Tumblr!
Yes, I've taken another step into the 21st century; I now have a Tumblr account... I've just posted an introductory post, reblogged some funny stuff, and posted some of my fave pics. I'm not sure exactly what else to do with it. It's a mini-blogging service, right? Does that mean that when I'm too tired to write a full post here, I can write a mini one there? ... I might just do that! Um, anyway, this is me on Tumblr: http://thecabbagestalk.tumblr.com/ I figured I should try it out, as a lot of people on Facebook and on Twitter have it. I like it so far, especially the background I chose for my Tumblr. =D
Side effects...
Because my specialist put me on a dose that was so high it's classified as Naltrexone, not Low Dose Naltrexone, I got one of the worst side effects possible: lethargy/fatigue/exhaustion. So that's why I've been feeling more zombie-like than usual this past week! I also had a lot of nausea and dizziness/lightheadedness. Now that I'm down to about 6mg, I should have milder nausea and less dizziness/lightheadedness. Although the nausea was shocking yesterday when I got up for tutoring; I couldn't sit up or even drink. Thankfully I had some Ondansetron!
Maths:
The next two weeks are assigned to a two week project SAC, designed to be completed in about 7.5hrs max. After that, I have a 60 minute SAC, then I start Unit 4, which begins with antidifferentiation. I had a bit of trouble with that in Year 11, although it was quite rushed when we studied it. Hopefully I'll do better this time around! I have maths tutoring today and we're going to revise the topics my teacher said would be covered in the SAC. That way I'll be fully prepared. (I hope; Mum had a look [she's my supervisor] and said it looked really long.) The next SAC (the 60 minute one) is on calculus/differentiation and circular functions, so I definitely need to revise circular functions before that week begins. I got a Very High on my last SAC, which is an A/A+, I really hope I can maintain that for my school work and SACs.
Exams are my main worry; I get panic attacks about them, and get exam "panic" - my mind can go blank from fear. It happened twice in two Year 11 maths tests. Plus it's quite scary being in a room with just the examiner watching you. And this time it won't be a teacher from my school. =( There's a morning exam, so I don't know how well I'll do on that one, as I can't function until midday, at least. The other one starts just before midday, I think, so that should be okay. I've applied to sit them at home, so that way I can lie down during my rest breaks. I hope I get a good mark; my teacher thinks I will definitely pass, which is brilliant! She actually thought I'd been a student who excelled at maths my whole life! =o
Sleep...
I slept a bit better the other night, and I seem to be able to get to sleep by 1.30am at the moment, but I wake quite regularly. Today I went to bed at midnight, fell asleep at around 1am, woke at about 2am, then 4.50am, and I'm still awake. I tried to get back to sleep, but couldn't, so I figured I'd write a blog post. I can go to school on 3 hours sleep, it's just trying to get 3 hours of unbroken sleep. I'm really worried about my sleeping pattern because I start orientation in Nov/Dec, and I need to be able to get up at 6.30am, or 6.50am at the latest. Which means I need some solid sleep, and to be able to sleep from about midnight. I know someone my age needs 9-10 hours of sleep per night, and I need more than that because of my Idiopathic Hypersomnolence, but, realistically, I haven't slept like that since I was about 10. If one thing gets sorted out this year, or changes for the better, I want it to be my sleep. (Or "sleep pattern")
I guess that's it.
Thanks for all your comments, I really appreciate every one of them, and respond to them as soon as I can; lately I'm not able to use my laptop much at all. I'll try to sleep now, seeing as it's after 6am. If you've got any tips on how to use Tumblr, how to cope with lack of sleep/side effects/illness or exam anxiety, I'd love to hear them! =) Thanks for reading!
Sunday, May 23, 2010
Monday, May 17, 2010
Good news!
First of all, the good (medical) news:
My specialist agreed to prescribe LDN for me. (That's Low Dose Naltrexone, if you didn't know. ^.^) She said to take a quarter of a tablet, but didn't specify when or how to take it, or whether I can or should increase the doseage if needed. Each tablet is 50mg, so a quarter (it's hard to make it exact, even with a pill cutter) is about 12.5mg. So that's what I'm taking each night.
I'm going to see my GP, ask what the highest dose is, how I should go off it (if I need to) and how long it needs before it starts working. My specialist had never prescribed LDN before, probably because her patients trust her and don't do their own research!!
I've been on it since the 12/05/10, and it does seem to make headaches less severe and Panadol work better for them, but that could just be a placebo effect, or my mind making it think it's doing that. Because I studied for 5.5hrs today, I had a lot of back pain. It wasn't as bad as last week; I was incapacitated then, and totally bedbound, unable to move for about 4hrs. This week, it was still awful pain, but I could manage to do a few things before lying down with a heatpack for 1.5hrs and then having a hot shower.
Heat seems to really help my pain. It didn't help my rheumatism. I had a bad attack of it the other night, so I was lying down, mum was bringing heatpacks and I had my electric blanket on full. But mum's arthritis was playing up, too (our pain always seems to coincide) so we both want a definitive test to rule out all types of arthritis. But no side effects so far from LDN, because I was getting headaches before it, I think that it's just normal ME headaches.
I can only take Panadol or Nurofen while on LDN, anything with codeine will cause a reaction similar to an opiod overdose. My specialist doesn't know what it'd look like, so mum took all meds with codeine out of my room. My memory is so bad; I thought Mersyndol didn't have codeine!!
The good (academic) news:
I got my SAC in the mail last week, and I got a "Very High", which means my mark is in the 80% - 100% range. I think I got an A+, but after I saw that I got higher than a B, I was so happy I couldn't be bothered calculating my result as a percentage. So that's brilliant, because it counts for my work from Weeks 4-7! I'm really happy, but worried about my next SAC. It sounds rather complex.
Fail!!! (Or "brain fog" in the ME world)
I thought my SAC was this week, and that's why the Distance Education people had posted the SAC to my mum (my supervisor) last week. I got my weeks confused. This week is Week 13, which is more calculus/differentiation, but Weeks 14 and 15 are the SAC. It's a project on calculus/differentiation, and it's supposed to take no more than 7hrs in total. Or something like that. The week after that (Week 16) I have another SAC, which is a test-format SAC on, I guess, calculus/differentiation. Then I think it's holidays. So I'll be really busy for the next few weeks!! Although, I've already completed this week's required homework, and my teacher is visiting on Tuesday, so I can show her what I'm having trouble with, and we can work out what amendments to the requirements would be best for me.
Birthday presents:
I was finally able to go out a week or so ago and buy a new pair of tracksuit pants (one I bought in January stretched strangely, so now they're too long to wear. The fabric was waaaay too stretchy!! (On the old pair!) I still need to get this new pair taken up at the tailor's. I also bought new winter pyjamas, and a hoodie that matches them. Plus slippers. I figured I may as well get really comfortable pyjamas, seeing as I spend so much time in them! I got one blue pair (paisely blue/aqua with a royal blue top) and a purple pair (white/purple striped pants with a purple top.) I still want to buy a dressing gown, though. One of those warm ones. I haven't found one yet, but I'll keep looking! I used my gift card and some of the money I got for my birthday. There was a huge special on at that particular store, which was great! I may even get a second hoodie from there; quite cheap, very comfortable and warm.
Sleep:
My sleep is all over the place. Most nights I'm up until 6am, or until I get a headache, nausea and dizziness, (from lack of sleep) so that I have to lie down with my eyes closed, and not move. Last night, though, I went to bed at 11.25pm, woke at 3.30am, and a few times in between. I've been up since. It's about 5.10am now, so I'm going to try and sleep. I can never catch up on sleep, because in the mornings (7.30am - 9am) there's "getting ready for school noise" and in the afternoons/evenings there's "arriving home/playing PS2, etc/getting dinner ready noise" So I really need to get my sleep sorted. I have no idea how to, though. Any ideas? (Apart from anything sleep hygeine related; that's what got my sleep into this freaky pattern in the first place!)
Thanks so much for reading. Any comments, feedback, or tips would be greatly appreciated! Take care.
My specialist agreed to prescribe LDN for me. (That's Low Dose Naltrexone, if you didn't know. ^.^) She said to take a quarter of a tablet, but didn't specify when or how to take it, or whether I can or should increase the doseage if needed. Each tablet is 50mg, so a quarter (it's hard to make it exact, even with a pill cutter) is about 12.5mg. So that's what I'm taking each night.
