Friday, January 29, 2010

Off neuropathic pain meds, and it's back to school!! (But not for me.)

Hi everyone!! (Or the few people who read, or stumble upon this blog!)

I'm feeling better; I'm off my neuropathic pain medication, and I've lost 2 kilos, (although I really haven't been eating much for the past 3 weeks) my neck pain is gone, and my back pain is just the usual lower back pain that hits whenever I don't sleep enough, or do too much, and makes me really irritable and have to lie down with a heat pack, wishing I could have morphine again. Oh, and I'm thinking clearer, less mood swings, irritability... (I'm usually in a hideous mood, particularly at my younger, highly fit, active, loud, happy younger brother.) Oh, that sounded bitchy.

Wait a sec, let me try to explain:

I don't know if you can understand this, but, when I see healthy people, people who can run around, or go to school every day, have sleepovers with friends, study whenever they want, and SLEEP, I get really upset and angry. Envious, too, obviously, because they have what I can't: health, happiness, fun, quality of life, constantly achieving their best academically. It's like when my mum is watching a movie, and sees someone running, or is at a footy match, and thinks "I can't ever do that again. I can't even do light weights at the gym. I've injured my shoulder permanently, and I have degenerative arthritis."

You can't appreciate something so simple like getting out of bed, showering, sleeping, or exercising until you lose the ability to do so.

There's a drug I was given as an inpatient in January last year, for my severe nausea. (They didn't want me to require IV hydration, 'cause I couldn't move my vision was so blurred, I was disoriented, and couldn't turn my head, eat at all or drink enough because of nausea.) It was called Ondansetron. I got given 10 when I was discharged, but here, you have to be on chemotherapy to get it; it's a restricted drug. But I took one on Australia Day. I spent 6 hours at a bbq, indoors, sitting at a table, managing to eat and drink, tolerate light, noise and people, and enjoy myself. All on 5 hours of broken sleep.
It improves my tolerance for stimuli, my feelings of disorientation, blurred vision, nausea and headaches that painkillers just won't kill. But I can't get it again. It's supposed to help with ME/CFS symptoms, and, from my understanding, overseas, it's only the cost that is prohibitive, not the government's annoying restrictions. So now I have 9 tablets to last the rest of my life.

I'm fucked.

Unless I can research with my specialist to find a type that isn't restricted, or get a private script. It means the difference between missing a day of school, or a test, or SAC, and getting an A or B on that SAC or test. It meant that with my meds for Idiopathic Hypersomnolence combined with Ondansetron, I could be awake, alert, and able to socialise, eat, drink, and study.

Sometimes I wish Australia were more lax with their medication restrictions. For instance: Modafinil is on PBS if you have Narcolepsy, but not if you have Idiopathic Hypersomnolence. The difference between these illnesses? Narcolepsy, you can't control when you sleep, get excessive daytime sleepiness, with REM sleep. Idiopathic Hypersomnolence, you can't control when you sleep, get excessive daytime sleepiness, without REM sleep. Sure, HUGE difference. NOT.

Well, I've got to fill in the enrolment forms for distance education with my mum at some stage, and will go to Officeworks and Smiggle to stock up on pens, pencils, scented pens (to tempt me into study) looseleaf, folders, and more! Then I'll get my textbooks, organise a tutoring session, probably for mid-February, and hope that my sleep and panic attacks sort themselves out before distance education starts. I love stationary shopping. It's almost like that if all my subjects are colour co-ordinated, then I'll be organised and get good marks. But, really, it's like semi-procrastination and a fun shopping trip!! Smiggle is awesome, though. Seriously. I can't wait for stationary shopping.

I'm in a lot more pain at the moment, but my usual pain. So today, my constant companions were a heat pack, and a quilt. I watched some Cold Case, Law & Order: SVU, the rest of the 30 Rock marathon I'd taped and Family Guy. Plus an episode of the German News, 'cause I felt I'd been sick and not studying. Pity there aren't algebra programmes on tv or something! Then I could "study" Methods while lying on the couch, feeling awful. I hope I'm not too far behind, and that I can cope this year.

