Sunday, March 21, 2010

'Alice In Wonderland'

'Alice In Wonderland'
Yesterday I finally got out of the house, & went to see 'Alice In Wonderland' with a friend I met during my August admission to hospital last year. I thought it was a great film & the special effects were amazing. Johnny Depp was brilliant as the Mad Hatter... He does mad so well! I thought the actress who played Alice did a really good job, too, although her face was a little emotionless or blank at times. I didn't see it in 3D - it gives my mum & younger brother migraines, & made me sick the last time I saw anything in 3D. It was amazing to go out with someone around my age, instead of being stuck inside, or only going out to get clothes with my mum. Hopefully I can do it again sometime soon, I know that today I'm really achey & tired.

19 today...
Today was my 19th birthday. To be honest, I don't feel any older, but I think that might be because I haven't had a chance to be a teenager. My life pretty much stopped at 13. I can't even get my learner's permit; because of the years of sleep problems/deprivation, I could fall asleep at the wheel. Then there's the part where I can't focus on Methods some days, never mind a road with multiple distractions, plus learning to drive. I think if you wait until you're 21 to try for your learner's, the whole process of getting your license is fast-tracked considerably. So I might just do that, unless I magically improve. This has been my worst birthday... ever. The last time I was this sick was when I was 14, bed-bound or hospitalised. All my friends are at uni, & I'm stuck here, doing distance education. Things suck at home, too. (I'm not going to talk about it here.) ... I don't want to get any older. There's no point. I just get older & have nothing to show for it. I've really had it with ME/CFS. I never thought I'd get this bad, again.

I'd asked for it not to be a birthday this year, so no presents, or cake, etc. But my mum went ahead & got me an iTunes voucher, 2 really pretty pill containers (they have flowers on them, each is a different shade of blue) & a voucher for my local shopping centre, so I can spend it at any store! Oh, & a Kinder Surprise egg. I used to love those when I was little!! My brother got me an iTunes voucher, too, & they both wrote really lovely things in the cards. My father couldn't have forgotten it was my birthday, but took a sheet of A4 paper, folded it in half, wrote 'Happy Birthday' on the front, & said he knew I'd get better, because I was so determined, & that he was sorry he couldn't help. I wasn't annoyed about the fact that he could've got me a card, or a present, (I asked for a happy, argument free day, which didn't happen) it was that he didn't realise that he can help. By reducing the stress. I say it every week. I guess you can't get through to some people. My half-brother from Germany also got me a present. It's a German picture-story book. I will find the energy to figure out what it says; translating the birthday card was tiring enough! (It's got a lot of words...)

Doctor's appointment
My specialist thinks things will improve dramatically as soon as I stop stressing & stop having panic attacks. (Should that read: "being put under so much stress"?) She also thinks that my back pain will be fixed by me sitting up straight. Which is BS, although I'm trying it, purely to prove her wrong, AGAIN. That's what she said when I was 14, so I improved my posture by 15, but when I get worse, my posture gets worse. I literally do not have the strength to hold myself upright. I've exhausted all my options for pain relief, & my scoliosis is still "mild"... But I just wish someone would listen when I say "The only thing that stopped this pain was an injection of morphine when I was 9 years old. The pain disappeared for months, only to reappear the following year, & worsen as my ME/CFS worsened. Uninterrupted sleep is the only thing that helps." She laughed when I explained I was worried about being sick & dependent on the disability pension in 20 years' time. It's not funny, but she thinks it's ridiculous I should worry about my future. If I've seen all the specialists, tried all the regimes, & nothing has helped, not to mention the fact that my specialist admits she doesn't know what to do anymore, why shouldn't I worry? I'm not getting better. I wanted a life, I wanted to go to uni & study Law. Now I might just be stuck in this house forever.

I guess that's it. A pretty depressing post, but there isn't much to my life anymore. It all gets consumed by ME/CFS. I haven't even finished last week's Methods homework, & my tutor might assign me more via Facebook to make up for the fact we couldn't have a session this weekend. I might check if Skins has loaded yet. I think it's the series final.