I'm going to see my GP, ask what the highest dose is, how I should go off it (if I need to) and how long it needs before it starts working. My specialist had never prescribed LDN before, probably because her patients trust her and don't do their own research!!
I've been on it since the 12/05/10, and it does seem to make headaches less severe and Panadol work better for them, but that could just be a placebo effect, or my mind making it think it's doing that. Because I studied for 5.5hrs today, I had a lot of back pain. It wasn't as bad as last week; I was incapacitated then, and totally bedbound, unable to move for about 4hrs. This week, it was still awful pain, but I could manage to do a few things before lying down with a heatpack for 1.5hrs and then having a hot shower.
Heat seems to really help my pain. It didn't help my rheumatism. I had a bad attack of it the other night, so I was lying down, mum was bringing heatpacks and I had my electric blanket on full. But mum's arthritis was playing up, too (our pain always seems to coincide) so we both want a definitive test to rule out all types of arthritis. But no side effects so far from LDN, because I was getting headaches before it, I think that it's just normal ME headaches.
I can only take Panadol or Nurofen while on LDN, anything with codeine will cause a reaction similar to an opiod overdose. My specialist doesn't know what it'd look like, so mum took all meds with codeine out of my room. My memory is so bad; I thought Mersyndol didn't have codeine!!
The good (academic) news:
I got my SAC in the mail last week, and I got a "Very High", which means my mark is in the 80% - 100% range. I think I got an A+, but after I saw that I got higher than a B, I was so happy I couldn't be bothered calculating my result as a percentage. So that's brilliant, because it counts for my work from Weeks 4-7! I'm really happy, but worried about my next SAC. It sounds rather complex.
Fail!!! (Or "brain fog" in the ME world)
I thought my SAC was this week, and that's why the Distance Education people had posted the SAC to my mum (my supervisor) last week. I got my weeks confused. This week is Week 13, which is more calculus/differentiation, but Weeks 14 and 15 are the SAC. It's a project on calculus/differentiation, and it's supposed to take no more than 7hrs in total. Or something like that. The week after that (Week 16) I have another SAC, which is a test-format SAC on, I guess, calculus/differentiation. Then I think it's holidays. So I'll be really busy for the next few weeks!! Although, I've already completed this week's required homework, and my teacher is visiting on Tuesday, so I can show her what I'm having trouble with, and we can work out what amendments to the requirements would be best for me.
Birthday presents:
I was finally able to go out a week or so ago and buy a new pair of tracksuit pants (one I bought in January stretched strangely, so now they're too long to wear. The fabric was waaaay too stretchy!! (On the old pair!) I still need to get this new pair taken up at the tailor's. I also bought new winter pyjamas, and a hoodie that matches them. Plus slippers. I figured I may as well get really comfortable pyjamas, seeing as I spend so much time in them! I got one blue pair (paisely blue/aqua with a royal blue top) and a purple pair (white/purple striped pants with a purple top.) I still want to buy a dressing gown, though. One of those warm ones. I haven't found one yet, but I'll keep looking! I used my gift card and some of the money I got for my birthday. There was a huge special on at that particular store, which was great! I may even get a second hoodie from there; quite cheap, very comfortable and warm.
Sleep:
My sleep is all over the place. Most nights I'm up until 6am, or until I get a headache, nausea and dizziness, (from lack of sleep) so that I have to lie down with my eyes closed, and not move. Last night, though, I went to bed at 11.25pm, woke at 3.30am, and a few times in between. I've been up since. It's about 5.10am now, so I'm going to try and sleep. I can never catch up on sleep, because in the mornings (7.30am - 9am) there's "getting ready for school noise" and in the afternoons/evenings there's "arriving home/playing PS2, etc/getting dinner ready noise" So I really need to get my sleep sorted. I have no idea how to, though. Any ideas? (Apart from anything sleep hygeine related; that's what got my sleep into this freaky pattern in the first place!)
Thanks so much for reading. Any comments, feedback, or tips would be greatly appreciated! Take care.
Wednesday, May 12, 2010
It's International ME/CFS Awareness Day!!!
Just a short post, I think. It's quite late already, and I have a personal training session in the afternoon.
A link, for the uninitiated!
Okay, first of all: What is ME/CFS/CFIDS? Check out this link if you don't know what it is, want to know more, or are just curious.
(This link was posted on Twitter by @Stroopwaffle, and written by @DiamonDie. (Both ME/CFS sufferers; @Stroopwaffle is bedbound and unable to sit up.)
http://chronic-fatigue-syndrome.suite101.com/article.cfm/basics_of_cfsme
How to help, and what not to say/do:
My experience has been one of frustration, exhaustion, confusion and intolerance. ME/CFS is not an illness that is "in your head." Someone who suffers from it isn't "totally crazy and an attention seeking b*tch." I know I don't want pity; I want understanding, people to care, instead of dismissing ME/CFS completely. (And by doing that, they dismiss/disregard me.)
A kind word, offers of help - whether it's bringing someone a meal, or offering to help them with their grocery shopping. Even a smile, or a comment like "I love your haircut, it looks BRILLIANT!!" will make me happy for the next week, at least! You see, it's the small things that count; but money needs to be put into research. Please consider donating.
A short history:
I got EBV at the age of 7; and it started with sore throats, every day. Then I got muscular-skeletal pain; mostly in my legs. Then the post-exertional malaise. When I went to the doctors, they would say I was either lazy, depressed, depressed and anxious or just needed more exercise. The reason for the pain was that "your legs are too long for your body."
By the time I was 9 I had a cancer scare, and that's when my severe spinal/back pain began. I was given an injection of morphine; which broke the cycle of "severe muscular back spasms."
I developed the insomnia aspect at the age of 10 or 11; I'd go to sleep at 11pm, wake at 3am, then stay awake for at least 2hrs. Apparently I was still depressed. (Rather, I was furious at doctors who wouldn't listen as soon as they saw I didn't have anaemia.)
At the end of Grade 6 (my final year of primary school) I developed pneumonia and a collapsed lung. It's proven that a secondary infection in ME/CFS leads to a rapid decline in health.
By the time I'd "recovered" (I still can't sing; I run out of breath all the time, but there are no test abnormalities) from pneumonia, I was in Year 7, the first year of high school.
The first semester was alright, but my PE teacher would yell at me; she was convinced I wasn't trying. I would stay up until 3am studying, every night, getting 3hrs broken sleep at the most.
But by second semester, my teachers were saying I'd forget to bring a book to class, forget deadlines for homework, etc. And all my teachers said "Something is wrong, Alex is so conscientious!"
I finally found a GP who referred me to an paediactric ME/CFS specialist. This was in December of 2004, when I was at the end of Year 7.
Things have just gone downhill; my case was ignored until I was beyond help. I still see this specialist, though she is really only good for filling forms about my illness and writing prescriptions.
What it's like to be me at the moment:
I have severe muscular-skeletal pain. It feels like there are thousands of needles stabbing from inside your bones. My muscles ache, cramp and spasm.
My limbs feel like they are filled with lead; every step and movement is an enourmous effort.
My spinal/back pain can leave me bedbound, unable to move for up to 6 hours. It's those times I'm so grateful I have an iPod.
I live, pretty much, in my room. (In bed, propped up by pillows, or lying down, immobile.)
I don't sleep like normal people, and I never wake refreshed. I wake every 10mins - 50mins, and at the moment I am awake until 6am. No one can help my sleep; I've tried everything.
My short term memory is almost gone. I forget words. I forget what day it is, where I am, or, to give you an example, I can have a key in my hand, but not know what it's called, or how to use it. Even if I did, I might not have the strength to reach the lock! I can't hold conversations very often; it is overwhelming. I can't understand or keep up with it.
I am overwhelmed by the slightest noise, bright colours, smells (anything from dinner cooking to a deodorant.) This means that I develop intense headache/nausea when I am watching television, and someone walks around the room, eats, or talks.
I am lonely, and sick of being told "it's all in your head" or "stop whining; you're not sick" Studying by distance education means I am even more lonely and isolated. I struggle to study one subject; to study for 6hrs means I will be bedbound for the next 3 days or more. But that way I get all my homework done on the weekend.
Why am I telling you this?
Because people seem to relate best to personal stories; I have kept mine brief. To catalogue all my ME/CFS experiences between the ages of 7 and 19 would be too long a post! I only hope that you read this, and take something away from it. Whether it spurs you to donate to your state's ME/CFS support/awareness group, or to promote awareness, or to volunteer. There are many who are sicker than me, and would need more help. I have my mother. I'd be lost and unable to care for myself without her.
