Wednesday, May 12, 2010

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.)

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.

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.


  1. I salute your courage, Alex. Thank you for this eloquent post.

  2. Alexa! I had no idea you were part of the Be Aware! Woo Hoo! I love your tweets. I knew the first time I saw one, Uh oh. She has CFIDS.

    Thanks for sharing. It does get old being told it is in our heads, doesn't it? Yup....

    Well, you should be proud of yourself. You chose to stand! You go girl!

    Hey...see you on twitter! he he

  3. Thanks! I was just trying to be coherent, it was 4am at the time... It's the first specific post I've done about May 12, my other ones are usually about study & illness or illness or finally leaving the house!! I think my first ever post was all about me. And M.E ... lol!! Thanks again for the comments, it means so much to me. =)

  4. Great post. I'm sorry you've been ill from such a young age. Good luck with your final year of high school, it must be hard but you're doing a wonderful job. Thanks for sharing more of your story!

  5. Thanks! I don't mind sharing my story, as long as it somehow helps get people talking or raises awareness about M.E. After a newspaper article, I was bullied, because people only read the headline, but it was worth it because of all the positive feedback I received.

    It .should. be my final year of high school (Year 12) but I'm doing it over 3 years. Last year I did German at school, this year I'm doing Maths by distance and next year I want to do Literature and a Humanities subject at school. Then I can graduate! =D

    How are you?

  6. Please ignore any comments like "No one needs to suffer with ME/CFS or Fibromyalgia, I have a cure: *insert website*" if I don't get to in time.

    The previous comment was deleted for this reason.

    The last thing we need are money making vultures preying on severely ill and disabled, vulnerable people.