Holidays!

Holidays!I finished orientation yesterday, and today is the first day of my summer holidays. Or, as it's now called "study break"... I have a tonne of holiday homework, so I'll probably end up studying a lot. Before I started orientation, though, I went stationery shopping! Here are the things I bought.



The only textbooks that were in stock: 'Stasiland',

'Aria', 'Emma' & notes for 'The Tempest'. All for Literature. =)



I got some star shaped paperclips &
a box of metallic coloured clips, too





Purple binder folder, notebook, plastic envelope and display book for Legal Studies





Matching binder folder & notebook with pink
plastic envelope and display book for Literature

 






















I got a new pacer, fluorescent sticky tabs, write on sticky tabs,
a mini stapler as well as a mini pair of scissors.

Stationery and textbooks:
I colour code all my stationery. Green is for German, blue has always been for maths, and this year I chose pink for Literature and purple for Legal Studies. The rest of my textbooks should be in soon, I ordered them a fortnight ago, and I can't study properly until I have them all. In fact, I can't do anything for Legal Studies until I have the textbook.

I've started to read 'Emma', though. I really dislike Jane Austen, and I've tried to read 'Emma' three times in the past few years, but have never persevered. I did read all of 'Pride and Prejudice'. It took all of my willpower to finish it, and I've given myself motivation to finish 'Emma' this time: I'm not allowed to read any other books until I've read it! I'm dying to read 'Stasiland', because my detailed study on the DDR and post-war Germany from 2009 will really help, plus the book looks great... But I won't. Not until I finish 'Emma'. And it's killing me to have to delay starting Shakespeare, but it's what I need to do.

Orientation:
I've got nice teachers for my subjects, and they understand my illnesses. Hopefully there won't be too much homework, but if there is, they should let me do less. I work best when only the necessary tasks are compulsory, so there's less pressure on me. But that's not until next year! I'm part time at school, still, and my Literature class is really small; there's only 8 of us. Legal Studies is a bigger class, and I think I'm the only one who didn't do it in Year 11. It's not worrying me too much, though, as it's not very difficult. There's just quite a lot to memorise.

I feel a lot happier and more motivated now that I'm back at school. Every time I say to a doctor how ill I am, or how much pain I get after a full day of school, they suggest I drop out. I'll never drop out, ever. This is my reason to get up each day, and to keep pushing through the pain and exhaustion, and every doctor suggests I give it up. Well, I won't. I've lost too much already, and it's ridiculous to "listen to your body" when you're in my condition. If I did, I'd never get out of bed, and then my doctors would be even more annoyed! It's great to be at school again, though. My year level is really nice, and they've been so welcoming. I was even included in the KK, and the school captain ensured I got my circular about the Year 12 hoodie in time! Next year will be a really good year, even if I'm in pain and constantly exausted. It's my last year, and I'm determined to make the most of it.

Christmas...
We put up our Christmas tree on December 1st, as we do every year. I took a picture on my iPhone:

Our Christmas tree with all the decorations on!
We've got to get some more lights. One pack isn't enough.

I've never got what I truly want for Christmas: I want to be healthy. I want there to suddenly be a cure for all my spoonie friends, so no one ever has to suffer. I'll take the next best thing, though: an improvement in my health. I'd love that, especially if it helps me complete high school! I usually just get things to make my life a bit easier - an iTunes voucher so I can buy more music for days when I'm in bed, or DVDs to watch, or, when I was healthier, art supplies and sewing supplies. Things like that.

Small things make me really happy, though. Sometimes it's just being remembered, which sounds odd, but if you're part time at school, people often forget about you, so it's things like being included in a KK, girls inviting me to walk with them at lunch, or my extended family understanding my illnesses and actually asking how I am, visiting me in hospital, or calling me. (But that doesn't happen. People get tired of the chronically ill, but they never think that I'm sick of being sick!)

One thing I've taken from my experiences with people and my illnesses is that family won't always be there, so you need to build a support network of close friends, ones who'll always be there, no matter what. I'm working on that, but it's so hard to keep friends if you can't do what "normal" teenagers do!

Thanks for reading, and I hope I'll be able to post a bit more regularly over the holidays. My laptop has been completely reimaged and restored, so now it runs brilliantly... I've also got Windows 7 now! Leave a comment if you feel like it! =)

An update.