Finally:
I hope you've already bought your blue ribbons, or purple, for Fibromyalgia!! Wear them with pride!!(They can be purchased from your state's ME/CFS support/awareness group) Raise awareness, be a voice for those who are without one. Please.
A link, for the uninitiated!
Okay, first of all: What is ME/CFS/CFIDS? Check out this link if you don't know what it is, want to know more, or are just curious.
(This link was posted on Twitter by @Stroopwaffle, and written by @DiamonDie. (Both ME/CFS sufferers; @Stroopwaffle is bedbound and unable to sit up.)
http://chronic-fatigue-syndrome.suite101.com/article.cfm/basics_of_cfsme
How to help, and what not to say/do:
My experience has been one of frustration, exhaustion, confusion and intolerance. ME/CFS is not an illness that is "in your head." Someone who suffers from it isn't "totally crazy and an attention seeking b*tch." I know I don't want pity; I want understanding, people to care, instead of dismissing ME/CFS completely. (And by doing that, they dismiss/disregard me.)
A kind word, offers of help - whether it's bringing someone a meal, or offering to help them with their grocery shopping. Even a smile, or a comment like "I love your haircut, it looks BRILLIANT!!" will make me happy for the next week, at least! You see, it's the small things that count; but money needs to be put into research. Please consider donating.
A short history:
I got EBV at the age of 7; and it started with sore throats, every day. Then I got muscular-skeletal pain; mostly in my legs. Then the post-exertional malaise. When I went to the doctors, they would say I was either lazy, depressed, depressed and anxious or just needed more exercise. The reason for the pain was that "your legs are too long for your body."
By the time I was 9 I had a cancer scare, and that's when my severe spinal/back pain began. I was given an injection of morphine; which broke the cycle of "severe muscular back spasms."
I developed the insomnia aspect at the age of 10 or 11; I'd go to sleep at 11pm, wake at 3am, then stay awake for at least 2hrs. Apparently I was still depressed. (Rather, I was furious at doctors who wouldn't listen as soon as they saw I didn't have anaemia.)
At the end of Grade 6 (my final year of primary school) I developed pneumonia and a collapsed lung. It's proven that a secondary infection in ME/CFS leads to a rapid decline in health.
By the time I'd "recovered" (I still can't sing; I run out of breath all the time, but there are no test abnormalities) from pneumonia, I was in Year 7, the first year of high school.
The first semester was alright, but my PE teacher would yell at me; she was convinced I wasn't trying. I would stay up until 3am studying, every night, getting 3hrs broken sleep at the most.
But by second semester, my teachers were saying I'd forget to bring a book to class, forget deadlines for homework, etc. And all my teachers said "Something is wrong, Alex is so conscientious!"
I finally found a GP who referred me to an paediactric ME/CFS specialist. This was in December of 2004, when I was at the end of Year 7.
Things have just gone downhill; my case was ignored until I was beyond help. I still see this specialist, though she is really only good for filling forms about my illness and writing prescriptions.
What it's like to be me at the moment:
I have severe muscular-skeletal pain. It feels like there are thousands of needles stabbing from inside your bones. My muscles ache, cramp and spasm.
My limbs feel like they are filled with lead; every step and movement is an enourmous effort.
My spinal/back pain can leave me bedbound, unable to move for up to 6 hours. It's those times I'm so grateful I have an iPod.
I live, pretty much, in my room. (In bed, propped up by pillows, or lying down, immobile.)
I don't sleep like normal people, and I never wake refreshed. I wake every 10mins - 50mins, and at the moment I am awake until 6am. No one can help my sleep; I've tried everything.
My short term memory is almost gone. I forget words. I forget what day it is, where I am, or, to give you an example, I can have a key in my hand, but not know what it's called, or how to use it. Even if I did, I might not have the strength to reach the lock! I can't hold conversations very often; it is overwhelming. I can't understand or keep up with it.
I am overwhelmed by the slightest noise, bright colours, smells (anything from dinner cooking to a deodorant.) This means that I develop intense headache/nausea when I am watching television, and someone walks around the room, eats, or talks.
I am lonely, and sick of being told "it's all in your head" or "stop whining; you're not sick" Studying by distance education means I am even more lonely and isolated. I struggle to study one subject; to study for 6hrs means I will be bedbound for the next 3 days or more. But that way I get all my homework done on the weekend.
Why am I telling you this?
Because people seem to relate best to personal stories; I have kept mine brief. To catalogue all my ME/CFS experiences between the ages of 7 and 19 would be too long a post! I only hope that you read this, and take something away from it. Whether it spurs you to donate to your state's ME/CFS support/awareness group, or to promote awareness, or to volunteer. There are many who are sicker than me, and would need more help. I have my mother. I'd be lost and unable to care for myself without her.
Finally:
I hope you've already bought your blue ribbons, or purple, for Fibromyalgia!! Wear them with pride!!(They can be purchased from your state's ME/CFS support/awareness group) Raise awareness, be a voice for those who are without one. Please.
Saturday, May 1, 2010
Distance Education
Good news!!!I got my work for Week 9 completed last Saturday and my work for Week 10 was finished on Thursday, so Mum was able to mail them both on Friday. I felt so much better once I'd finished my work; like I wasn't weighed under anymore. There's just so much work that it overwhelms me & makes me sicker. But I got my work back (Weeks 1-4) and I got everything right, except for one or two questions. My teacher thinks I have a "really good understanding" of all the concepts, even graphs!! So if I do that well on my SAC, I should end up with a B or an A as my mark so far. Which is brilliant, I've never been a good maths student! She's still marking the SACs for my 'class', but I should receive it soon. I use registered mail for all my distance education work & paperwork/forms; it's reliable, can't get lost, and you get a delivery receipt. I've got a SAC in 3-4 weeks, I think it's on differentiation/calculus, so I should be okay with that one. I'm just not great at using my calculator. It's a TI-89 Titanium. (If anyone has/had one and can give me some tips on how to use it, I'll be eternally grateful!!)
Sleep...
I haven't been sleeping much at all. Two hours' broken sleep some nights, 5 hours' broken sleep other nights. The longest I can stay asleep for is about an hour. So I wake hourly on a good night, but every 10mins on a bad night. Today I went to bed at about 1.20am, fell asleep around 2.15am; woke at 6.15am and 8.40am. (Haven't slept since.) That was a pretty good sleep. I just wish I could've slept 'til midday so I could have, like, 8-9 hours of sleep before maths tutoring. (Which is at 2pm.) If I could sleep for 7 hours a night, without waking, my pain would be greatly reduced, I'd be able to function and I wouldn't feel like an early onset dementia patient!! (Seriously; I forget sentences, the names of objects, where I'm going, what a key does AND what it's called... I can get to the front door, have my key in my hand and go: "I don't know what it's called or what it does. How do I get in?")
Another "specialist"
Mum did some more research & found a doctor who is about 1/2 an hour from us, and he actually TREATS pain!! With real painkillers!! Goodbye, Panadeine Forte, hello sleep and pain relief!! He also uses LDN, which is highly recommended by some overseas Twitter friends. One problem: no appointments until SEPTEMBER. I'm on the cancellation list, but as soon as I can manage a phone call, I'll ring up and explain my situation; Year 12, immense pain, sleep deprivation, exams in October/November, my need to graduate next year. Hopefully I can get an earlier appointment. Fingers crossed!! But don't worry, I'm not getting my hopes up; aside from pain relief. I'm not going to be devastated and have a relapse caused by another doctor making promises no one can keep.
Organisation...
I'm usually an organised person when it comes to schoolwork, study and homework, but it's got so much harder now I'm this ill. Plus I get panicked and stressed very easily, so once I mail something, I worry that it hasn't got there/I wrote the wrong name or address/it's been lost. So I'm an anxious person to say the least. This year, I've let things slip. The work being 7 weeks late meant I slid downhill and was constantly overwhelmed. So the necessary forms aren't being filled in on time (also because they're sent 5 weeks late) but it's not helping. Thankfully, there's email, which I can check in bed on my iPhone!! So I have some Special Provisions info for my exams in my email inbox, plus the booklet is in the mail and should arrive in time for my Wednesday appointment with my usual "specialist." I also need to change one of the exams. It starts at 9.45am or something, and I can't function until after midday. So I need aforementioned "specialist" to put in a request for a change of time. She's great with paperwork and the "typical" ME/CFS cases, but isn't good for severe cases. Also she quote: "won't think outside the box in regard to treatments." End quote. Even L-Carnitine is to risky for her. So it's Melatonin (never worked) or anti-depressants. (Never worked, made me really sick.) So, yeah. I'd better be more organised for orientation this summer and school next year!! Hope my uniform still fits; I've been eating 3 meals a day some days!!!
