Tuesday, June 29, 2010

A lovely surprise!

I've been nominated for a "One Lovely Blog Award" by Dominique... Her blog is here: http://www.4wallsandaview.com/ Thanks heaps, I really appreciate it!

In order to receive this award (I found this information from Dominique's blog) I have to:
  • Accept the award
  • Pass the award on to 15 other blogs that you've newly discovered (if possible)
  • Remember to contact the other bloggers to let them know they've been chosen for this award.
I'm not sure how many blogs I follow, but these are the ones I am nominating for the award:
  • It's Time To Get Over How Fragile You Are - by Annie. http://www.fragileannie.com/ She blogs practically every day, and I find each post interesting, inspiring, or just something I can really relate to.
  • Lemon Butter - by Natalie. http://www.lemon-butter.blogspot.com/ Natalie blogs a lot more frequently than I do, as well, and it's a change from the normal spoonie blogs I read. It's a way for me to find out what's in fashion, but it gives me hope that I might recover; Natalie has/had severe M.E., too.
  • ME/CFS and XMRV - by Emma-Kate. http://www.cfsandxmrv.blogspot.com/ Emma-Kate explains the latest news, findings and reports about ME/CFS and the retrovirus, XMRV. It's a great way to keep up with what's been happening, and the blog is brilliantly written and impeccably referenced.
  • My Life as I "StandUP2ME" - http://www.standup2me.blogspot.com/ This blog is about the latest happenings with ME/CFS, the WPI and more.
  • 4Walls And A Viewhttp://www.4wallsandaview.com/ by Dominique, the lovely person who nominated me for this award. I've only recently started to have a look at her blog, and I think it is beautifully written, and I can relate to a lot of the M.E. related posts. (As I can with most spoonie blogs!)
  • How Can I Explain It To You? The Life Of A Grad Student With Lupus. - http://www.gradstudentwithlupus.wordpress.com/ I can really relate to a lot of the posts, and I am hoping that it will give me an idea of what uni will be like for someone with a chronic illness. It's a really good feeling for me when I read something and think "I know what that feels like" because it means I'm not alone, and that's what a lot of these blogs do for me. As well as providing inspiration, etc.
They are all genuinely nice and lovely people. As a happy coincidence, all of these bloggers have Twitter, too! So I can see when they've updated their blogs just by checking their tweets, although Emma-Kate hasn't been on Twitter in quite a while.

I try to read these blogs when I can, but I am often kept to reading short blog entries, like those on Annie's blog. I used to spend hours on Emma-Kate's blog, and the blog 'My Life As I "StandUP2ME"' but lately I've been too fatigued and brain dead! I wish there were 15 blogs I could find to recommend, but I'm exhausted already! Now to notify the bloggers!!

If anyone has any spoonie blogs (eg. M.E. or Fibromyalgia blogs, particularly those of teens/young adults) that they'd recommend, please let me know. But I'm always happy to check out any blogs, when I have the ability!


Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!

The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.

This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?

The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!

That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p

Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!

Sunday, June 20, 2010

Stress, and lots of it!

The school holidays start at the end of this week, finally! I haven't had a break since February or something; I spent all of the term 1 holidays studying, catching up on the 7 weeks of work I had missed. I'm seeing a friend and going to a movie on the 3rd of July, and there's the Class of 2009 reunion towards the end of the month, so I need to go shopping on the holidays and find a blazer, because, at 19, I don't think I'll fit in wearing a hoodie! But I'll still wear my jeans, lol. I really need a rest, though. I'm completely exhausted.

I think I should move my specialist appointment to a closer date, because the 19th of July is too far away. We need to work out a compromise on my sleep, and therefore my pain. I find it hard to believe that in the 21st century doctors can only treat nausea with Ondansetron, provided you use it very sparingly. I need my other symptoms treated, and not with Melatonin! It doesn't work, no matter how high or low the dose is!!

Maths tutoring:
My tutor rang about half an hour before tutoring was due to start, to say that she couldn't make it, as something really urgent had suddenly come up. (She works as a dentist now, and has been tutoring me since I was 13. I'm lucky she makes the time each week to tutor me!) I didn't think it would be a problem until after I spent 3.5hrs revising antidifferentiation, and realised that I was having a lot more trouble with this Unit than I had originally thought. I tried to start the work for Week 2, but it's just too hard for me to understand what is written in my coursebook; I need someone to go through the examples, and explain how it works and why I need to do each step.