Hope you're well, readers. =) Comment if you feel so inclined.

What was the happiest moment in your life?

Since I was 8 when my life started to very gradually disintegrate...

I'd say The Killers' concert in November of 2007. It's the only concert (apart from classical) I've attended, ever. I was able to stand the whole time, clap, cheer and sing. I went with a great friend, and got out of the house, for a reason besides study.

I came home experiencing an emotion I'd forgotten - happiness. I described how I was feeling: exhausted, but on some kind of high, and I couldn't feel the pain, but I knew I'd miss school the next day. And I didn't care. I was excited, and couldn't stop smiling. My mum said: "That's happiness, Alex." She looked so happy, too, but a little sad. Maybe you're supposed to remember what happiness is like.

Ask me something!

What 3 things do you think will become obsolete in the next ten years?

I'm guessing.

iPods: I think the iPhone will become more advanced, people will want all-in-one, compact devices, and smart phones with awesome music capabilities could supersede simple iPods/MP3 players.

MP3: I read there's a new music format, it's called MusicDNA or something, and when you buy a song, it'll update every time you connect to the net with upcoming albums, gigs, and gossip about the band you're listening to. I mean, that would be .awesome. Right?

I don't know about the third.

With the Kindle... Books: no matter what people say, I don't think books will ever become obsolete. There's something concrete, reassuring, and wonderful about opening a book - for the first time, with the "new book smell", or rereading a classic, a well loved edition that's worn at the edges. A book is something tangible. Books shouldn't be downloaded like one would an app or a song.

Integration of appliances: with so many things becoming integrated; televisions with internet access, HD set top boxes built into wide-screen televisions, (fridges with televisions!!) I think that some aspects may become obsolete... Maybe the computer will replace the tv, or vice versa, or things will just link up so much that there isn't a clear line anymore.

I think that's the future: the blurring of lines. Lines between types of technology, between work and home lives, all sorts of things.

Ask me something!

Friday, January 22, 2010

'Girlfriend' magazine article and raising awareness!


From those of you in Australia and NZ (I think) you'd be able to buy Girlfriend. I read it usually when I'm in hospital, or am too sick to process a book. Anyway, I got an article published! They sent my mum a list of questions, and she wrote down my answers, then put them on the pc and emailed them. (I was too sick to use a computer at that stage last year.) True to their word, they've published my interview/story in this month's edition of the magazine.
The title is:
"I'm bullied because I'm sick:
Alex, 13, wants people to understand her illness and not attack her for it."

Yeah, they fudged my age - maybe 'cause it looks bad if I've been sick since age 8, and am 18. It says I'm 13, and the cut out everything related to Year 12, 'cause not many 13 year olds are in Year 12! Still, it's much better than the newspaper article; twisting my words, misinterpreting, and generally seeking a sob story. (No, I do NOT like tabloid journalism, but it's only because of that article that I got extra writing time for my German exams last year.) If you're interested, buy a copy... They don't have it online. It really shows how severe ME/CFS can be, although not like my Twitter friend, @Stroopwaffle. She's got amazing strength.

My mum is thinking of writing a book about me, how it's affected me, and my family, and how misunderstood and maligned ME/CFS sufferers are. I think it's great, and there is a market out there. People who are incredibly disabled do not want to hear how an AFL footballer tried ice baths to "cure" him. Because then every man and his dog will tell every ME/CFS sufferer and ice bath will "cure" them. Never mind that it didn't work for the footballer!!

My sleep is screwed again. I waited for my brother to go to sleep 'til quarter to one in the morning, then tried to sleep until 2am. It's nearly 4am and I finished watching 'The Two Towers', started 'The Return Of The King' and have tweeted, gone on Facebook, read a blog, and am writing this before I attempt sleep sometime after 4am.