Formspring.me:
I got some rather abusive/offensive questions on formspring.me when I said "ask me something" on Facebook & Twitter. I have an idea of who it was, and one of the questions I didn't answer because it would give away information like my location. (Stupid idea on the internet.) So I've disabled the "anonymous" option on questions. But feel free to ask me any questions that are civil and not offensive. =)
http://www.formspring.me/thecabbagestalk
I'll blog again soon:
Thanks for your comments, they mean the world to me. It's nice to not be called a liar", "whinger" or "faker" just because I try to raise awareness about ME/CFS and actually talk/blog/tweet about it!!
Hope you're all well, take care.
Alex. x
Sleep...
I haven't been sleeping much at all. Two hours' broken sleep some nights, 5 hours' broken sleep other nights. The longest I can stay asleep for is about an hour. So I wake hourly on a good night, but every 10mins on a bad night. Today I went to bed at about 1.20am, fell asleep around 2.15am; woke at 6.15am and 8.40am. (Haven't slept since.) That was a pretty good sleep. I just wish I could've slept 'til midday so I could have, like, 8-9 hours of sleep before maths tutoring. (Which is at 2pm.) If I could sleep for 7 hours a night, without waking, my pain would be greatly reduced, I'd be able to function and I wouldn't feel like an early onset dementia patient!! (Seriously; I forget sentences, the names of objects, where I'm going, what a key does AND what it's called... I can get to the front door, have my key in my hand and go: "I don't know what it's called or what it does. How do I get in?")
Another "specialist"
Mum did some more research & found a doctor who is about 1/2 an hour from us, and he actually TREATS pain!! With real painkillers!! Goodbye, Panadeine Forte, hello sleep and pain relief!! He also uses LDN, which is highly recommended by some overseas Twitter friends. One problem: no appointments until SEPTEMBER. I'm on the cancellation list, but as soon as I can manage a phone call, I'll ring up and explain my situation; Year 12, immense pain, sleep deprivation, exams in October/November, my need to graduate next year. Hopefully I can get an earlier appointment. Fingers crossed!! But don't worry, I'm not getting my hopes up; aside from pain relief. I'm not going to be devastated and have a relapse caused by another doctor making promises no one can keep.
Organisation...
I'm usually an organised person when it comes to schoolwork, study and homework, but it's got so much harder now I'm this ill. Plus I get panicked and stressed very easily, so once I mail something, I worry that it hasn't got there/I wrote the wrong name or address/it's been lost. So I'm an anxious person to say the least. This year, I've let things slip. The work being 7 weeks late meant I slid downhill and was constantly overwhelmed. So the necessary forms aren't being filled in on time (also because they're sent 5 weeks late) but it's not helping. Thankfully, there's email, which I can check in bed on my iPhone!! So I have some Special Provisions info for my exams in my email inbox, plus the booklet is in the mail and should arrive in time for my Wednesday appointment with my usual "specialist." I also need to change one of the exams. It starts at 9.45am or something, and I can't function until after midday. So I need aforementioned "specialist" to put in a request for a change of time. She's great with paperwork and the "typical" ME/CFS cases, but isn't good for severe cases. Also she quote: "won't think outside the box in regard to treatments." End quote. Even L-Carnitine is to risky for her. So it's Melatonin (never worked) or anti-depressants. (Never worked, made me really sick.) So, yeah. I'd better be more organised for orientation this summer and school next year!! Hope my uniform still fits; I've been eating 3 meals a day some days!!!
Formspring.me:
I got some rather abusive/offensive questions on formspring.me when I said "ask me something" on Facebook & Twitter. I have an idea of who it was, and one of the questions I didn't answer because it would give away information like my location. (Stupid idea on the internet.) So I've disabled the "anonymous" option on questions. But feel free to ask me any questions that are civil and not offensive. =)
http://www.formspring.me/thecabbagestalk
I'll blog again soon:
Thanks for your comments, they mean the world to me. It's nice to not be called a liar", "whinger" or "faker" just because I try to raise awareness about ME/CFS and actually talk/blog/tweet about it!!
Hope you're all well, take care.
Alex. x
Wednesday, April 21, 2010
Doctor Who, & a little good news!
The 11th Doctor!!
I watched the first episode with Matt Smith, & it took a while, but I've got to say that I do like him... A lot. He's quirky & funny, but is lacking the dress sense of the 10th Doctor. (Who is still my all-time fave!) I'm going to keep watching. I also like Amy, his soon to be (I presume) companion. She reminds me of Donna! I really liked the episode, though it was slow in a few parts. I absolutely hated the complete overhaul of the theme music, logo, TARDIS interior & sonic screwdriver. I loved the continuity of "wibbly-wobbly... timey-wimey..." It was brilliant, & I love anything that links back to my fave Doctor. I'm counting down the hours (practically) until the next episode: Sunday night!! If any of my Twitter followers are reading this; please no spoilers!! =P
Now, the good news:
My mum mailed my SAC & SEND tasks from Weeks 1-4 yesterday, so if the address/name/location are correct, my teacher should receive it today. (Wednesday.) That means I'm no longer behind in my work!!
Complete exhaustion...
After the marathon study session & maths tutoring & finishing my SAC, I was exhausted the next day, Sunday. I expected that. But it's now Wednesday & I can't see any improvement. I'm doing 3x the work I did when I attended a real school, I have no social life/contact & receiving any form of communication is really dodgy. You never know if it'll be a month late, on time, or 7 weeks late. So the stress from that isn't helping things at all. I still haven't been able to get out of bed most days until 4pm. My alarm goes off at 2pm, but I'm too weak & dead tired to move. So I just lie there.
Week 9 SEND tasks:
I obviously can't work on the Week 9 SEND tasks tomorrow, as I have a personal training session. (Yes, I'm still persevering with that.) So I'll have to do it on Thursday, if I have any ability to sit & study. I'll have to take meds to do so, but that's a sacrifice I'm willing to make! (It's really hard to get these particular meds.) It's a short bit on the "tangent function" & something else where you mark key points on 2 graphs, then add them to come up with an in-between graph. I'm just so wiped out, it's terrifying me. Also, it's about 5am, I haven't slept yet, & need my sleep really badly.
Good morning/goodnight...
It's getting early in the morning, so I'll attempt sleep for the 1000th time! I hope my readers are well, & if anyone has any feedback, tips, or just would like to chat about ME/CFS, or Doctor Who, or something, then comment!! I read all of them! =D
I watched the first episode with Matt Smith, & it took a while, but I've got to say that I do like him... A lot. He's quirky & funny, but is lacking the dress sense of the 10th Doctor. (Who is still my all-time fave!) I'm going to keep watching. I also like Amy, his soon to be (I presume) companion. She reminds me of Donna! I really liked the episode, though it was slow in a few parts. I absolutely hated the complete overhaul of the theme music, logo, TARDIS interior & sonic screwdriver. I loved the continuity of "wibbly-wobbly... timey-wimey..." It was brilliant, & I love anything that links back to my fave Doctor. I'm counting down the hours (practically) until the next episode: Sunday night!! If any of my Twitter followers are reading this; please no spoilers!! =P
Now, the good news:
My mum mailed my SAC & SEND tasks from Weeks 1-4 yesterday, so if the address/name/location are correct, my teacher should receive it today. (Wednesday.) That means I'm no longer behind in my work!!
Complete exhaustion...
After the marathon study session & maths tutoring & finishing my SAC, I was exhausted the next day, Sunday. I expected that. But it's now Wednesday & I can't see any improvement. I'm doing 3x the work I did when I attended a real school, I have no social life/contact & receiving any form of communication is really dodgy. You never know if it'll be a month late, on time, or 7 weeks late. So the stress from that isn't helping things at all. I still haven't been able to get out of bed most days until 4pm. My alarm goes off at 2pm, but I'm too weak & dead tired to move. So I just lie there.
Week 9 SEND tasks:
I obviously can't work on the Week 9 SEND tasks tomorrow, as I have a personal training session. (Yes, I'm still persevering with that.) So I'll have to do it on Thursday, if I have any ability to sit & study. I'll have to take meds to do so, but that's a sacrifice I'm willing to make! (It's really hard to get these particular meds.) It's a short bit on the "tangent function" & something else where you mark key points on 2 graphs, then add them to come up with an in-between graph. I'm just so wiped out, it's terrifying me. Also, it's about 5am, I haven't slept yet, & need my sleep really badly.
