New things!

New things!

Doona, doona cover and more:

Close up of the pattern.

My doona, doona cover,
matching pillow case & teal runner.

 

Yesterday I went out and got a new doona cover, it's navy blue/royal blue, with an aqua stripe surrounding the patterned part of it. I got a new doona to go with it, it's goosedown, but I think it's hypoallergernic. I'm prone to allergies, and mine have been flaring up lately, even though it's winter. It's meant to be a super warm doona, and I guess I'll find out if that's true tonight! Despite the fact I have a single bed, I got a double bed doona and doona cover, so I'll be extra warm, and it'll fit properly/cover more of the bed. Single bed doonas have never fit properly, in my experience!

  

This is the teal blanket/runner, on top of my old doona.

I got a runner to go on top of the doona, as decoration, because it actually brings out the different blues, etc. in my doona cover. It's hard to tell with iPhone pictures, but it's a teal colour, and it's silky/shiny. It's also something extra to keep me warm!

'Skins' series 4.

New DVDs!

I went to JB Hi-Fi afterwards, because I wanted to see if they had the most recent series of 'Skins', series 4. (It's on SBS at the moment, but I watched it online, as it airs a lot earlier in Britain. I saw the series finale back in March!) They did, which is great, because now I don't have to record it on the Foxtel iQ anymore. I can just lie in bed with my laptop and watch it!

I also picked up a DVD for mum, it's called 'The Hunger', and it's a vampire film with David Bowie. An old one, because Mum's been looking for a copy for ages. I can't wait to see it!

I had a quick look to see if there were any singles from my favourite bands, but no luck. I've yet to find a single besides 'Mr. Brightside' in any CD store!

The life of a spoonie: where to put all those medications?!

Already full with meds!

A month or so ago, (I think a few days before my reunion) I went into Sportsgirl, and had a look at their cosmetic bags. I bought one, not for make up or nail polish, but for my medications! It holds most of them, but I may need a larger one!

  

Smiggle: matching, scented stationery fixes everything!

I tweeted about going to Smiggle before my haircut last week. I went partially because I love to look at what's in the store, but also because I had a rewards card to redeem. Well, here's what I bought:

6 fruit scented highlighters

3 fineliners with ink that doesn't
seep through: aqua, pink & black

I bought a pencil case, too. It's got two outside sections, one with mesh that closes with a zip, and the other fabric that also closes with a zip. The middle is opened with a zip, and it expands so it can hold my calculator on one side, (it's divided internally by a thin mesh/net zip section) and the other side can hold my scented pens, etc.

The internal compartments are ideal for holding my medications for school next year; it's a lot more practical than carry around lots of pill containers, and some people are odd about others needing to take medication. I have no idea why! It's subtle, anyway.

I use the external mesh zip section for my ruler and fineliners, and the external fabric zip section for my pacers, pens, liquid paper pens and eraser.

Fabric zip section.

Mesh zip section

And finally:

There's one thing I can't live without: my hair straightener! Since I got my hair cut short last year, it's no longer an option to tie it up in a bun when it's wet, and leave it there if I can't be bothered drying and straightening it. I can't even put it in a ponytail when it's dry; it's too short! So I'm addicted to my hair straightener. Even if I look awful, haven't slept and feel like a zombie, at least my hair isn't a wreck!

I just wish it wasn't so tiring. I have to wash it every second day, and use dry shampoo on my fringe in between. When it was longer, I could leave it until every third or fourth day, and in hospital, once it was washed, I could put it in a high bun, and leave it there until it next needed washing. That's why I'm going to start growing it again after school photos next year. (I want my hair to look it's best then, as our school photo goes up on a big screen at graduation.) I know this hairstyle suits me, but it will save me so much time and energy when I can just dry and straighten my fringe, and leave the rest of my hair up. I miss long hair!

My GHD hair straightener.

I hope you liked this edited post; it's not exactly a coherent theme, but there are a lot of pictures to break it up a little. Please let me know if you'd like to see more or less of something, or something new entirely! Alex. xoxo

Doctor's appointments & a long-kept secret

Doctor's appointments:
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.

Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.

Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.

One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.

A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.

If people don't like me as I am, tough.

Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.

Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.

Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!

Busy & stressed!

My past week:
On the 27/03 & 28/03 I had two hours of Maths tutoring each day to catch up; I'd missed the previous week's session because I went to see a movie with a friend, & it was my birthday that weekend. One of the worst ever. So it took me a while to recover from that. (In fact, I'm not sure I have recovered yet.)
On the 30/03 I had a dentist's appointment, which was exhausting & I also got my iPod fixed & looked at Sportsgirl.
Then on the 31/03 I had my first personal training session at the gym, which went well, but I was incredibly exhausted as my younger brother had a friend & the friend's younger brother at our place all day.
The next day (01/04) I had a hair cut/colour & it took a few hours, but it was nice to get out of the house & do something that didn't involve ME/CFS for once. Then I noticed a sale at Cotton On & the Bonds outlet, so I bought a loose top that matches my pajamas for $5 from Cotton On, a jacket & long sleeve t-shirt from the Bonds outlet. Then I was exhausted.
On Sunday (04/03) I went to the footy after an awful weekend, thanks to my father. I had a good time with my half-brother from Germany, his girlfriend & my family. (Excluding my father.) After the footy match we went to the Hilton to have a coffee & some snacks, then caught a taxi home.

My further exhaustion & feelings of being overwhelmed:
I got back at about 9.50pm last night, & had to shower & wash, dry, straighten my hair & do my Methods hw which I'd been too busy or wiped out to do all week. I've finally got all of week 1 ready to send in, & all of week 2 except for 1 question. Just 5 more weeks of work to be completed by the 11/04 & I'm set. Then I have a SAC the first week of term, but I'm allowed to take rest breaks, etc. plus my mum is supervising me. So that should quell some of my nerves/panic attacks/anxiety about exams/tests/SACs. I hope.

Sleep: (or lack thereof)
It's 4am & I haven't slept yet. My body is keeping me awake, despite the fact I've taken my meds, because it knows I have tutoring at 1pm, & my body thinks I'll oversleep. It's stupid. I need sleep for tutoring, so my body ensures I don't sleep before tutoring. It's torture & a waste of my valuable meds! I'm going to go insane from lack of sleep. I either get to sleep by 4am & wake every 10mins or get to sleep by 8am & wake every 30mins. Both are exhausting, both cannot be classified as sleep, & no one can help me. I'm on my own here. I've tried everything & nothing helps. Exercise seems to make it worse, stress obviously does & I'm stressed out of my mind.

So busy & so desperate to sleep:
I need to get to sleep!!! My half-brother from Germany & his girlfriend are coming over after tutoring for an early dinner & also so they can tell us about their trip through central Australia. I must study, I must pass, I must get a good mark, & I must return to school next year. The isolation is awful & so is being stuck at home. I just want the energy & ability to escape for a few days. I'm not coping anymore.

Expect another post soon, unless I get too sick to use my laptop again!