Sunday, May 23, 2010


Yes, I've taken another step into the 21st century; I now have a Tumblr account... I've just posted an introductory post, reblogged some funny stuff, and posted some of my fave pics. I'm not sure exactly what else to do with it. It's a mini-blogging service, right? Does that mean that when I'm too tired to write a full post here, I can write a mini one there? ... I might just do that! Um, anyway, this is me on Tumblr: I figured I should try it out, as a lot of people on Facebook and on Twitter have it. I like it so far, especially the background I chose for my Tumblr. =D

Side effects...
Because my specialist put me on a dose that was so high it's classified as Naltrexone, not Low Dose Naltrexone, I got one of the worst side effects possible: lethargy/fatigue/exhaustion. So that's why I've been feeling more zombie-like than usual this past week! I also had a lot of nausea and dizziness/lightheadedness. Now that I'm down to about 6mg, I should have milder nausea and less dizziness/lightheadedness. Although the nausea was shocking yesterday when I got up for tutoring; I couldn't sit up or even drink. Thankfully I had some Ondansetron!

The next two weeks are assigned to a two week project SAC, designed to be completed in about 7.5hrs max. After that, I have a 60 minute SAC, then I start Unit 4, which begins with antidifferentiation. I had a bit of trouble with that in Year 11, although it was quite rushed when we studied it. Hopefully I'll do better this time around! I have maths tutoring today and we're going to revise the topics my teacher said would be covered in the SAC. That way I'll be fully prepared. (I hope; Mum had a look [she's my supervisor] and said it looked really long.) The next SAC (the 60 minute one) is on calculus/differentiation and circular functions, so I definitely need to revise circular functions before that week begins. I got a Very High on my last SAC, which is an A/A+, I really hope I can maintain that for my school work and SACs.
Exams are my main worry; I get panic attacks about them, and get exam "panic" - my mind can go blank from fear. It happened twice in two Year 11 maths tests. Plus it's quite scary being in a room with just the examiner watching you. And this time it won't be a teacher from my school. =( There's a morning exam, so I don't know how well I'll do on that one, as I can't function until midday, at least. The other one starts just before midday, I think, so that should be okay. I've applied to sit them at home, so that way I can lie down during my rest breaks. I hope I get a good mark; my teacher thinks I will definitely pass, which is brilliant! She actually thought I'd been a student who excelled at maths my whole life! =o

I slept a bit better the other night, and I seem to be able to get to sleep by 1.30am at the moment, but I wake quite regularly. Today I went to bed at midnight, fell asleep at around 1am, woke at about 2am, then 4.50am, and I'm still awake. I tried to get back to sleep, but couldn't, so I figured I'd write a blog post. I can go to school on 3 hours sleep, it's just trying to get 3 hours of unbroken sleep. I'm really worried about my sleeping pattern because I start orientation in Nov/Dec, and I need to be able to get up at 6.30am, or 6.50am at the latest. Which means I need some solid sleep, and to be able to sleep from about midnight. I know someone my age needs 9-10 hours of sleep per night, and I need more than that because of my Idiopathic Hypersomnolence, but, realistically, I haven't slept like that since I was about 10. If one thing gets sorted out this year, or changes for the better, I want it to be my sleep. (Or "sleep pattern")

I guess that's it.
Thanks for all your comments, I really appreciate every one of them, and respond to them as soon as I can; lately I'm not able to use my laptop much at all. I'll try to sleep now, seeing as it's after 6am. If you've got any tips on how to use Tumblr, how to cope with lack of sleep/side effects/illness or exam anxiety, I'd love to hear them! =) Thanks for reading!

Monday, May 17, 2010

Good news!