Our neighbours are having renovations. They start at 7.45am with LOUD, NOISY hammering and sawing, and then stop for the day at 1pm or 2pm. So, I can either eradicate any chance of sleep at night, and sleep from 2pm - 8pm, or, suffer with a headache, nausea, dizziness and exhaustion from being woken too early, sleep deprived, and exhausted. I don't know how much longer I can cope. I am just happy they don't DISTURB THE WHOLE NEIGHBOURHOOD on weekends. My parents may go over and see them, to ask if they could start at 8:30am/9am, or ask how much longer they'll torture me. Although it probs won't be phrased like that.

I'm pleased with myself. I've got myself published online, (the newspaper article was published & circulated online) in a national paper, and in a national/international magazine. I just want people to accept ME/CFS and I have to raise awareness. Somehow.

Goodnight, and I hope for the sake of my sanity, I sleep and am not woken by obnoxiously loud building works!

Wednesday, January 20, 2010

Blurred vision. It's not fun.

I've only recently got blurred vision as a symptom. Once in January, during my hospital stay, I couldn't see people's faces, watch tv, read, or do anything, really except talk to the kids in my ward, who were blurs. The doctors weren't concerned until I mentioned it for the 100th time, then they looked at my eyes. Couldn't see anything wrong. Turns out, it's a symptom of ME/CFS. Funny, no doctors knew about it.
Anyway, it's back again. It's a side effect of the pain medication along with fatigue, sleepiness, (not getting that, unfortunately) confusion, blurred or double vision, changes in weight, nausea, back pain, muscle pain, dizziness, unsteadiness, disorientation, forgetfulness, headache, sore throat, fever/chills and a runny nose. I've had all of those except the sleepiness, so I'll probably go off it. The first time I was on it, it was just weight gain and the blurred vision for one day, and then another half day. Now, it's two days running of blurred vision, with brief moments of reprieve, and I don't think a medication that causes or can worsen symptoms I've already got is a brilliant idea. But, hey, at least I didn't get jaundice or hallucinations, right?

It sucks, because I can't use my laptop, I can't read, all I can do is watch tv, and even that's blurry. If I miss dialogue, I have to rewind it, because I can't read the damn subtitles. And I tried my reading glasses. (Yes, I needed them from age 9 - 12.) They didn't help, and they always gave me headaches, the whole three years.

I'm really stressed about how I'll cope with Methods CAS this year. And what if the blurred vision happens on a day when I have tutoring, or a test, or worst of all, an exam? I won't be able to see the exam!! At least I can tell my tutor I'm sick, and apologise like hell, but that doesn't work with Year 12. I'm so exhausted, and my doctor thought I'd be doing 3 subjects this year, and full time uni next year, plus a part time job, when I saw her in November last year. No one knows what to do, and very few people will admit it. I'm just so sick of never knowing what will happen in the next hour, day, month or year. It's the unpredictability that's awful.

Anyway, I don't want to push my eyesight, not while it's still here, so that's all for the moment, I guess. Anyone else get blurred vision with ME/CFS, or know how to help it? 'Cause "time" isn't the most convenient or practical answer. Also, if there are any typos, it's the eyesight. Not used to the laptop.

Saturday, January 16, 2010

'Avatar' and shopping!

Yesterday I finally got out of the house and went to see 'Avatar' at the director's suite. It was pretty good, but they could've cut out 1/3 of the film; essentially the action/fighting/marines, and still had a great movie. I got really sleepy in the middle, but I actually managed to stay awake. And I got up at 1pm, although I wasn't able to think straight or walk properly until 1.50pm. I was that exhausted and sleepy.

After the film I went to Myer and bought two pairs of tracksuit pants and two t-shirts. Bonds makes really comfortable clothing, but it's a little overpriced at Myer, in my opinion. (Although I am fairly tight with money when it comes to buying myself stuff. With gifts for others; I splurge, or go all out on making something lovely. Like a quilt I hand-sewed for my grandmother.) Luckily, I wasn't paying. Mum was! Unfortunately, there was only one pair of the Bonds tracksuit pants in my size... Loads of 12's and 14's in dark grey, grey and black, but only one 10. It was in black, which is cool, 'cause black matches basically everything. The other pair were Urbane, and they were still really comfortable, and both looked good. I got a pink t-shirt and an aqua one.