Good morning/goodnight...
It's getting early in the morning, so I'll attempt sleep for the 1000th time! I hope my readers are well, & if anyone has any feedback, tips, or just would like to chat about ME/CFS, or Doctor Who, or something, then comment!! I read all of them! =D
Sunday, April 18, 2010
Lots of stress, too much study...
First SAC of the year...
My SAC didn't arrive in the mail like it was supposed to. So my teacher tried emailing it. Her attachment kept crashing the iMac. So she sent it in the message body of the email, & left work. At 4.15pm. At 5.02pm the message arrived, but the SAC was riddled with errors - a Yen symbol replaced the infinity symbol throughout the SAC, etc. But when I emailed my teacher, she said that it didn't appear that way on her computer, but that the Yen symbol did mean infinity. So I had several panic attacks & became hysterical. (The idea that I was going to fail & I'd missed basic concepts of maths was overwhelming.)
Then my mum left voicemail messages for the student wellbeing person, the year level co-ordinator, the Principal & my teacher outlining the situation they'd placed me in. Including the fact that THEY sent my work 7 weeks late & expected me to magically do 42 - 56hrs of work over the holidays to catch up. Despite the fact I'd explained my situation & had applied on medical grounds.
So it arrived in the mail the next day, (Thursday afternoon) my teacher apologised, as did the year level co-ordinator & the Principal. The SAC counts for the work from Weeks 5, 6 & 7, & I have an extension until this Thursday! I started it on Friday, & finished it today, after tutoring. I texted my tutor last week with a list of the concepts I was finding really hard (graphs; particularly reflections & dilations, as well as circular functions) so we revised that. Luckily it helped some with the SAC. I think I'll get an okay mark. I don't wanna jinx it, lol.
Maths tutoring...
So I had Maths tutoring yesterday, & it went for 2.5 - 3hrs! After that I worked on my SAC. Then I ate... I ended up starving by the end of it! But with tutoring, we covered all of Week 9 (this week beginning Monday) & it was relatively short. Basically just the "tangent function" & some odd thing where you add intercepts to come up with an in-between graph. F**k knows why you'd want to, but, yeah. I learned that. Also, I hate circular functions, I hate graphs, so the "tangent function" is irritating. It's a graph that's circular functions. I guess I just hate graphs & circular functions because I'm not that good at them!
So after resting today, then sending my work off on Monday, I'll attempt the SEND tasks for Week 9 on Tuesday, maybe. If I don't get sick, & everything goes according to plan, I should be on track until the next SAC. It's on differentiation. (Calculus...) I like it more than graphs, that's for sure!
Sleep...
I've been trying to go to bed between midnight & 1am for the past week or something, but, as you can see, tonight, I ceebz. I'm wide awake, it's almost 2.30am, & there were some really good shows taped on the Foxtel iQ. Plus I wanted to stay up until I wasn't dizzy/feeling sick/had a headache from overdoing it yesterday with all that maths! I've tried reading to make me sleepy; no matter what I read, whether it's tax law, news sites, actual newspapers, novels, Shakespeare, poetry, blogs, medical information I've printed off, medical sites, blogs; anything, it doesn't help me sleep. Sometimes just watching tv or DVDs on my laptop until I'm sleepy works. That's why it's great having all those Skins & The OC DVDs! But I am hoping to get a serious sleep pattern going soon, in anticipation of exams & (hopefully) school & graduation next year. I still want a decent ENTER, but right now, I'll settle for getting back to school!
Goodnight!
Well, it's nearly 2.30am, so I'm going to try & sleep now. I love it when anyone posts a comment, or gives feedback. It's nice to know people out there are actually reading this, & some of you understand. I've since downloaded a lot more apps for my iPhone, so there are heaps of things to keep me occupied when I can't sleep, am bored during the day, or want to multi task... Watch tv & use an iPhone. =p Also, is it just me, or are The Killers mentioned in the song "Boys Boys Boys" by Lady GaGa? I could swear they are. Then again, I have ME/CFS induced brain fog!! Hope anyone who reads this is well... Or as well as possible. =)
My SAC didn't arrive in the mail like it was supposed to. So my teacher tried emailing it. Her attachment kept crashing the iMac. So she sent it in the message body of the email, & left work. At 4.15pm. At 5.02pm the message arrived, but the SAC was riddled with errors - a Yen symbol replaced the infinity symbol throughout the SAC, etc. But when I emailed my teacher, she said that it didn't appear that way on her computer, but that the Yen symbol did mean infinity. So I had several panic attacks & became hysterical. (The idea that I was going to fail & I'd missed basic concepts of maths was overwhelming.)
Then my mum left voicemail messages for the student wellbeing person, the year level co-ordinator, the Principal & my teacher outlining the situation they'd placed me in. Including the fact that THEY sent my work 7 weeks late & expected me to magically do 42 - 56hrs of work over the holidays to catch up. Despite the fact I'd explained my situation & had applied on medical grounds.
So it arrived in the mail the next day, (Thursday afternoon) my teacher apologised, as did the year level co-ordinator & the Principal. The SAC counts for the work from Weeks 5, 6 & 7, & I have an extension until this Thursday! I started it on Friday, & finished it today, after tutoring. I texted my tutor last week with a list of the concepts I was finding really hard (graphs; particularly reflections & dilations, as well as circular functions) so we revised that. Luckily it helped some with the SAC. I think I'll get an okay mark. I don't wanna jinx it, lol.
Maths tutoring...
So I had Maths tutoring yesterday, & it went for 2.5 - 3hrs! After that I worked on my SAC. Then I ate... I ended up starving by the end of it! But with tutoring, we covered all of Week 9 (this week beginning Monday) & it was relatively short. Basically just the "tangent function" & some odd thing where you add intercepts to come up with an in-between graph. F**k knows why you'd want to, but, yeah. I learned that. Also, I hate circular functions, I hate graphs, so the "tangent function" is irritating. It's a graph that's circular functions. I guess I just hate graphs & circular functions because I'm not that good at them!
So after resting today, then sending my work off on Monday, I'll attempt the SEND tasks for Week 9 on Tuesday, maybe. If I don't get sick, & everything goes according to plan, I should be on track until the next SAC. It's on differentiation. (Calculus...) I like it more than graphs, that's for sure!
Sleep...
I've been trying to go to bed between midnight & 1am for the past week or something, but, as you can see, tonight, I ceebz. I'm wide awake, it's almost 2.30am, & there were some really good shows taped on the Foxtel iQ. Plus I wanted to stay up until I wasn't dizzy/feeling sick/had a headache from overdoing it yesterday with all that maths! I've tried reading to make me sleepy; no matter what I read, whether it's tax law, news sites, actual newspapers, novels, Shakespeare, poetry, blogs, medical information I've printed off, medical sites, blogs; anything, it doesn't help me sleep. Sometimes just watching tv or DVDs on my laptop until I'm sleepy works. That's why it's great having all those Skins & The OC DVDs! But I am hoping to get a serious sleep pattern going soon, in anticipation of exams & (hopefully) school & graduation next year. I still want a decent ENTER, but right now, I'll settle for getting back to school!
Goodnight!
Well, it's nearly 2.30am, so I'm going to try & sleep now. I love it when anyone posts a comment, or gives feedback. It's nice to know people out there are actually reading this, & some of you understand. I've since downloaded a lot more apps for my iPhone, so there are heaps of things to keep me occupied when I can't sleep, am bored during the day, or want to multi task... Watch tv & use an iPhone. =p Also, is it just me, or are The Killers mentioned in the song "Boys Boys Boys" by Lady GaGa? I could swear they are. Then again, I have ME/CFS induced brain fog!! Hope anyone who reads this is well... Or as well as possible. =)
Saturday, April 10, 2010
iPhone!!!!
iPhone!!!!
I got an iPhone today!! I'm so excited!!! It's a black, 32GB iPhone. It's awesome, but I only spent about 10mins using it; then I put a protective screen cover on it, & you're supposed to wait 12hrs before you turn it on. I put it on at 2.50pm. It's now 4.30pm, so I may just wait 6hrs. That way I can load some apps on to it tonight! One of my friends recommended Echofon for a Twitter app, & suggested I get a Facebook app. Any other suggestions for games/apps I should get? My brother loves something called "Doodle jump" ... Or something. Don't quote me on that. There's also a horrific app where you can kill a cartoon bunny. As a 13-year-old boy, he loves that app. lol.