I realised about an hour ago that I'll be so busy this week that I won't be able to start my homework until Thursday evening (my tutor is coming over at about 6.30pm) and it's due Friday. That means tutoring will finish at around 9pm, and then I need to study for at least 2.5hrs to do my homework. So I won't be finished until about 11.30pm or midnight.

Unfortunately, because I study via distance education, it takes at least 24 hours for my homework to arrive. I was sent an email last month saying that if you don't have all your homework in before the holidays, the work may not be marked. But I don't think my homework arriving on Monday as opposed to the previous Friday will make a lot of difference, particularly if I let my teacher know. I can't do it on Monday, Tuesday or Wednesday, either; I have appointments on Monday (two of them) and a personal training session on Wednesday, so I'll obviously have to rest and try to sleep on Tuesday. I also have an appointment on Friday, so I can't do the rest of my homework then, unless I cut out a lot of sleep, take Ondansetron and a lot of painkillers. Not a pleasant option. And I'm feeling really exhausted and sick every day. Today was the one day I felt able to study!

Stress and anxiety...
Does anyone have any tips on how to cope?

Year 12 is the most stressful and anxiety-inducing experience I've ever encountered, particularly given my M.E.! There are just so many things to worry about, and my specialist is telling me one visit to drop out, and the next to get a part time job soon! I honestly think doctors talk nonsense when they're at a loss for what to say or do.

Also, if anyone else has sleep problems similar to mine, have you found any medications that helped or worked?

I guess that's it for now, I'll probably have more to write later in the week. Thanks so much for the comments, it's great to know that other people are reading this! Any and all positive comments/feedback are most welcome. =D

Tuesday, June 15, 2010

Maths and other things

Another outing!
I got to go to IKEA on Saturday, as I really needed a new wardrobe and bedside table. I didn't go until 4pm, but I still needed Ondansetron; I've been getting shocking nausea, headaches, dizziness and disorientation/confusion from the LDN. (Which I have had to stop taking; I have been off it for two or three days.) I went to the cafe first, and I really love IKEA's cafe. Particularly the free refills on soft drinks! But for the past 4 days I've eaten one bowl of low fat pumpkin soup (nearly threw it up, that was a mistake) and a few spoons of coconut rice if I get starving. I wonder if I've lost weight; I know I lost a kilo last week. Anyway, I was all *sadface* because I couldn't even finish the kids' bowl of chips I'd got. But I managed a glass of Pepsi. =D It's a good thing I don't lose weight as easily as I used to, otherwise I'd be really thin by now!

Mum had already found out what aisle the wardrobe and bedside table were in, so we went to get them, then organised delivery for the next day, preferably after midday. The furniture arrived at 11am, so I got up at 10.15am, (which is when Mum warned me it would be dropped off soon) watched a bit of tv, and was going to go back to bed, but had to help with the grocery shopping, and get some take-away coconut rice. (If you're ever feeling nauseous, this seems to be quite tolerable in small amounts.) Then I went back to bed, to catch up on sleep. I'd only got 2hrs' broken sleep during the night. O.o

We're going to organise for the furniture to be assembled (hopefully) sometime this week, and then I'll post pics on Tumblr or Twitter of the new furniture. One of the wardrobe doors has a mirror on it, which is brilliant, 'cause I've only ever had one of those little mirrors designed to sit on a shelf so you can see your face. Not useful for looking at a whole outfit!

I started Unit 4 on Sunday, having finished my calculus assignment last week, and my 70-minute SAC in the same week, as well. I'm really not sure about how I'll go, and I know for sure I got one of the short-answer questions really wrong. I guessed. Sometimes guessing pays off, sometimes it doesn't; but you had to attempt every question to show a satisfactory understanding of the topics in that SAC. Ew. Week 1 is antidifferentiation, which is pretty hard. There are also way too many rules, plus it's complicated to set out and remember what I am supposed to be writing!

I had maths tutoring on Monday, and we covered all of Week 1, then after about 2.5hrs of tutoring, I studied for another 3.5hrs, and I managed to complete the week's homework and a 20-minute practice exam. I plan to revise antidifferentiation as soon as I can sleep enough and the house is quiet. I hope I get a decent score for maths this year, I know that it wasn't this difficult in Year 11!!

I might ask some of my friends who graduated last year to study with me/share their notes before my exams. That is one slight advantage to being left behind; you can get help from others who have very recently suffered through the same subjects as you!

I hope my tutor isn't disappointed in me when I get my marks back. She's really nice, I just feel like I could do so much better if I could sleep each night, or 3 nights per week. I feel like I'm letting everyone down; I used to be able to survive on 3hrs' sleep every night when I was 13, now I can't survive on 4 or 5hrs' broken sleep. I think if I were to get 5hrs' sleep without waking, between 11pm and 4am, I would be okay. But some nights I am awake until 4am, or even 8am. And I don't sleep deeply after a whole night awake anymore.