I then cleared out my wardrobe when I got home. Loads of my t-shirts are old, with the hems coming undone or the patterns are totally faded. I'm still keeping two of my favourite t-shirts (one is a yellow Paul Frank, and the other is a blue Billabong one) until I can go to the Bonds outlet and get some more, hopefully in the afternoon. The old t-shirts are just for wearing around the house. I also decided to get rid of my old school dresses; I was keeping them for the Class of '09 to sign on the last day, but as I was too sick to go for that, there was no point. Just taking up space.

The weirdest thing is that I've lost weight since I was last weighed. (Late October.) But my jeans still don't fit properly. It's seriously pissing me off. I know my new neuropathic pain med causes bloating and weight gain and irritability and mood swings and a million other things I haven't experienced yet, plus ME/CFS can cause bloating, so I'd say that's why my jeans only just fit. Yeah... On the plus side, I'm still a size 10 or XS. WOOT!!!

I really hate the way I have basically every symptom:
  • insomnia, inability to fall asleep and stay asleep, restless legs,  
  • pain (especially in the muscles and/or joints, often migratory)
  • blurred vision
  • fevers, chills, aches & pains
  • confusion, 'mental fog'
  • memory loss
  • difficulties concentrating 
  • hypersensitivity to stimuli
  • dizziness, blacking out
  • weakness
  • sore throats
  • severe headaches and/or migraines
  • thermostatic intolerance (I can't maintain a constant body temperature) 
  • cold extremities (even in summer)
  • flushes, sweating, shivering, intolerance of extreme temperatures
  • worsening of symptoms with stress and exertion
  • anxiety/panic attacks
  • weight fluctuation
  • flu-like feelings and general malaise
  • exhaustion
  • unrefreshing sleep
  • new sensitivities or allergies to food, chemicals or medications
  • tender lymph glands
  • difficulty recalling information, making decisions, inability to multi-task
  • disorientation, blurred vision and/or problems focusing vision
  • ringing in the ears
  • 'zoning out' (Being so tired that one's body and mind shut down. One has no control over this.)
  • post-exertional malaise (Most people feel better after exercise. ME/CFS patients do not. It can take days, weeks, months or even years to recover from exertion, and the onset of malaise is delayed.)
There are many more specific ones that I could outline, but I think this list will give you an idea of what many ME/CFS patients suffer through every day of their lives, with no respite. The discovery of the retrovirus XMRV has given us hope, however, it will be a long time before there is anything close to a cure, and even longer before Australia recognises the existence of this retrovirus, it's proven link to ME/CFS, and the potential to treat XMRV positive ME/CFS patients with anti-retrovirals until a better, targeted treatment is found. And, hopefully, a cure.

I didn't mean to turn this into another post about ME/CFS, but I looked at my blog's title, and thought: "Well, the readers can't say they weren't warned!!

Moving on, are there any good books or CD's you'd recommend? I got a $50 Borders voucher at Christmas, and I plan to spend it sometime soon. I'm planning on buying 'Bruno', some stationary (they have such cute stationary there) and use whatever is left over on books and/or CD's. I'm lucky that I have pretty much the same taste as my mum when it comes to books, so whatever she buys, I read after. I haven't been well enough to buy myself a book in over 2 years! And, while I'm talking about stationary, Smiggle is awesome. They have scented pens, pencils, erasers, pencil cases in all shapes, styles and colours, plus folders, exercise books, staplers, scissors, highlighters and heaps more. I have a 'craver saver' card; every time you spend $10 (I think) or more you get a stamp. And once you get to the 14th square, you get a free gift. It'd better be good!