It took a lot of persuasion, from me & my mum, but my father finally caved in; we ended his contract a couple of months early, paid an exit fee, then used my sim card for the iPhone, so I've still got the same number, just my father has the more expensive plan. =o (His is a $39 cap + $14 for the iPhone per month, mine is a $29 cap + $8 of 500MB internet/data use per month.) My mum argued that seeing as I'm up all hours, & am at home, don't cost much (you know, I don't go out, so no expensive shoes, dresses, concert tickets, whatever) it'd be a great thing to occupy me. Plus I deserve it. =p And a lot of my friends have them. When it was first released, my contract had expired, but my father said it was too expensive to get. (It was, it was probably a $69 cap per month + $$ for the iPhone!) So now it's cheaper, I have less to think about, like if I forget my iPod, I have my iPhone, & I don't have to constantly restart my phone to get access to internet at 3am. It can access the home wi-fi. =D I can't wait to find out all the features & apps I can get!!
Maths...
I had tutoring at 9.30am today, last night I went on a Starlight escape to a comedian's show, & I didn't get to sleep until about 1.40am, woke at 6am, & didn't sleep again. So I went on Twitter, complained. (As always! =p) Then after a few hours I got up, took my meds, had a shower, had breakfast & got ready. I went pretty well; we've nearly finished week 7, so I'm up to date in that sense, but as for the SEND tasks, I'm up to... Week 5, which I've just started. My SAC should arrive on Monday, & I have all week to do it, (well, I only have 50mins for it, but I can do it any day, or over a few days) & tutoring is on the weekend, when we'll start on week 8. I just hope I can catch up to week 7 before next weekend. I did ring my teacher. (Well, my mum rang my teacher, who called me.) She said I can do half the SEND tasks if I want, use my calculator, & skip the analysis questions, unless I think I can do them quickly. I just need to send in enough work from each week to show that I grasp the concepts. I really do wish my work hadn't been so late. It's not like I need any more stress!
Doctor Who
The Easter episode of Doctor Who is airing on iView (on the ABC's site) on the 16/04, & it's on tv on the 18/04!! I'm really interested. I want to see what sort of a Doctor Matt Smith will be, & I'm willing to give him a decent chance. But David Tennant will always be my Doctor! I've heard he's quite quirky, which sounds good. A Doctor like Christopher Eccleston's takes a lot of adjustment. But he could be funny, at times, which I liked.
I downloaded a whole lot of awesome desktops/backgrounds/wallpapers the other night; all of the 10th Doctor. I picked the ones that look amazing, or mean something to me, because of the image or the quote. They've got great imagery with quotes & all sorts of things! It's amazing how much great stuff is on Google images. Other wallpapers are just awesome because it's the 10th Doctor. =p
Pain...
I'm in more pain, my back is pretty bad today because I haven't slept enough, haven't spent any time lying down since 8.30am, & have done a lot today. I went to one store nearby to get the protective screen cover & case for my iPhone, then went to the big shopping centre to get the iPhone. The main store had sold out (within 2hrs of me phoning) but the kiosk on the next level had some, so that was good. It was a lot of walking, though. Improving my posture hasn't improved my pain yet; it's still getting worse, & it's migrating. It used to always be severe lower back pain that radiated up my spine, now it can be in the middle of my spine or even in my neck. Or just my whole back & spine. It's really hard to cope with. Also, I had blurred vision the other night, which scared me, because it hasn't happened since I was on the Gabapentin. It went away eventually, & I still managed to do some maths hw, which was good. =)
Hello?
I don't know if anyone reads this anymore, because I'm not getting any comments... Seriously, I don't mind whether it's a recommendation for apps, how to layout my blog, or your experiences with ME/CFS; anything positive/constructive, really. I'm happy to hear it! I hope I am reaching someone, rather than just blogging for no reason.
I got an iPhone today!! I'm so excited!!! It's a black, 32GB iPhone. It's awesome, but I only spent about 10mins using it; then I put a protective screen cover on it, & you're supposed to wait 12hrs before you turn it on. I put it on at 2.50pm. It's now 4.30pm, so I may just wait 6hrs. That way I can load some apps on to it tonight! One of my friends recommended Echofon for a Twitter app, & suggested I get a Facebook app. Any other suggestions for games/apps I should get? My brother loves something called "Doodle jump" ... Or something. Don't quote me on that. There's also a horrific app where you can kill a cartoon bunny. As a 13-year-old boy, he loves that app. lol.
It took a lot of persuasion, from me & my mum, but my father finally caved in; we ended his contract a couple of months early, paid an exit fee, then used my sim card for the iPhone, so I've still got the same number, just my father has the more expensive plan. =o (His is a $39 cap + $14 for the iPhone per month, mine is a $29 cap + $8 of 500MB internet/data use per month.) My mum argued that seeing as I'm up all hours, & am at home, don't cost much (you know, I don't go out, so no expensive shoes, dresses, concert tickets, whatever) it'd be a great thing to occupy me. Plus I deserve it. =p And a lot of my friends have them. When it was first released, my contract had expired, but my father said it was too expensive to get. (It was, it was probably a $69 cap per month + $$ for the iPhone!) So now it's cheaper, I have less to think about, like if I forget my iPod, I have my iPhone, & I don't have to constantly restart my phone to get access to internet at 3am. It can access the home wi-fi. =D I can't wait to find out all the features & apps I can get!!
Maths...
I had tutoring at 9.30am today, last night I went on a Starlight escape to a comedian's show, & I didn't get to sleep until about 1.40am, woke at 6am, & didn't sleep again. So I went on Twitter, complained. (As always! =p) Then after a few hours I got up, took my meds, had a shower, had breakfast & got ready. I went pretty well; we've nearly finished week 7, so I'm up to date in that sense, but as for the SEND tasks, I'm up to... Week 5, which I've just started. My SAC should arrive on Monday, & I have all week to do it, (well, I only have 50mins for it, but I can do it any day, or over a few days) & tutoring is on the weekend, when we'll start on week 8. I just hope I can catch up to week 7 before next weekend. I did ring my teacher. (Well, my mum rang my teacher, who called me.) She said I can do half the SEND tasks if I want, use my calculator, & skip the analysis questions, unless I think I can do them quickly. I just need to send in enough work from each week to show that I grasp the concepts. I really do wish my work hadn't been so late. It's not like I need any more stress!
Doctor Who
The Easter episode of Doctor Who is airing on iView (on the ABC's site) on the 16/04, & it's on tv on the 18/04!! I'm really interested. I want to see what sort of a Doctor Matt Smith will be, & I'm willing to give him a decent chance. But David Tennant will always be my Doctor! I've heard he's quite quirky, which sounds good. A Doctor like Christopher Eccleston's takes a lot of adjustment. But he could be funny, at times, which I liked.
I downloaded a whole lot of awesome desktops/backgrounds/wallpapers the other night; all of the 10th Doctor. I picked the ones that look amazing, or mean something to me, because of the image or the quote. They've got great imagery with quotes & all sorts of things! It's amazing how much great stuff is on Google images. Other wallpapers are just awesome because it's the 10th Doctor. =p
Pain...
I'm in more pain, my back is pretty bad today because I haven't slept enough, haven't spent any time lying down since 8.30am, & have done a lot today. I went to one store nearby to get the protective screen cover & case for my iPhone, then went to the big shopping centre to get the iPhone. The main store had sold out (within 2hrs of me phoning) but the kiosk on the next level had some, so that was good. It was a lot of walking, though. Improving my posture hasn't improved my pain yet; it's still getting worse, & it's migrating. It used to always be severe lower back pain that radiated up my spine, now it can be in the middle of my spine or even in my neck. Or just my whole back & spine. It's really hard to cope with. Also, I had blurred vision the other night, which scared me, because it hasn't happened since I was on the Gabapentin. It went away eventually, & I still managed to do some maths hw, which was good. =)
Hello?
I don't know if anyone reads this anymore, because I'm not getting any comments... Seriously, I don't mind whether it's a recommendation for apps, how to layout my blog, or your experiences with ME/CFS; anything positive/constructive, really. I'm happy to hear it! I hope I am reaching someone, rather than just blogging for no reason.
Monday, April 5, 2010
Busy & stressed!
