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!!)

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.

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!!!
I got some rather abusive/offensive questions on 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. =)

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


  1. Excellent news about finishing all your school work!!!!

    I hope you get an earlier apt with the new dr, are they a cfs/me dr? can you give us deets?

    fingers and toes crossed for you!!!!

  2. Thanks!! I spent 2.5hrs doing maths tutoring today, and another 3.5hrs studying/doing my Maths homework. So I finished it all, and it isn't due until Friday! It caused heaps of pain, but I don't have to stress this week!

    Yep, it's an ME/CFS specialist. Leave me your email address, and as soon as I'm well enough, I'll get the deets, phone the doctor and pass it on to you.

    I really hope I can get an appointment in July/August; that way it'll start working in time for my exams. (If it works and if I can get an appointment!)