Friday, October 15, 2010


I'm back!
I was finally able to log on to my laptop for the first time in ages. (Seriously, the last time I could use it was when I wrote the previous blog post!) So, I guess an update first, right? Here goes:
  • The goLITEBLU*** was a disaster. After two migraines that lasted 7-10 days, my sleep clinician said to try the goLITEBLU again, but if I got another long migraine, then I shouldn't keep using it. So I tried it.
  • After 4 days of a migraine, my Mum decided to take me to the ER. (I didn't want to go, as I figured they wouldn't help me if MS Contin wasn't working.) I spent hours curled up on a couch, (not at a children's hospital anymore >.<) before I finally got seen by a doctor and was given a bed. I had to fight for morphine, they wanted to give me Largactil, but that causes me HEADACHES!! So I had IV re-hydration, an injection of morphine and an injection of Ondansetron. After 9hrs in the ER, including wait time, (at a private hospital!) I went home. I had McDonald's drive through on the way back, to celebrate being migraine free for the first time in nearly 2wks! ^.^
  • I'm no longer using the goLITEBLU. I can't believe the sleep clinician didn't even ask if there was a family history of migraines before telling me to use it. (The brochure warns of initial nausea and headaches.) There's migraines on both sides of the family, plus my Mum, my father, younger brother and I get them!
  • I got a virus the next day, (Wed, 06/10/10) so I was on bed rest for the next 5 days. Except for the Saturday, (09/10/10) when I had 3hrs of maths tutoring. I couldn't stick to my sleep routine, let alone sleep hygiene when I felt so ill!
This is really worrying me.
I'm becoming more disabled each day. I wasn't able to study until this Wednesday, and I sat my 2 hour 20mins practice exam. (Not incl. reading time of 15mins!) I finished in the allotted time, felt I couldn't take any breaks, and didn't move from the same position the whole time. It's what I do when I'm hyper-stressed. So, of course, I finish, correct it (and find I got a damn good score, considering I can barely study) and then move. And I nearly collapsed! My whole back and neck had seized up and were intensely painful, plus my left hand was cramping and shaking. I wish I could sit my maths exams on laptops; I never felt this bad after my German practice exams/real exams last year! So I had a really hot shower, which helped my chills and pain, plus I wasn't feeling so much like I had the flu by then.

I seem to feel like I've been hit with a flu as soon as I've pushed too far past my limits. It's scary; I worry every time it happens that it's an actual flu or virus! I've barely been able to get out of bed this past week. And small things, like helping out by making food for my Mum and younger brother, (they've both had a terrible flu until today) or getting myself dressed make me absolutely exhausted, dizzy and weak. And not my normal level of exhaustion; this is the sort of exhaustion that makes me wonder if I can keep living, or if I'll just end up trapped in bed. Forever.

These illnesses, their severity, and the fact that virtually no one believes that Fibromyalgia or ME/CFS exist, all terrify me. If people understood, my life would almost be worth living.

More study. Ew.
It's past 1am on Friday now, and today I really need to do cheatsheets for Linear, Quadratics, Cubics/Quartics, Higher Order Polynomials/Gallery of Graphs. I can use bits and pieces from older cheatsheets, but I do need to do a Quadratics one from scratch, and maybe redo the Linear and Cubics/Quartics one.

... But I also want need to escape my bed, and go out. I hate being sick! Words can't describe it anymore. Hm... I really, desperately need to get my fringe cut, so maybe I could look at a few stores after? I'd rather do that than wind up in heaps of pain 'cause I studied too much!

***The goLITEBLU is meant to regulate your body clock, so you sleep, wake, and eat at normal times. It also should make you "happy and energetic." It's given me migraines, Ondansetron-worthy nausea, and made me so sleepy that I've had to triple my dose of wakefulness meds, on my doctor's orders. It also made me starving all day long, but then made me feel sick as soon as I ate.

Thanks for reading! I hope I improve soon, so I can study, and maybe even blog. I'm dying to take pics and post them. (Pics of my recent purchases, including a summer-y dress!)
Alex. xoxo


  1. I'm so glad to hear that you are finally migraine free! Hopefully you can get well from being sick soon too!

    When I was in college I was able to work with our disability services to get a time and a half (ex: 1.5 hrs instead of 1 hr) to take my exams. This really helped me because I could stretch and even clear my mind easier. Maybe your school would allow something like that?