My diary:
So I've been writing in my diary daily, and I am actually finding it helpful. (... And painful; I've never been able to write more than half a page without my whole left hand cramping and aching!) I have named my diary, too. I find myself a little more content, or at least, less ill at ease after I have written several pages. I feel I have so much to confide in Jadzia, (this is what I have named my diary) so much that my hand cannot keep pace with my mind, which, as always, is running at a million miles a second! I would dearly love for the pain to go away, so I can write and write until I have lifted some of this weight that is dragging me ever deeper with each passing day.

I find it reassuring to know that I can always turn to my diary, even when I am housebound, with few friends who keep in touch. I wish I had more energy, or some at least, so I wouldn't always be lacking in energy, and using the next day's ad infinitum. With a little more energy, I would be able to dress, shower, wash my hair and even study, as well as write in my diary without lying in bed in between each minor task. I can only hope that I am able to sleep well soon, so that I may return to school in November and give these last two subjects my best try. I miss school; the routine, the social contact, the familarity and even some of the teachers!

If I am granted one wish this year, let it be that my sleep returns to a 11.30pm-6.45am pattern so that I can do my best each day. I fear that I bore readers (if there are any) with my repetitive posts. Hence, my diary. Jadzia shall never stop "listening" and I will always have an outlet for my emotions, one which is cheaper than a psychologist and has no office hours!

Despair, or Year 12, as it is otherwise known!
I am currently despairing, as I feel I shall receive a terrible mark for my last calculus assignment, which I must send off with a medical certificate this week. (My teacher did say it would be the hardest assignment or test I would encounter this year, and it is no wonder I had so much trouble with it, but I was so hoping to maintain my A average.) I should work on my next SAC today, which is only 70mins long, including reading time. I do hope I receive a decent mark for this SAC, as I cannot afford a low average for my schoolwork. I tend to perform badly on exams, as people with M.E. generally do; once time constraints are applied, marks go down, and forgetfulness increases. It has been proven, but, naturally, the governing body for Year 11 & 12 assessments does not recognise recent research. This illness frustrates me more than words can describe! I believe this SAC covers weeks 9-12, or the tangent function, co-ordinate geometry, and an awful lot of differentiation. I studied for a long time with my tutor, and even after she had left, so I hope the knowledge stays with me. Wish me luck, it's due in this Friday!

"The Diary Of Anne Frank"
I am re-reading Anne Frank's Diary, not because I've started to keep a diary of my own, but because I've always loved the book, and I used to want to be like Anne Frank when I was younger. (I was 7 or 8 when I first read it.) I wanted to have that many friends, be popular and fun, do well in school and have (what I considered to be) beautiful penmanship. Above all I wanted the ability she had to look at herself without pity, and analyse herself, her interactions with others and every aspect of herself. I wanted to have that kind of faith in God, and a sense of optimism.

There is a passage that spoke to me, and I honestly wonder if it could help someone who feels the way I do... "The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simply beauty of nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles." (Wednesday, 23rd February, 1944, "The Diary Of Anne Frank")

I am without any kind of faith; I seem to be unable to sustain or even start a belief in a God of any sort, and this is the only real issue I have with the passage. A few entries before Anne wrote this, her mother advised one of their helpers, who was feeling terribly miserable, to think of all the others who are miserable in the world, and said that would help to cheer her up. That is quite similar to people telling me: "There's always someone worse off than you, be grateful for what you have." I think I would rather go out to the countryside for a few days, or a week, and spend some time relaxing, writing and unwinding. It is very difficult to be at one with nature in a city! Anne seems wise beyond her years, and I would be grateful to have some of her spirit; her unwavering faith in God, her sagely advice, and her patience.
In reading her diary I have seen how much she has changed over the course of a year, from the first entries, about her life with friends, boy friends, outings and more, to her increasingly introspective life in hiding, learning to keep the peace, bite her tongue, and try to understand and get along with all occupants of 'The Secret Annexe.'

I hope that by keeping a diary, and by talking through my problems that I will be able to become a better person. Not like Anne Frank, by any means, but simply more understanding and tolerant of my family.

Thank you for reading, and if you'd like, please leave a comment! (I always love to read them, and I always try to respond.)

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