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.)
http://chronic-fatigue-syndrome.suite101.com/article.cfm/basics_of_cfsme

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.

Finally:
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.