to go to any of the socials or camps because they're not designed for spoonies. Things like ropes courses, swimming, rock climbing, indoor sports centres (wheelchair friendly) have been the reasons I've missed out. It's been so long, in fact, that we've now got a new co-ordinator (again) and I only recognised two of the people there. They still remembered me! I had a brilliant time, and I love going out. There was a bookstore next to the movie theatre, and I got super excited, because they had the definitive edition of 'The Diary Of Anne Frank'. Which I mistook for the critical edition. Can I just say that it sucks, because I still have to order it in from the US. Hopefully it's not so expensive anymore, otherwise I'll have to wait until Christmas. *extremelysadface*
Sleep (or lack thereof)
My sleep pattern has gone crazy. I go to bed between 10.30pm and 11.40pm each night, am generally asleep by midnight at the latest, and wake at 2.30am or 3am every night without fail. I stay awake for hours, usually falling asleep again around 7am. But it's now past 8am, and I have not slept since 3am. So I think I might try to sleep until 3pm. I don't care what it supposedly does to one's sleep pattern, I just can't keep using Ondansetron because my crazy, stupid body won't let me sleep! Right now I'm really craving a bagel. We get our milk home-delivered, and you can order other things like eggs, bread, and bagels. I have recently discovered sesame bagels, and love them! They're perfect for when I feel sick, but have to eat. But back to the sleep. Because this new sleep pattern only started about 10 days ago, I figure that if I continue to go to bed at around 11pm nightly, and avoid naps, it should right itself, so that I can start to get up earlier each day. (No earlier than 11am. That's just a waste of rest time, and the only advantage of distance education!) I'm still not sleepy. I have no idea what is wrong with my body clock, because I am really starting to feel sick now.
Braces. Again.
So, on Tuesday afternoon I'm having my braces put on. Yay! NOT. I am really not looking forward to the pain, and I couldn't get an appointment with my G.P. until Wednesday evening, so I'm going to have to use lots of OTC painkillers to manage. (Last time I got both top and bottom sets of braces on at once, and I was on a liquid diet for a month. I couldn't chew! I'd tear my sandwiches into pieces, then swallow them whole. I was 12, and it was much less painful having four teeth removed under general anesthetic than it was to have braces.) I'd rather have the painkillers I got when I had those teeth pulled than Panadeine Forte! IDK what they put in my drip, but it was effective. I couldn't feel my lip for two days! (It was quite funny.) I'm hoping because I am only getting braces on the top set of teeth, and on a much smaller section, that the pain will be a lot less, but I really don't know. I have an incredibly low pain threshold. I just hope I can still get things done this week. Like get a bag to go with that outfit, or see my grandmother, or even study, because I have tutoring this Saturday. And it's the last week of the holidays. *sigh*
Thanks for reading, comment if you want, I'm sure you know by now that I love comments!
Tuesday, June 29, 2010
Holidays!
Holidays!
Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!
The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.
This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?
The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!
That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p
Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!
Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!
The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.
This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?
The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!
That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p
Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!
Tuesday, June 8, 2010
An update.
My diary:
So I've been writing in my diary daily, and I am actually finding it helpful. (... And painful; I've never been able to write more than half a page without my whole left hand cramping and aching!) I have named my diary, too. I find myself a little more content, or at least, less ill at ease after I have written several pages. I feel I have so much to confide in Jadzia, (this is what I have named my diary) so much that my hand cannot keep pace with my mind, which, as always, is running at a million miles a second! I would dearly love for the pain to go away, so I can write and write until I have lifted some of this weight that is dragging me ever deeper with each passing day.
I find it reassuring to know that I can always turn to my diary, even when I am housebound, with few friends who keep in touch. I wish I had more energy, or some at least, so I wouldn't always be lacking in energy, and using the next day's ad infinitum. With a little more energy, I would be able to dress, shower, wash my hair and even study, as well as write in my diary without lying in bed in between each minor task. I can only hope that I am able to sleep well soon, so that I may return to school in November and give these last two subjects my best try. I miss school; the routine, the social contact, the familarity and even some of the teachers!