First of all, the good (medical) news:
My specialist agreed to prescribe LDN for me. (That's Low Dose Naltrexone, if you didn't know. ^.^) She said to take a quarter of a tablet, but didn't specify when or how to take it, or whether I can or should increase the doseage if needed. Each tablet is 50mg, so a quarter (it's hard to make it exact, even with a pill cutter) is about 12.5mg. So that's what I'm taking each night.
I'm going to see my GP, ask what the highest dose is, how I should go off it (if I need to) and how long it needs before it starts working. My specialist had never prescribed LDN before, probably because her patients trust her and don't do their own research!!
I've been on it since the 12/05/10, and it does seem to make headaches less severe and Panadol work better for them, but that could just be a placebo effect, or my mind making it think it's doing that. Because I studied for 5.5hrs today, I had a lot of back pain. It wasn't as bad as last week; I was incapacitated then, and totally bedbound, unable to move for about 4hrs. This week, it was still awful pain, but I could manage to do a few things before lying down with a heatpack for 1.5hrs and then having a hot shower.
Heat seems to really help my pain. It didn't help my rheumatism. I had a bad attack of it the other night, so I was lying down, mum was bringing heatpacks and I had my electric blanket on full. But mum's arthritis was playing up, too (our pain always seems to coincide) so we both want a definitive test to rule out all types of arthritis. But no side effects so far from LDN, because I was getting headaches before it, I think that it's just normal ME headaches.
I can only take Panadol or Nurofen while on LDN, anything with codeine will cause a reaction similar to an opiod overdose. My specialist doesn't know what it'd look like, so mum took all meds with codeine out of my room. My memory is so bad; I thought Mersyndol didn't have codeine!!

The good (academic) news:
I got my SAC in the mail last week, and I got a "Very High", which means my mark is in the 80% - 100% range. I think I got an A+, but after I saw that I got higher than a B, I was so happy I couldn't be bothered calculating my result as a percentage. So that's brilliant, because it counts for my work from Weeks 4-7! I'm really happy, but worried about my next SAC. It sounds rather complex.

Fail!!! (Or "brain fog" in the ME world)
I thought my SAC was this week, and that's why the Distance Education people had posted the SAC to my mum (my supervisor) last week. I got my weeks confused. This week is Week 13, which is more calculus/differentiation, but Weeks 14 and 15 are the SAC. It's a project on calculus/differentiation, and it's supposed to take no more than 7hrs in total. Or something like that. The week after that (Week 16) I have another SAC, which is a test-format SAC on, I guess, calculus/differentiation. Then I think it's holidays. So I'll be really busy for the next few weeks!! Although, I've already completed this week's required homework, and my teacher is visiting on Tuesday, so I can show her what I'm having trouble with, and we can work out what amendments to the requirements would be best for me.

Birthday presents:
I was finally able to go out a week or so ago and buy a new pair of tracksuit pants (one I bought in January stretched strangely, so now they're too long to wear. The fabric was waaaay too stretchy!! (On the old pair!) I still need to get this new pair taken up at the tailor's. I also bought new winter pyjamas, and a hoodie that matches them. Plus slippers. I figured I may as well get really comfortable pyjamas, seeing as I spend so much time in them! I got one blue pair (paisely blue/aqua with a royal blue top) and a purple pair (white/purple striped pants with a purple top.)  I still want to buy a dressing gown, though. One of those warm ones. I haven't found one yet, but I'll keep looking! I used my gift card and some of the money I got for my birthday. There was a huge special on at that particular store, which was great! I may even get a second hoodie from there; quite cheap, very comfortable and warm.

My sleep is all over the place. Most nights I'm up until 6am, or until I get a headache, nausea and dizziness, (from lack of sleep) so that I have to lie down with my eyes closed, and not move. Last night, though, I went to bed at 11.25pm, woke at 3.30am, and a few times in between. I've been up since. It's about 5.10am now, so I'm going to try and sleep. I can never catch up on sleep, because in the mornings (7.30am - 9am) there's "getting ready for school noise" and in the afternoons/evenings there's "arriving home/playing PS2, etc/getting dinner ready noise" So I really need to get my sleep sorted. I have no idea how to, though. Any ideas? (Apart from anything sleep hygeine related; that's what got my sleep into this freaky pattern in the first place!)

Thanks so much for reading. Any comments, feedback, or tips would be greatly appreciated! Take care.

Wednesday, May 12, 2010

It's International ME/CFS Awareness Day!!!

Just a short post, I think. It's quite late already, and I have a personal training session in the afternoon.

A link, for the uninitiated!
Okay, first of all: What is ME/CFS/CFIDS? Check out this link if you don't know what it is, want to know more, or are just curious.
(This link was posted on Twitter by @Stroopwaffle, and written by @DiamonDie. (Both ME/CFS sufferers; @Stroopwaffle is bedbound and unable to sit up.)