  1. Happy un-Birthday ;)
    I went out with a friend (and only a friend, not a boyfriend or a parent as well) for the first time on Wednesday and it was an amazing feeling.
    I firmly believe you will go to uni and you will study law. It will happen. Please don't think it won't.
    Have you considered a chiropractor? I've always seen one and saw one at my absolute worst too (a lovely one came to my house and bought his own table). So much benefit.

    You've got nothing to show for turning 19? I used to always say this and my friends pointed out that I was getting through every day, which was a damn struggle. You're doing that and you've been doing it for years. You're amazing, it's amazing. You've got heaps to show for it & I used to always say the older I get the closer I am to getting back my life.

    I know I sound like a bit of a crazy annoying positive idiot, I'm sorry, it's just I've been there (blah blah) and I know squashing my bad thoughts and writing down all the stuff I'd do when I got better etc made a huge difference to how it all turned out. Don't let it all get to you 0 even though I know birthdays are shit when sick.

    Sending you love x

  2. Happy belated birthday! I'm sorry it was so awful for you. I found your blog from your tweet, actually.

    I'm nominating you for the Happiness Award, cuz I think you need some happy thoughts. Visit my blog for details at

  3. @Natalie: I know, my mum says that just getting through each day is a struggle, & that I've accomplished so much by raising awareness & going to school. I just want to be like my friends: have high school finished with, & having fun/learning brilliant things at uni.

    I did see a chiropractor, it didn't help, unfortunately. My posture has improved over the past week or so; my mum & younger brother have commented on it. Maybe the reduced pain will eventuate... Sometime!

    I'm so glad you understand about not wanting to celebrate birthdays, etc. when you know you're going to be sick for a while longer, & no one can help you at all. Not many people can relate or understand the concept!

    Thanks so much & I feel so much better when people understand & don't say I'm a 'whiner who wants attention'... I just think this illness is so misunderstood! Take care. x

    @Shelli: Thank you! It was awful, (my 19th) but this evening some flowers arrived for me, with a balloon & card saying 'happy birthday'.

    It was from a family whose mother met mine when I was 6mths old. I became too sick to see her kids when I was 13, (we'd see each other all the time; sleepovers, movies, playgrounds, bbq's, etc.) but they still send flowers when I'm in hospital.

    I was stunned. But my father brought them in to me, smiling, so I thought he'd ordered them to apologise for yesterday. Then I read the card, & cried; I was ecstatic they'd thought of me & cared so much, but couldn't believe my father acted like that & wouldn't apologise.

    Thanks for nominating me for the Happiness Award; Idk what it is, but when it's not 3.15am & I have some energy, I .will. check out your blog! I do need happy thoughts, but just having so many people on Facebook, Twitter, etc. wishing me a happy birthday, or an improvement in my health meant so much to me! Thanks so much. x


    I really appreciate every reader & everyone who comments; it's hard to keep in touch with the outside world/reality when you're this ill & doing distance education. If anyone has any tips for my blog, whether it's design or layout of the posts, feel free to comment! I'm a newbie at this. =p Thanks, you guys. =D

  4. This is probably no help whatsoever but I really get what you are going through. I'm 20 and have been trying to learn to drive since I was 17 and I feel so hopeless at it. I manage to get a set of lessons in and then I feel so exhausted I have to give it up again. I feel like I am just throwing money away :( I feel stranded as I have to rely on lifts everywhere.

  5. @Bobbydazzle: Um, thanks. But I figure I'll be able to at least .learn. to drive by the time I'm 21. I don't know enough people (apart from my mum & a few family friends) to be able to not drive. And I can't catch public transport because I get so dizzy & may pass out. (Though I do when I have to.)

    @Annie: Thanks! How are you? =)

  6. @Chris 78: Thanks! =D It sure wasn't the best, but things can't get much worse. *shrugs*