If I am granted one wish this year, let it be that my sleep returns to a 11.30pm-6.45am pattern so that I can do my best each day. I fear that I bore readers (if there are any) with my repetitive posts. Hence, my diary. Jadzia shall never stop "listening" and I will always have an outlet for my emotions, one which is cheaper than a psychologist and has no office hours!
Despair, or Year 12, as it is otherwise known!
I am currently despairing, as I feel I shall receive a terrible mark for my last calculus assignment, which I must send off with a medical certificate this week. (My teacher did say it would be the hardest assignment or test I would encounter this year, and it is no wonder I had so much trouble with it, but I was so hoping to maintain my A average.) I should work on my next SAC today, which is only 70mins long, including reading time. I do hope I receive a decent mark for this SAC, as I cannot afford a low average for my schoolwork. I tend to perform badly on exams, as people with M.E. generally do; once time constraints are applied, marks go down, and forgetfulness increases. It has been proven, but, naturally, the governing body for Year 11 & 12 assessments does not recognise recent research. This illness frustrates me more than words can describe! I believe this SAC covers weeks 9-12, or the tangent function, co-ordinate geometry, and an awful lot of differentiation. I studied for a long time with my tutor, and even after she had left, so I hope the knowledge stays with me. Wish me luck, it's due in this Friday!
"The Diary Of Anne Frank"
I am re-reading Anne Frank's Diary, not because I've started to keep a diary of my own, but because I've always loved the book, and I used to want to be like Anne Frank when I was younger. (I was 7 or 8 when I first read it.) I wanted to have that many friends, be popular and fun, do well in school and have (what I considered to be) beautiful penmanship. Above all I wanted the ability she had to look at herself without pity, and analyse herself, her interactions with others and every aspect of herself. I wanted to have that kind of faith in God, and a sense of optimism.
There is a passage that spoke to me, and I honestly wonder if it could help someone who feels the way I do... "The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simply beauty of nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles." (Wednesday, 23rd February, 1944, "The Diary Of Anne Frank")
I am without any kind of faith; I seem to be unable to sustain or even start a belief in a God of any sort, and this is the only real issue I have with the passage. A few entries before Anne wrote this, her mother advised one of their helpers, who was feeling terribly miserable, to think of all the others who are miserable in the world, and said that would help to cheer her up. That is quite similar to people telling me: "There's always someone worse off than you, be grateful for what you have." I think I would rather go out to the countryside for a few days, or a week, and spend some time relaxing, writing and unwinding. It is very difficult to be at one with nature in a city! Anne seems wise beyond her years, and I would be grateful to have some of her spirit; her unwavering faith in God, her sagely advice, and her patience.
In reading her diary I have seen how much she has changed over the course of a year, from the first entries, about her life with friends, boy friends, outings and more, to her increasingly introspective life in hiding, learning to keep the peace, bite her tongue, and try to understand and get along with all occupants of 'The Secret Annexe.'
I hope that by keeping a diary, and by talking through my problems that I will be able to become a better person. Not like Anne Frank, by any means, but simply more understanding and tolerant of my family.
Thank you for reading, and if you'd like, please leave a comment! (I always love to read them, and I always try to respond.)
So I've been writing in my diary daily, and I am actually finding it helpful. (... And painful; I've never been able to write more than half a page without my whole left hand cramping and aching!) I have named my diary, too. I find myself a little more content, or at least, less ill at ease after I have written several pages. I feel I have so much to confide in Jadzia, (this is what I have named my diary) so much that my hand cannot keep pace with my mind, which, as always, is running at a million miles a second! I would dearly love for the pain to go away, so I can write and write until I have lifted some of this weight that is dragging me ever deeper with each passing day.
