* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Sunday, December 11, 2011

Survey Results for 'What's in a name?'

I'd like to say a big thank you to everyone who filled out the survey.

What's in a name?   http://www.zoomerang.com/Survey/WEB22DS4Y6CYFQ

If you didn't fill it out it's not too late to do so.  I've decided to keep it open for a year (it expires on 11/12/2012) as I think it will take time and energy for it to reach the broader M.E. community.

It can be found here.  Please take the time to fill it out and pass it on.

The results (after one month):

1. Which name do you prefer for me/cfs?

Myalgic Encephalomyelitis, M.E.                                                           73%
Chronic Fatigue Syndrome, C.F.S.                                                         0%
Chronic Fatigue and Immune Dysfunction Syndrome, C.F.I.D.S,           8%
Post Viral Fatigue Syndrome, P.V.F.S.                                                   0%
Post-Exertional Neuroimmune Exhaustion, P.E.N.E.                              4%
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, M.E./C.F.S.      8%      
Other,                                                                                                      4%
No Opinion,                                                                                             4%

So there we have it, most people who filled out the survey want this illness to be known as M.E. and none of us want it to be known as just C.F.S.

2. A few of the other Name Suggestions.

- totally broken syndrome!
- TPTP, Too pooped to pop disease.
- Neurological polysymptomatic disaster.


3. Thanks to everyone who trusted me with your contact details for any future M.E. related surveys, I promise not to spam you.  (I don't actually know how to spam, so really you are safe.)

4. Comments.

There were so many very poignant comments from people who suffer from or know someone who suffers from M.E. that it makes me more determined to try and make a difference.  Thank you for taking the time and energy to comment.

A few of the comments,


- I would like to eliminate the word fatigue from the name


- M.E. is the only name that adequately, respectfully acknowledges the severity and physiological reality of this severe multi-system, neuroimmune disease.  Get rid of 'Chronic Fatigue Syndrome' completely.  It is offensive and its trivialising of this disease is damaging us terribly.


- If we can't get doctors to change from calling it CFS then we have an uphill battle. The press and the general public will use the name that doctors use not what the sufferers and carers call it.  Doctors have a high credibility in society, while the sufferers are trivialised by those who misperceive what the condition involves.


- my friend was devastated by ME and he wasn't one of the worst ones











Friday, December 2, 2011

Where I admit to being thoroughly spoilt



Every morning I get breakfast in bed. 

Never mind that this is because my body doesn’t work and I look and feel like a hung-over junkie in the morning, I still feel decadent when my hot breakfast is brought in.

I am lucky and very grateful to have so much support from my family.

***

This morning it was Large Dad’s turn to bring me breakfast.

Me: Hmm that looks great.

Large Dad: I hope so, I think it turned out okay.  

He wanders over to offer his finger to my fresh water turtle.  Dexter, named after the tv serial killer, snaps with intent at the proffered finger. Something is not right.

Me: Are your pants on inside out?

Large Dad looks down, he is wearing short board shorts (evidence that Mum didn’t see him get dressed this morning) and they look a bit funny.  I think I can see a frayed seam.

Large Dad: no I don’t think so.

He turns towards me.

Me: Umm, I can see your undies. (giggling)

There is a large vertical rip, down the side of his outer thigh from the bottom hem to the top hem. 

I can see a lot of hairy leg and at the very top, faded blue rio undies. 

Large Dad: OOps.

He looks serious for a moment considering the ripped shorts.

Large Dad: I guess I’ll have to throw these out?

Me: Yes, definitely, don’t even think about keeping them.  (sheesh)

It reminds me of the time my physics teacher split his pants and tried to staple them back together. I start to giggle harder. 

Then something about the way Large Dad is standing makes me suspicious, 

Me: Have you been anywhere this morning?

Large Dad: No, not really, only Bunnings.

***



NB: Bunnings is a really really big hardware store.