When I do my stationary shopping in January, before school starts, I colour code each subject, buy pens, pencils, etc. in nice co-ordinated colours, and hope that this organisation will somehow translate into brilliant grades. For instance, German was green: green folder, exercise book, Post-it notes. Methods is blue: blue folder for school, blue folder for tutoring, blue exercise book for school/tutoring, small blue exercise book for notes and working out. It's not OCD, all my friends do it, too. It's something about Year 11 & 12. You feel like your whole life will be reduced to a number, (your ENTER) so you take control and organise whatever you can. Plus the stationary section in Officeworks, and all of Smiggle is generally relaxing.

Well, that's it from me for now, it's about 3am. Comment if you want, I love to hear positive feedback. Take care of yourselves. =)

Wednesday, January 13, 2010

Cool change, finally.

The cool change came through sometime in the afternoon on Tuesday (I was asleep, but my room was still boiling) and I believe it actually rained/drizzled. So it went from being 40*c to the low 20s by afternoon. My room is cool now, and I'm looking forward to a week of temperatures in the mid to high 20s.

Summer is only okay when it's school, and I never have to think about what to wear. But not if it's 35*c or higher; then I just can't study or concentrate. If I do distance education this year, I'll miss the uniform (not the hat in summer, or the tie in winter) and not having to think about what to wear. The only choice I make in the morning before school is how to do my hair. And there isn't a lot to do now it's this short (not my first option, but I was too tired to have it any longer, and the school has a rule about tying up your hair if it shoulder length or longer.) I'll miss seeing people, too, but I don't really know anyone that well; all of my friends graduated last year. It'll be worse next year, I don't really know any of the girls who'll be Class of 2011.

I will get to go out on weekends, apart from tutoring... I've got a membership for the footy again, and am determined to go every week, even if it kills me, or I have to rearrange tutoring. And I can see friends, if I'm able to. That's always the problem, I think of things I'd like to do, or enjoy, but can't physically do. (Or mentally. Like study. It's beyond me at the moment, I'm that sleep deprived.)

I just need to get through the next two years, then I can rest. And figure out what the hell I'm meant to do with my screwed up life. I mean, normal people don't turn 20 in their final year of high school. If I could just do my Year 12 faster, I'd have more time for everything. But high school is wasting so much of my life. If I could study, or get A+'s in my subjects, or go out with friends, or celebrate my birthdays, it wouldn't be so much of a waste. But I basically get up, go to school, come home, lie down, and have tutoring on my days off. And am frequently unable to complete homework or study. (How I managed to get an A for semester 1 of German, and a B for semester 2 is beyond me. I didn't study from March onwards!) But getting marks like that gives me a little hope for getting a decent ENTER score. I don't think I can actually fail. (I mean, some people do, but if I keep this up in all my subjects, I'll be okay.)

Anyway, it's nearly 3.45am, so I should try and sleep. Plus I feel my early-morning-haven't-slept-yet headache starting. Leave a comment if you've read something and you want to respond to it... Even study tips for Maths Methods, or other things I could write about... Something you want to know more about.... Yeah. It was really cool discovering more than 1 person actually reads this. =)

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

Friday, January 8, 2010

Another year gone, another year wasted... And the need to speak up.

It's been about 11 years since I first got Epstein-Barr, (Glandular Fever) and about 6 years since my diagnosis and since my ME/CFS completely tore apart my life. (It continues to do so.)