I find it reassuring to know that I can always turn to my diary, even when I am housebound, with few friends who keep in touch. I wish I had more energy, or some at least, so I wouldn't always be lacking in energy, and using the next day's ad infinitum. With a little more energy, I would be able to dress, shower, wash my hair and even study, as well as write in my diary without lying in bed in between each minor task. I can only hope that I am able to sleep well soon, so that I may return to school in November and give these last two subjects my best try. I miss school; the routine, the social contact, the familarity and even some of the teachers!
If I am granted one wish this year, let it be that my sleep returns to a 11.30pm-6.45am pattern so that I can do my best each day. I fear that I bore readers (if there are any) with my repetitive posts. Hence, my diary. Jadzia shall never stop "listening" and I will always have an outlet for my emotions, one which is cheaper than a psychologist and has no office hours!
Despair, or Year 12, as it is otherwise known!
I am currently despairing, as I feel I shall receive a terrible mark for my last calculus assignment, which I must send off with a medical certificate this week. (My teacher did say it would be the hardest assignment or test I would encounter this year, and it is no wonder I had so much trouble with it, but I was so hoping to maintain my A average.) I should work on my next SAC today, which is only 70mins long, including reading time. I do hope I receive a decent mark for this SAC, as I cannot afford a low average for my schoolwork. I tend to perform badly on exams, as people with M.E. generally do; once time constraints are applied, marks go down, and forgetfulness increases. It has been proven, but, naturally, the governing body for Year 11 & 12 assessments does not recognise recent research. This illness frustrates me more than words can describe! I believe this SAC covers weeks 9-12, or the tangent function, co-ordinate geometry, and an awful lot of differentiation. I studied for a long time with my tutor, and even after she had left, so I hope the knowledge stays with me. Wish me luck, it's due in this Friday!
"The Diary Of Anne Frank"
I am re-reading Anne Frank's Diary, not because I've started to keep a diary of my own, but because I've always loved the book, and I used to want to be like Anne Frank when I was younger. (I was 7 or 8 when I first read it.) I wanted to have that many friends, be popular and fun, do well in school and have (what I considered to be) beautiful penmanship. Above all I wanted the ability she had to look at herself without pity, and analyse herself, her interactions with others and every aspect of herself. I wanted to have that kind of faith in God, and a sense of optimism.
There is a passage that spoke to me, and I honestly wonder if it could help someone who feels the way I do... "The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simply beauty of nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles." (Wednesday, 23rd February, 1944, "The Diary Of Anne Frank")
I am without any kind of faith; I seem to be unable to sustain or even start a belief in a God of any sort, and this is the only real issue I have with the passage. A few entries before Anne wrote this, her mother advised one of their helpers, who was feeling terribly miserable, to think of all the others who are miserable in the world, and said that would help to cheer her up. That is quite similar to people telling me: "There's always someone worse off than you, be grateful for what you have." I think I would rather go out to the countryside for a few days, or a week, and spend some time relaxing, writing and unwinding. It is very difficult to be at one with nature in a city! Anne seems wise beyond her years, and I would be grateful to have some of her spirit; her unwavering faith in God, her sagely advice, and her patience.
In reading her diary I have seen how much she has changed over the course of a year, from the first entries, about her life with friends, boy friends, outings and more, to her increasingly introspective life in hiding, learning to keep the peace, bite her tongue, and try to understand and get along with all occupants of 'The Secret Annexe.'
I hope that by keeping a diary, and by talking through my problems that I will be able to become a better person. Not like Anne Frank, by any means, but simply more understanding and tolerant of my family.
Thank you for reading, and if you'd like, please leave a comment! (I always love to read them, and I always try to respond.)
Tuesday, June 1, 2010
Doctor's appointments & a long-kept secret
Doctor's appointments:
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.
Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.
Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.
One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.
A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.
If people don't like me as I am, tough.
Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.
Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.
Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.
Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.
Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.
One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.
A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.
If people don't like me as I am, tough.
Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.
Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.
Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!
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