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Few will have the greatness to bend history itself; but each of us can work to change a small portion of events, and in the total; of all those acts will be written the history of this generation. - Robert F Kennedy
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WOW Thats my illness too
Its being liek that this weekend... DAMN BFUBS!!!!!
I figure if people keep changing the name, well I may as well make my own name for it.
So there you go Kell we both have: BFUBS - sounds great doesn't it!
So when people ask what's wrong with you - you have just the answer, you can either use the acronym or the real term and just say that, "Chezza said!", coz they will listen then *wink*
I didn't mention it to upset you. As I also mentioned in email that the 'name game' really upsets me, too. As I explained, I didn't want to mention this if you do not have such power in blogging world. (People look up to you and follow your advice and suggestions. And my understanding is that name is very important for us to find cure and help.)
I never ever forget that you are severer sufferer and that is the reason why you can understand how I am feeling and struggling everyday life...
I read up on information and other sufferer's opinions in order to find help for myself. At this point, my opinion is that they will not find cure for ME/CFS if they did not agree with name...
If you are interested in, this is the post I found out about difference between CFS/ME and ME/CFS. And this is some examples the reason why specialists are arguing on name. The authors are not medical professionals, but their posts are referenced.
Please understand that I wasn't having a go at you. (I am feeling very bad about mentioning it to you...)
I am desperate. I do not want to struggle rest of my life alone and invisible. That is the reason why small things can be very important to be mentioned sometimes. And I know you understand.
In a mean time, I agree with BFUBS is a damn good name for it.
Lots of love
Rachel
I know you were not having a go at me, and likewise I am not and would not be having a go at you.
If the name has been changed then yes I needed to know. I am just so sick of the semantics of the whole name situation. Yes there maybe a very valid reason that it is to be called ME/CFS instead of CFS/ME, but I know you will agree with me - it seems on the surface so bloody ridiculous and even more ridiculous to an outsider!
So just letting off a bit of steam and also as with everything/everyone sometimes we all take ourselves way too seriously at times and it doesn't hurt to poke a bit of fun at the situation.
I am also well aware that our illness is serious, I know it all too well and that is why I feel the need to take a mental rest from it if I can, and just have fun with a bit of sarcasm/satire, dark humour, stupidity or whatever you may like to call it.
Ummm not sure about the power in the blogging world though - I may have to disagree with you on that point, but I will thank you for the compliment as I know that is how you meant it :-)
So Rachel I apoligise for making you feel bad, but that was never my intention.
Love you heaps,
Chezza <:-)
XXXX OOOO
I apologise to you for taking things out of context. It is hard to explain my frustration, but I know you understand it completely. I agree that laugh is very important for our lives. And I also know you understand that sometimes it is just impossible to laugh at anything.
I will not take advantage of your understanding and I thank you for your understanding very much. It is really helping me to hang in there.
And yes, I meant it as compliment. You motivate and inspire people. And that is amazing. You should proud of yourself.
Once again, I am sorry. And thank you for being my friend.
Love
Rachel
Love you heaps,
Chezza <:-)