My doctors told me when I was 13 that I'd be healthy by the next year (Year 8.) They were wrong. I missed school that year, and was hospitalised once. Then they said I'd be healthy by Year 9. They were right, until I entered a "rehab" program. It was just horrific exercise day after day, even when I was dizzy and blacking out. It didn't matter to the physio, the hydrotherapist or the teacher. I was lied to; it was not a graduated exercise program, tailored to the needs of the individual. The other girl I was in with had a breakdown and had to repeat Year 11. I was in Year 9, and missed most of the remaining second semester. My school passed me based on my mid-year results, just as they passed me for Year 8 based on my Year 7 results. To quote my former principal "Alex could miss school until Year 11 and not have any problems." Yes, I could've, academically, but socially, I'd hate it.
Year 10 was okay, but I worsened again at the middle of the year, and only continued to study Year 11 Maths Methods. I was passed for other subjects based on my mid-years. The only constant from Year 9 was German. I rarely missed a class, and studied whenever I could. Straight A's or A+'s were the result, but they were getting harder for me to achieve as I got sicker. Year 11 was a good year. I did the minimum required: 4 subjects. German, Maths Methods CAS, English, Literature in semester 1, and History in semester 2.
I was all set to do 2 subjects in 2009, as half of my Year 12 until I saw a sleep clinician after a sleep study. I was diagnosed with Idiopathic Hypersomnolence, which meant I had excessive daytime sleepiness and needed a lot more sleep at night than the average person. However, the sleep clinician insisted I get up daily at 10am - which would be moved back to 8am, even on weekends, I was told, regardless of whether I'd slept at all. Seeing as some days I don't get to sleep until 7am, this is ridiculous. When I asked how I could get my required 10hrs sleep, I was told: "Go to bed early." I'm sorry, but it doesn't work that way. I've tried going to bed at 10pm. I lie there for hours, until 3am at the earliest. If I need to get up at 6.30am, I can cope. But this 10am deadline wrecked my sleeping pattern. I fell asleep later and later each day, and the sleep clinician refused to treat my headaches and nausea resulting from her ill planned regime. When she diagnosed me, she said that "Despite your CFS, I can cure you. You'll be able to go to parties, and drink, and graduate this year." We kept asking if it was certain, and we were told it was. I rang my school, told my father (my mother took me to this appointment) and was really excited. Until I got worse. And worse. But we were told I'd get worse, then improve incredibly. At the next appointment, she denied ever saying this. Then my mother and I pointed out there were two adults who heard this, (myself and my mother) to which the sleep clinician replied: "Well, we could talk about this all day, but I don't want to." Translation: "I'm lying, but can't admit it because I'm liable for false or irresponsible prognoses." Plus the dosage of Modafinil was causing incredible dizziness and disorientation - I'd missed a week of school, and a SAC. I dropped English, and the sleep clinician wouldn't help; my dose couldn't be decreased, there were no other medications, and I can't die if I'm only getting 2hrs' broken sleep per night. Apparently. In short, the psychological impact of this, plus the exhaustion from the side effects caused a crash. By August, I could barely make it to class for my only subject: German.
And I continue to get worse. I'm no longer seeing that sleep clinician; I gave up. Someone who refuses to answer questions like: "Are there side effects?" or "How do I survive on 2hrs' sleep when I need 10hrs?" in verbal and written form is just impossible to deal with. And exhausting. I don't need the stress and exhaustion.

Anyway, Wednesday was my first day out of bed since Boxing Day, (I went to see Sherlock Holmes, and bought a few tops at Jay Jays) and that was only to go to a pain clinic appointment. It's a total waste of time unless the Gabapentin actually works at this higher dose. For it to work, it has to make me sleep, because sleep is the only thing that eases or prevents pain. And until Thursday night (morning, really) I'd been going to sleep at 7am or later, and unable to get out of bed until 5pm. But I took the Gabapentin, and slept from 5am - 2pm on Thursday, and actually felt awake and able to move that afternoon.