My past week:
On the 27/03 & 28/03 I had two hours of Maths tutoring each day to catch up; I'd missed the previous week's session because I went to see a movie with a friend, & it was my birthday that weekend. One of the worst ever. So it took me a while to recover from that. (In fact, I'm not sure I have recovered yet.)
On the 30/03 I had a dentist's appointment, which was exhausting & I also got my iPod fixed & looked at Sportsgirl.
Then on the 31/03 I had my first personal training session at the gym, which went well, but I was incredibly exhausted as my younger brother had a friend & the friend's younger brother at our place all day.
The next day (01/04) I had a hair cut/colour & it took a few hours, but it was nice to get out of the house & do something that didn't involve ME/CFS for once. Then I noticed a sale at Cotton On & the Bonds outlet, so I bought a loose top that matches my pajamas for $5 from Cotton On, a jacket & long sleeve t-shirt from the Bonds outlet. Then I was exhausted.
On Sunday (04/03) I went to the footy after an awful weekend, thanks to my father. I had a good time with my half-brother from Germany, his girlfriend & my family. (Excluding my father.) After the footy match we went to the Hilton to have a coffee & some snacks, then caught a taxi home.
My further exhaustion & feelings of being overwhelmed:
I got back at about 9.50pm last night, & had to shower & wash, dry, straighten my hair & do my Methods hw which I'd been too busy or wiped out to do all week. I've finally got all of week 1 ready to send in, & all of week 2 except for 1 question. Just 5 more weeks of work to be completed by the 11/04 & I'm set. Then I have a SAC the first week of term, but I'm allowed to take rest breaks, etc. plus my mum is supervising me. So that should quell some of my nerves/panic attacks/anxiety about exams/tests/SACs. I hope.
Sleep: (or lack thereof)
It's 4am & I haven't slept yet. My body is keeping me awake, despite the fact I've taken my meds, because it knows I have tutoring at 1pm, & my body thinks I'll oversleep. It's stupid. I need sleep for tutoring, so my body ensures I don't sleep before tutoring. It's torture & a waste of my valuable meds! I'm going to go insane from lack of sleep. I either get to sleep by 4am & wake every 10mins or get to sleep by 8am & wake every 30mins. Both are exhausting, both cannot be classified as sleep, & no one can help me. I'm on my own here. I've tried everything & nothing helps. Exercise seems to make it worse, stress obviously does & I'm stressed out of my mind.
So busy & so desperate to sleep:
I need to get to sleep!!! My half-brother from Germany & his girlfriend are coming over after tutoring for an early dinner & also so they can tell us about their trip through central Australia. I must study, I must pass, I must get a good mark, & I must return to school next year. The isolation is awful & so is being stuck at home. I just want the energy & ability to escape for a few days. I'm not coping anymore.
Expect another post soon, unless I get too sick to use my laptop again!
On the 27/03 & 28/03 I had two hours of Maths tutoring each day to catch up; I'd missed the previous week's session because I went to see a movie with a friend, & it was my birthday that weekend. One of the worst ever. So it took me a while to recover from that. (In fact, I'm not sure I have recovered yet.)
On the 30/03 I had a dentist's appointment, which was exhausting & I also got my iPod fixed & looked at Sportsgirl.
Then on the 31/03 I had my first personal training session at the gym, which went well, but I was incredibly exhausted as my younger brother had a friend & the friend's younger brother at our place all day.
The next day (01/04) I had a hair cut/colour & it took a few hours, but it was nice to get out of the house & do something that didn't involve ME/CFS for once. Then I noticed a sale at Cotton On & the Bonds outlet, so I bought a loose top that matches my pajamas for $5 from Cotton On, a jacket & long sleeve t-shirt from the Bonds outlet. Then I was exhausted.
On Sunday (04/03) I went to the footy after an awful weekend, thanks to my father. I had a good time with my half-brother from Germany, his girlfriend & my family. (Excluding my father.) After the footy match we went to the Hilton to have a coffee & some snacks, then caught a taxi home.
My further exhaustion & feelings of being overwhelmed:
I got back at about 9.50pm last night, & had to shower & wash, dry, straighten my hair & do my Methods hw which I'd been too busy or wiped out to do all week. I've finally got all of week 1 ready to send in, & all of week 2 except for 1 question. Just 5 more weeks of work to be completed by the 11/04 & I'm set. Then I have a SAC the first week of term, but I'm allowed to take rest breaks, etc. plus my mum is supervising me. So that should quell some of my nerves/panic attacks/anxiety about exams/tests/SACs. I hope.
Sleep: (or lack thereof)
It's 4am & I haven't slept yet. My body is keeping me awake, despite the fact I've taken my meds, because it knows I have tutoring at 1pm, & my body thinks I'll oversleep. It's stupid. I need sleep for tutoring, so my body ensures I don't sleep before tutoring. It's torture & a waste of my valuable meds! I'm going to go insane from lack of sleep. I either get to sleep by 4am & wake every 10mins or get to sleep by 8am & wake every 30mins. Both are exhausting, both cannot be classified as sleep, & no one can help me. I'm on my own here. I've tried everything & nothing helps. Exercise seems to make it worse, stress obviously does & I'm stressed out of my mind.
So busy & so desperate to sleep:
I need to get to sleep!!! My half-brother from Germany & his girlfriend are coming over after tutoring for an early dinner & also so they can tell us about their trip through central Australia. I must study, I must pass, I must get a good mark, & I must return to school next year. The isolation is awful & so is being stuck at home. I just want the energy & ability to escape for a few days. I'm not coping anymore.
Expect another post soon, unless I get too sick to use my laptop again!
Tuesday, March 30, 2010
iMac
YAY!! ...... Oh, crap..... Oooh, cool.
We finally have a functioning computer!! I've never had a mac before, but we've now got an iMac as the family computer; though I've been on it all night! (That's the "YAY!!") I'm so excited to have new music, but panicked that my iPod won't fully sync, it keeps saying: "The iPod "Alex's iPod" cannot be synced. The required file cannot be found." (That's the "Oh, crap.") It's, like, 1am, & I'm so stressed, annoyed & confused. I bought $110 worth of music, & not all of it may have synced. Oh, btw, it's not my pension being spent on Rammstein, Lady GaGa P!nk, blur & more, it's my Christmas & birthday iTunes vouchers. I have about $10 left, I think. I've been making a list of songs I want ever since our pc decided it wouldn't co-operate with iTunes. (It did this by taking 15mins to open iTunes, then crash when I clicked anything at all.) It was a very manipulative PC. lol!! Oh, the iMac has a WEBCAM!! (That's the "Oooh, cool" bit.) It has this thing called Photo Booth, & you can take pics using aforementioned webcam with various effects & backgrounds. It's awesome, but it also means I'll know how to look halfway decent in actual pics. Practice should make decent. (I'd rather perfect, but I'll never look perfect in a pic!!!) Seriously, I'm not photogenic. I may have to take my iPod to the store & see what the problem is. Must ask mum when she can take me. That is, if the iTunes updates don't fix the problem.
Woo-hoo!!
I read in the paper (well, the newspaper's site on my mobile) that 'The Simpsons' vocab has entered ours. But the "woo-hoo!" part is that I'm finally over my virus, my second in three weeks, & should receive info from my distance education teacher soon about how many 'send' exercises & reviews I must complete. I really hope I can stay in Methods this year, & graduate next year, I really don't want to get worse. I slept rather well last night, luckily. I got 4hrs' sleep without waking! Then the iMac was installed yesterday afternoon, & I spent all evening up until now, pretty much, on the iMac, buying music, making playlists & generally having as much fun as I can possibly have, being me. Also, with the thing about posture supposedly improving my pain levels; it's not. It's so much worse!! But I'm gonna keep going, to either improve, or prove my specialist wrong. I love doing that. *evil grin*
Goodnight...