I slept much better on Saturday night, only waking two or three times, and I got to sleep at around 1am, woke at 2am and 6.30am, and got up at 10.15am. Obviously I didn't get 8hrs' sleep, as I was awake from 6.30 onwards, dozing occasionally.
Sunday night I slept about the same, except I woke at 2.30am, and couldn't sleep between 7.30am and 11am as my younger brother had a friend over for a sleepover the night before, and they were quite loud. But, thankfully, they were silent when they got up at 4am or something to watch the World Cup. I had maths tutoring at midday, so I had to get up at 11am, and I took Ondansetron at 10.40am, so I would be able to get ready and eat a little without throwing up.
I slept okay last night, as well; I got to sleep at around 1.30am, woke once or twice (I don't remember when, so I musn't have been awake long) and have been awake since 6.50am. (It's nearly 10.20am.)

I've dimmed my bedside alarm clock so that it doesn't display the time; all my doctors have made me "clock watch" so I can say when I wake/sleep, etc. but that obviously increases anxiety and makes you less likely to sleep. I'm getting used to it, slowly, but I hope it helps my sleep in the long run. I honestly think, looking back at my sleep pattern, that any amount of anxiety or stress directly affects my sleep. Which is why my sleep has been getting steadily worse, along with my health, since I started Year 11, and I get worse each time a doctor lies to me, lets me down, or makes false promises and gives false hope. Ie. "I can cure you, you feel like this all because of your Idiopathic Hypersomnolence." I need to learn to let go of these things, but I've never been good at moving on, or no longer dwelling on the past, so it will be really hard. But it's affecting my health, so I must try.

I'm wondering if I should keep going with my blog; I do know that some people read it, I'm just not sure if it's worth it. I feel I should post at least each week, but is there a point if no one really cares? Would I be better off just using my energy to write in my diary most days. If anyone has any opinions, tips or comments, I'm always happy to hear them!

Tuesday, June 8, 2010

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.)

Tuesday, June 1, 2010

An outing!

The outing:
I went to Officeworks! I think we only needed a few things originally, but I ended up getting some new pens (red, blue, black and purple) and two mechanical pencils. I already had pens and pencils, but I needed ones with a very soft grip, particularly for tests and exams. I get wrist cramps and a lot of pain when I write; it's such a pity you can't use a computer for Maths exams. That's just stupid! I also bought a cute notebook that I plan to use as a diary. Maybe if I write out what I'm thinking, I'll be less angry. I hope. I'll just have to wait and see. (Here's the notebook, that's just the cover) 

Before Officeworks, the actual reason I left the house was for a family therapy appointment. Just to work through things while we're adjusting to the new situation, and to deal with long term things, like my illness, and the way my brother and I constantly fight. The session went okay, but it was really tiring. Plus it was only an hour long session, so to try and fit everyone's point of view in meant that the therapist had to keep cutting everyone off to start on a new topic. We've seen this therapist before, and she's good at what she doesn, but with my memory as bad as it is, I can't afford to be interrupted. Otherwise I'll forget everything and zone out.

I've done a fair bit of my calculus assignment, but it's so hard! None of the questions I've encountered have been anywhere near this difficult!! And I have to do a title page, abstract, references and acknowledgments. Basically, heaps of stuff I haven't done before. I don't know that I'll do very well. =| I don't understand why the weekly work was so much easier than this assignment, and I really wish I was able to do more of it. It counts for 40/60 marks from assignments and SACs. So this isn't good. I'm starting to regret choosing this maths, but if I'd chosen the easier one, all my work from Year 10 and 11 would have been pointless. Plus I need it for accounting. I might try to do some study soon; I'll see how I feel.

How to cope?
I really don't know how to cope; no sleeping meds have ever really worked for me, and all I'm being told is "You can feel like you're dying from lack of sleep, but you can never actually die from it." It's not helpful, and it's not reassuring. What I was wondering is this: does anyone have any coping strategies they use when things get really hard? I try listening to music, going on Twitter, Facebook and Tumblr, or blogging, but a lot of the time, I just want to sleep! How am I meant to cope with this uncertainty?

Thanks for reading, and I hope everyone is as well as they can be. =)

Doctor's appointments & a long-kept secret

Doctor's appointments:
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.

Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.

As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.

One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.

A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.

If people don't like me as I am, tough.

The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.

Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.

Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!