Tuesday, January 12, 2010


So, it's summer. Which is generally okay with me, except for the fact that I've been on holidays (sort of) since, like, September. (Year 12's finish early so they can study for exams. Nice if you CAN study!!) And when I'm stressed, I eat. And when I can't exercise, and am on a new neuropathic pain medication that makes you gain weight, it's not very convenient.

I was actually told by the doctor at the pain clinic that "Weight gain won't be a problem, because you'll be pain free and able to exercise." Well, it didn't help my pain. I tried it from late October til December, with no effect, except I gained some weight. Then, after being told I'd get an appointment in the first week of December, I got one in the first week of January. (Probably because ME/CFS pain isn't as important or "real" as other pain. That's my theory.) They put me back on the pain medication, at a higher dose, all at night, because, for the first time in my life, someone believed me (after my parents backing me up) when I said that sleep is the only thing that relieves and prevents pain. I slept well the first night; 5am - 2pm, and woke up feeling unrefreshed (like every other morning since I was 12 or 13) but awake, and alert, and less dead inside. Not happy, because nothing is ever guaranteed. I'm not dumb enough to organise to meet a friend the next day, because, I know I may not sleep like this again for years. And, wow, I really didn't sleep the next night, or the night after, or any night. I'm back to getting to sleep between 5.45am and 7am, usually around 6.30am. It's not pleasant, it's depressing, and I can't cope with it anymore.

Anyone who's had insomnia will know that broken sleep (ie. waking every 10 - 30mins, or every hour) isn't restful. You wake up feeling worse than you did when you finally got to sleep. Doctors try to tell me that broken sleep is just as good for you and as restful as sleep 8hrs straight. It's not. It's torture, as is being awake when everyone else is asleep, then being asleep or bedbound due to a combination of nausea, dizziness, weakness and disorientation while everyone else is awake.

I really need to get my sleep sorted for next year; I'll be doing two subjects, and actually going to school. This year, it looks like I'll be doing distance education and getting my maths tutor to come to my house once or twice a week. I'll be isolated, but able to work when I can, and sleep when I can. Although I have to go in to the centre (about 10mins away) for SACs, exams, and possibly tests. It's maths, so it can't possibly be as computer based as English. Right? I need to get a scaled score of around 38, and then hope I can manage a scaled 40+ in Lit and about 38 in Legal Studies... That means I get an ENTER around 86.75... I'd be very happy with that. I could apply to the uni I want under "family hardship" and "disabilities" which means they would:

a) Take into account statements from teachers & principal regarding my marks before I became this ill, and realise the ENTER I could've got if I were healthy
b) Read statements from my specialists about the extent my illness affects me
c) Then hopefully give me a place, and a CSP, and if very lucky, a form of scholarship, which is thousands per year (you get an allowance, last I heard)

If they don't offer me a place, then I guess I wouldn't be doing Arts, then Law, I'd just be doing Accounting. I could see myself being content with that. It wouldn't take as long, then I could get a lot further in my profession... I mean, as long as I make enough money to sustain a comfortable lifestyle, and am reasonably satisfied with my job, I would be happy. I'd be a hell of a lot happier if I were healthy, but that won't happen too soon.

I don't understand how pacing would work for me... How long am I meant to stay in bed before I have a reserve of energy? I have none; I'm working on negative amounts of energy just to get up and sit on the couch, and heat up food. Never mind washing my hair or making my bed. I haven't had any energy reserves since I was 13. My doctor sometimes says that exercise is great for my ME/CFS, other times she says "If all you can manage in a day is to have a shower and get dressed, or walk to the mailbox, that's your exercise." So, basically, she's totally undecided. It's very useful. NOT!! (Oh, God, it's been ages since I've watched 'Borat'... So funny.)

I plan to buy 'Bruno' (haven't seen it yet) when I manage to go to the movies to see 'Avatar', and spend my $50 Borders voucher. Ooh, and I want to go to Smiggle, too. And I need to return a drink bottle that leaks to a surf shop. Damn, that's, like, 3 trips to the shopping centre. I'm not big on shopping, but it gets me out of the house. But I refuse to go in a wheelchair. People stare, talk, point and make faces. Plus it's as tiring as walking, when you put up with that shit, and the pain is equally exhausting whether I walk or sit. Lying down is the least painful thing. =\

So, about 2.40am... Not sleepy, Facebook won't work, and I am SICK OF THIS HEAT!!! It was over 43*c today. And I had to go to the doctors' in the afternoon. They rang to remind me on Friday, but, being idiots, they left a message on the home phone. The messagebank doesn't work. I've told them this the other 3 times it's happened, and each time they said they deleted the number. After my mum rang to check when my next appointment was (in the morning, so I was obviously asleep) they said they'd deleted the number, and they'll only call my mobile in future. I guess I'll have to wait and see whether they actually call my mobile instead...

I wouldn't mind it snowing here, but it never has. Only if you go to the mountains. And mum's arthritis means we can't, and my doctor said I couldn't go on my school's ski camp when I was 14... All equipment provided, and everything, but I missed out. So, if it doesn't snow here, I won't be seeing snow for a long time. Just cold weather in winter (10*c - 17*c during the day) and awful weather in summer (heatwaves with days of 43*c - 45*c) O.o

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