Well, it's about 1.10am now, so I should check on the progress of the iTunes downloads, & go to bed. Rest my aching bones & all that. =p Also, I'm seriously devastated about Skins. A whole new cast for series 5?! But the site says series 4 is available on DVD; I'm hoping they mean worldwide, but it's unlikely. As ever, I live in hope! Goodnight. =)
We finally have a functioning computer!! I've never had a mac before, but we've now got an iMac as the family computer; though I've been on it all night! (That's the "YAY!!") I'm so excited to have new music, but panicked that my iPod won't fully sync, it keeps saying: "The iPod "Alex's iPod" cannot be synced. The required file cannot be found." (That's the "Oh, crap.") It's, like, 1am, & I'm so stressed, annoyed & confused. I bought $110 worth of music, & not all of it may have synced. Oh, btw, it's not my pension being spent on Rammstein, Lady GaGa P!nk, blur & more, it's my Christmas & birthday iTunes vouchers. I have about $10 left, I think. I've been making a list of songs I want ever since our pc decided it wouldn't co-operate with iTunes. (It did this by taking 15mins to open iTunes, then crash when I clicked anything at all.) It was a very manipulative PC. lol!! Oh, the iMac has a WEBCAM!! (That's the "Oooh, cool" bit.) It has this thing called Photo Booth, & you can take pics using aforementioned webcam with various effects & backgrounds. It's awesome, but it also means I'll know how to look halfway decent in actual pics. Practice should make decent. (I'd rather perfect, but I'll never look perfect in a pic!!!) Seriously, I'm not photogenic. I may have to take my iPod to the store & see what the problem is. Must ask mum when she can take me. That is, if the iTunes updates don't fix the problem.
Woo-hoo!!
I read in the paper (well, the newspaper's site on my mobile) that 'The Simpsons' vocab has entered ours. But the "woo-hoo!" part is that I'm finally over my virus, my second in three weeks, & should receive info from my distance education teacher soon about how many 'send' exercises & reviews I must complete. I really hope I can stay in Methods this year, & graduate next year, I really don't want to get worse. I slept rather well last night, luckily. I got 4hrs' sleep without waking! Then the iMac was installed yesterday afternoon, & I spent all evening up until now, pretty much, on the iMac, buying music, making playlists & generally having as much fun as I can possibly have, being me. Also, with the thing about posture supposedly improving my pain levels; it's not. It's so much worse!! But I'm gonna keep going, to either improve, or prove my specialist wrong. I love doing that. *evil grin*
Goodnight...
Well, it's about 1.10am now, so I should check on the progress of the iTunes downloads, & go to bed. Rest my aching bones & all that. =p Also, I'm seriously devastated about Skins. A whole new cast for series 5?! But the site says series 4 is available on DVD; I'm hoping they mean worldwide, but it's unlikely. As ever, I live in hope! Goodnight. =)
Sunday, March 28, 2010
STRESS!!
Distance education...
My mum rang up the Year 12 co-ordinator for distance education during the week, to ask when I'd be getting a schedule, or some SACs, etc. I then found out I was 7 weeks behind, & the start pack (coursebooks, guides, CD-ROM, etc.) had been sent to us in FEBRUARY, but never arrived. Fail. So I got hyper stressed & had a panic attack. It wasn't until my teacher called me the next day (the 24th) & I explained what I'd covered that I found out I wasn't really 7 weeks behind, I was just missing some key areas: graphs, because they hadn't been covered in the textbook yet. So she said to do the 'send' exercises, & if I had any problems, to look at the coursebooks & explanations, then call/email her if I needed further clarification. The thick coursebook is divided in to weeks (as in weeks of a term) & each week you need to do all the exercises & refer to the thinner coursebook for algebra consolidation exercises & send in the 'send' algebra review exercise(s) & the 'send' work at the end of the chapter. The 'send' at the end of the chapter is 2 - 3 pages long, usually, & there are looooong analysis questions, too. I've nearly finished all of weeks 1 & 2, & have made a start on week 3. I also emailed my teacher to find out how many of the 'send' exercises I need to complete & send in. Otherwise it's waaaaaay too much work for a 2 week holiday break. So stressful!! ... This is a pic of all the work that arrived: http://twitpic.com/1ae3ep
Another virus...
I caught another virus last Monday, probably because when mum went to the gym, her personal trainer was really sick, so I caught it, as I have a really low immune system. (EBV + ME/CFS + secondary infection = low immune system) It was awful. I felt like I usually do (chills, running a fever, aches & pains, headache) but 100x worse & I had a really sore throat that just wouldn't go away, plus I had 'the sniffles'. Badly. I'm still feeling a bit under the weather now, but my tutor noticed the difference in my appearance on Sunday, as opposed to on Saturday. (I'd improved; my voice was more normal.) Imagine if she'd seen me on Wednesday! =o
Flu vaccinations...
I can't get the 'flu shot, because it lays me low, or makes me exhausted/sick for at least 1.5 weeks afterwards. That's a luxury I cannot afford in Year 12. Seeing as I'm practically housebound, I don't need the vaccination, plus with a low immune system, it's recommended in a lot of countries that you shouldn't get the swine flu vaccination unless you work/study, etc. in high-risk areas, like schools, or hospitals. So I may have to get it next year, but I'll ensure I get it on the hols. No reason to fall behind in SACs & work if it can be avoided. I really hope there is a "next year", though. I want to go back to school & graduate so badly that I can't quite explain it in words! I just have to improve & must graduate. Then I can stress about uni. (lol!)
The week ahead...
If all goes well, I'm going to the gym (to see a personal trainer, finally) on Wednesday afternoon, having my hair cut Thursday afternoon, & possibly going to Ikea to get a new wardrobe. Possibly. (I also don't know if we have to get my shelf taken down so the wardrobe will fit. My current wardrobe doesn't fit all my stuff, & isn't great.) Then on Saturday, I have maths tutoring again in the afternoon. (I had it Saturday, and today this week, to make up for last week's missed lesson.) I love Ikea's cafeteria. Particularly the free refills for soft drinks. =D It'd be a nice outing.
My mum rang up the Year 12 co-ordinator for distance education during the week, to ask when I'd be getting a schedule, or some SACs, etc. I then found out I was 7 weeks behind, & the start pack (coursebooks, guides, CD-ROM, etc.) had been sent to us in FEBRUARY, but never arrived. Fail. So I got hyper stressed & had a panic attack. It wasn't until my teacher called me the next day (the 24th) & I explained what I'd covered that I found out I wasn't really 7 weeks behind, I was just missing some key areas: graphs, because they hadn't been covered in the textbook yet. So she said to do the 'send' exercises, & if I had any problems, to look at the coursebooks & explanations, then call/email her if I needed further clarification. The thick coursebook is divided in to weeks (as in weeks of a term) & each week you need to do all the exercises & refer to the thinner coursebook for algebra consolidation exercises & send in the 'send' algebra review exercise(s) & the 'send' work at the end of the chapter. The 'send' at the end of the chapter is 2 - 3 pages long, usually, & there are looooong analysis questions, too. I've nearly finished all of weeks 1 & 2, & have made a start on week 3. I also emailed my teacher to find out how many of the 'send' exercises I need to complete & send in. Otherwise it's waaaaaay too much work for a 2 week holiday break. So stressful!! ... This is a pic of all the work that arrived: http://twitpic.com/1ae3ep
Another virus...
I caught another virus last Monday, probably because when mum went to the gym, her personal trainer was really sick, so I caught it, as I have a really low immune system. (EBV + ME/CFS + secondary infection = low immune system) It was awful. I felt like I usually do (chills, running a fever, aches & pains, headache) but 100x worse & I had a really sore throat that just wouldn't go away, plus I had 'the sniffles'. Badly. I'm still feeling a bit under the weather now, but my tutor noticed the difference in my appearance on Sunday, as opposed to on Saturday. (I'd improved; my voice was more normal.) Imagine if she'd seen me on Wednesday! =o
Flu vaccinations...
I can't get the 'flu shot, because it lays me low, or makes me exhausted/sick for at least 1.5 weeks afterwards. That's a luxury I cannot afford in Year 12. Seeing as I'm practically housebound, I don't need the vaccination, plus with a low immune system, it's recommended in a lot of countries that you shouldn't get the swine flu vaccination unless you work/study, etc. in high-risk areas, like schools, or hospitals. So I may have to get it next year, but I'll ensure I get it on the hols. No reason to fall behind in SACs & work if it can be avoided. I really hope there is a "next year", though. I want to go back to school & graduate so badly that I can't quite explain it in words! I just have to improve & must graduate. Then I can stress about uni. (lol!)
The week ahead...
If all goes well, I'm going to the gym (to see a personal trainer, finally) on Wednesday afternoon, having my hair cut Thursday afternoon, & possibly going to Ikea to get a new wardrobe. Possibly. (I also don't know if we have to get my shelf taken down so the wardrobe will fit. My current wardrobe doesn't fit all my stuff, & isn't great.) Then on Saturday, I have maths tutoring again in the afternoon. (I had it Saturday, and today this week, to make up for last week's missed lesson.) I love Ikea's cafeteria. Particularly the free refills for soft drinks. =D It'd be a nice outing.
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