    Don't loose hope, more and more people are hearing and learning about and believing in fibromyalgia! Awareness campaigns are helping and more and more scientific research shows the physical changes in our brain imaging, etc...

  2. I am so sorry about your conditions and all that you have to go through. I can only say there are a lot of us with Fibromyalgia and other conditions and many more docs are finally taking us seriously.

    I suffer horribly from migraines since I was 3 years old; They are so painful and the throwing up and light flashes; you are just a heap of pain; I get them about 10 days out of the month.

    Weirdly enough, the last one only was for a day; yes, I was grateful but felt like the worst migraine in my life; practically od'd on esgic plus' and could only lie still while pushing hard on my head.

    Only 3 times I went to the ER; the last 2 times, I went to a different ER; OMG! The difference was incredible! The doc knew about fibro and spondylitis and migraines. There was no waiting and he took me right away into a dark room and gave me a demerol injection (allergic to morphine). On the way home, he gave me 'one for the road' and lectured me to not be so stoic and come into the ER when I am in so much pain.

    I was wondering if you tried the Imitrex for migraines. I have tried it; it has helped sometimes but only if I catch it right away; then I stopped using it because of the side effects.

    Don't lose hope; my daughter just completed college; she has fibro and lupus; Sometimes, it was awful; other times she felt good but she did it and as Felicia said, she also was given extra time to complete exams.

    Remember to rest when you can't go on and you aren't alone; I wish you well.

    Nina xo

  3. Wow! That sounds awful! I wondered what happen to you! I'm glad you aren't taking that stuff anymore and that you are migraine free now.

    Having these illnesses are twice as hard because we have very few people who believe us.

    On the other side, however, there are many people like me that have these illnesses and KNOW you are REALLY sick.

    Hang in there and rest if you can!

  4. Thanks for all the comments! I love feedback!

    @FeliciaFibro: I've applied to the state body that regulates the Year 12 exams & have been granted:
    - 10mins extra writing time per hour (first ever ME/CFS or Fibro patient to get this provision)
    - permission to stand/stretch
    - permission to take medications
    - permission to take food/drink into exams
    - permission to take 10min rest breaks
    - permission to sit exams at home
    As I'll be sitting them at home, my rest breaks can be me lying on the couch!
    I'll take easy snacks, like muesli bars & little juice boxes. Maybe some chocolate!
    Thanks! xoxo

    @Honeybell: Thank you for telling me about your daughter; I feel a bit better about my future when I hear stories of people really living despite being so disabled.
    One girl I met on Twitter was bedbound for 3 years, and is now working full time, has a boyfriend, and is healthy.
    I don't like to get my hopes up, but it's always reassuring to hear of people who are as ill as I am, who then recover.
    I don't like to rest, as I never know when I'll be struck by a virus, so I try to do everything at once. I know it is detrimental for my health, but I'll never have to do it again; studying for Lit or Legal Studies is totally different! (My subjects for next year.)
    Thanks! xoxo

    @dominique: I'm so grateful for the Twitter community who understand what it's like to be bedbound and isolated, or full of rage at the world because of our disabilities.
    I wish I could meet someone IRL who understood. The one friend who did understand has graduated, and is at uni... I'm too ill to see people, let alone go to one club after another, drinking shots! (This friend is very studious, but people do drink and party; I can't.)
    I will rest once I've completed all my past paper exams and my bound reference!
    Thanks so much! xoxo

  5. My brainfog kicked in =\

    @Honeybell: I haven't heard of, or tried Imitrex, only Sandomigran. How does it work? (preventative or painkiller?) Thanks for the idea for a med! =)

  6. Alex, that is awesome!! Way to set a precedent for other people with fibromyalgia and CFS! Let me know how much you think the provisions help after a few exams.

  7. @FeliciaFibro: I had nearly all the same special provisions last year, except I sat my German exams at school, and I didn't know I could apply to take food/drink in. The maximum writing time per hour is 20mins, but in order to get that you generally have to have a severe learning disability or something similar.

    The extra writing time helped a lot on the German exam, because in the extra 2hrs I could check my grammar and answers, whereas normally I wouldn't have time to do so. With these maths exams, I think it'll just mean it's more likely I'll complete the whole exam.

    My specialist said this sets a precedent for all Year 11/Year 12 students with ME/CFS or Fibromyalgia, so no one else should have to fight as hard as my Mum and I did! =)

    What do you think of my new posts?