Update!

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

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

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:

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.

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

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