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.


  1. Hahahaha there is some cool stuff at Smiggle eh! I made Saul take me there as I was unwell, (I nearly collapsed in the shop), but he didn't seem so excited as I was.

    Surely there is a way around the nine pill dilemma - there has to be - but I would imagine that it would require alot of energy trekking around specialists and going over and over and over your history.

    Here if you need me, my dear

  2. Hey! I got another 10 wafers, only allowed to take a few a month. Rationing, lol! Found out my first pack expires 02/10 (February this year) so I'm gonna go complain to the pharmacist. He doesn't really check expiration dates, and it was Australia Day... Still, so glad I got more Ondansetron!

    I went to Smiggle and got a cute diary (aqua) that fits in all my bags. I might post a pic on Twitter sometime. I also got some scented pens. Decided to do rough versions of notes in one exercise book, and do them in pretty colours in another, untouched exercise book! =) Should help me remember formulas!

    How are you?

  3. Say you're allergic to maxalon, which is a cheaper version of ondansetron. :) (unless of course you actually are...) lol. Hope you're able to get some more. Keep on rationing until then.

  4. It's a restricted medication; therefore it's not simply that it's more expensive, but I appreciate the thought. Cost isn't an object when it comes to the ability to eat and drink.

    Maxolon barely works, Stemetil (recommended after I said Maxolon did nothing) works a little more, but Ondansetron helps me tolerate various stimuli, alleiviates nausea, headaches/migrains and generally makes it easier to eat and drink.

    As Ondansetron is restricted by the government, the reason "I'm allergic to everything else" just doesn't cut it. My specialists would tell me to suffer through it if I said that.