How to help, and what not to say/do:
My experience has been one of frustration, exhaustion, confusion and intolerance. ME/CFS is not an illness that is "in your head." Someone who suffers from it isn't "totally crazy and an attention seeking b*tch." I know I don't want pity; I want understanding, people to care, instead of dismissing ME/CFS completely. (And by doing that, they dismiss/disregard me.)
A kind word, offers of help - whether it's bringing someone a meal, or offering to help them with their grocery shopping. Even a smile, or a comment like "I love your haircut, it looks BRILLIANT!!" will make me happy for the next week, at least! You see, it's the small things that count; but money needs to be put into research. Please consider donating.

A short history:
   I got EBV at the age of 7; and it started with sore throats, every day. Then I got muscular-skeletal pain; mostly in my legs. Then the post-exertional malaise. When I went to the doctors, they would say I was either lazy, depressed, depressed and anxious or just needed more exercise. The reason for the pain was that "your legs are too long for your body."
   By the time I was 9 I had a cancer scare, and that's when my severe spinal/back pain began. I was given an injection of morphine; which broke the cycle of "severe muscular back spasms."
I developed the insomnia aspect at the age of 10 or 11; I'd go to sleep at 11pm, wake at 3am, then stay awake for at least 2hrs. Apparently I was still depressed. (Rather, I was furious at doctors who wouldn't listen as soon as they saw I didn't have anaemia.)
   At the end of Grade 6 (my final year of primary school) I developed pneumonia and a collapsed lung. It's proven that a secondary infection in ME/CFS leads to a rapid decline in health.
By the time I'd "recovered" (I still can't sing; I run out of breath all the time, but there are no test abnormalities) from pneumonia, I was in Year 7, the first year of high school.
   The first semester was alright, but my PE teacher would yell at me; she was convinced I wasn't trying. I would stay up until 3am studying, every night, getting 3hrs broken sleep at the most.
   But by second semester, my teachers were saying I'd forget to bring a book to class, forget deadlines for homework, etc. And all my teachers said "Something is wrong, Alex is so conscientious!"
   I finally found a GP who referred me to an paediactric ME/CFS specialist. This was in December of 2004, when I was at the end of Year 7.
   Things have just gone downhill; my case was ignored until I was beyond help. I still see this specialist, though she is really only good for filling forms about my illness and writing prescriptions.

What it's like to be me at the moment:
I have severe muscular-skeletal pain. It feels like there are thousands of needles stabbing from inside your bones. My muscles ache, cramp and spasm.
My limbs feel like they are filled with lead; every step and movement is an enourmous effort.
My spinal/back pain can leave me bedbound, unable to move for up to 6 hours. It's those times I'm so grateful I have an iPod.
I live, pretty much, in my room. (In bed, propped up by pillows, or lying down, immobile.)
I don't sleep like normal people, and I never wake refreshed. I wake every 10mins - 50mins, and at the moment I am awake until 6am. No one can help my sleep; I've tried everything.
My short term memory is almost gone. I forget words. I forget what day it is, where I am, or, to give you an example, I can have a key in my hand, but not know what it's called, or how to use it. Even if I did, I might not have the strength to reach the lock! I can't hold conversations very often; it is overwhelming. I can't understand or keep up with it.
I am overwhelmed by the slightest noise, bright colours, smells (anything from dinner cooking to a deodorant.) This means that I develop intense headache/nausea when I am watching television, and someone walks around the room, eats, or talks.
I am lonely, and sick of being told "it's all in your head" or "stop whining; you're not sick" Studying by distance education means I am even more lonely and isolated. I struggle to study one subject; to study for 6hrs means I will be bedbound for the next 3 days or more. But that way I get all my homework done on the weekend.

Why am I telling you this?
Because people seem to relate best to personal stories; I have kept mine brief. To catalogue all my ME/CFS experiences between the ages of 7 and 19 would be too long a post! I only hope that you read this, and take something away from it. Whether it spurs you to donate to your state's ME/CFS support/awareness group, or to promote awareness, or to volunteer. There are many who are sicker than me, and would need more help. I have my mother. I'd be lost and unable to care for myself without her.

I hope you've already bought your blue ribbons, or purple, for Fibromyalgia!! Wear them with pride!!(They can be purchased from your state's ME/CFS support/awareness group) Raise awareness, be a voice for those who are without one. Please.

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