It's about 4.15am on Friday now, and I'm hoping that the Gabapentin will work again, and that it wasn't a one off. People take sleep for granted. And being able to get out of bed. Until you can't sleep, or get out of bed, you will take these things for granted. I'm not lazy. No, lying there and pretending I'm asleep will not trick my body into sleeping. ME/CFS is most definitely not in my head, not caused by mass hysteria, and I am not faking it for attention. So pretending I'm healthy will not mean I'm healthy, and can do "normal" things. It's insulting when people suggest that. But if you mean well when you suggest eating more red meat, or trying not to stress about Year 12, I'll try not to explain for the millionth time about ME/CFS. Sometimes it's easier to say, "Yeah, I'll try that." or "Maybe, I don't know, though." rather than explaining, contradicting, and making the person feel helpless/useless. But that's what it's like, if you're close to someone who's got ME/CFS. You don't know what to do, you don't know how to help, and you feel awful that this person is suffering doubly; with the illness, and the discrimination, hatred and disbelief/ignorance of nearly everyone they meet.

I'm still getting worse. But when I sleep well, (that can mean 3hrs' unbroken sleep; that was what enabled me to go out on Boxing Day) I feel so much better. The nausea fades, I'm not as dizzy or weak, I can think straight, I'm less dead inside, and the pain is kept away for most or all of the day. I hope the Gabapentin works. I could do well in Maths Methods CAS this year if it does. I'm hoping for a score around 38. And it looks like I'll do it by Distance Education; less energy wasted on putting on a uniform, looking tidy, remembering my summer hat, lunch and my books. Less social contact, (who am I kidding, it'll be practically no social contact) but time to see my tutor more often, and maybe join a gym again, build up my strength. I did that in 2007/2008. Until I went into Year 11, it worked brilliantly. But the stress was so great that I had to quit. Maybe, if I sleep, I'll do well in Methods, and be able to build up some strength.

I could do much better in every subject if I were healthy. But that's stupid. I'm not healthy, and there's nothing that anyone can do to help me. A friend suggested my parents take me overseas to find treatments. That's all very well if you're rich, and have that kind of disposable income. I'm not. We're not. And we have no family support, which I should be used to, but I never will be. People shouldn't be denied sympathy or help just because they "don't look sick." My grandmother said that about me. My well educated aunt, who is getting her Ph.D suggested it was mass hysteria, and my other aunt said "Oh, that's like when I clean the house, and cook dinner, and babysit my grandchildren, I'm tired then." It's not like that. Exercise will not make it better. It's not in my head. I am not crazy, faking it, or desperate for attention. Believe me, I'd rather be a normal teenager who gets yelled at for coming home after curfew, drunk.

I'd qualify for euthanasia if death were certain or imminent. I have no quality of life, and no reason to get up each day. But I do. Because I have to graduate from high school, and I have to go to uni and study arts, then law, unless I'm still really sick, then I'll do accounting. I have to. And it would mean so much to me if this illness had struck me when I had "pieces of paper" like a high school certificate AND a uni degree. It matters. I would have accomplished something. I'd  have a reason to get out of bed; to get better, to be the best lawyer or accountant I could be. To help people. (Well, not really as an accountant, but Atticus Finch was the whole reason I wanted to be a lawyer. I decided when I was 9, and I finished "To Kill A Mockingbird." You can't read a book like that and not be changed.)

If I had some energy, I'd do more to promote awareness of ME/CFS, but with my life so completely screwed up, all I can do is write a blog that no one reads. And give talks at school, to which no one listens or understands the message. We need to speak up. And before it's too late.

"First they came for the Communists, and I didn't speak up, because I wasn't a Communist.
Then they came for the sick, the so-called incurables, and I didn't speak up, because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up, because I wasn't a Jew.
Then they came for me, and by that time there was no one left to speak up for me."
 - Niemoller, 1946.

I'm not saying I'm Jewish. I'm an atheist. I'm not saying having ME/CFS can be compared to the suffering of millions in the Holocaust. That's ridiculous. It's not possible. I'm saying that we need to speak up for those who do not have a voice. I read this at school, as part of a speech about ME/CFS awareness, and the girls assumed I was comparing my suffering to that of millions during the Holocaust. I don't know how anyone could misinterpret this poem in that way. The problem with ME/CFS is that it alienates people, and that the sufferers are often too exhausted by this debilitating illness to speak up, to rally supporters.

We need to be a voice for those who are without one.