In response to jorune....
....posting a link to
http://www.notdoneliving.net/foothold/openletter/
Thank you for your offer of help, no doubt I'll take you on on it when needed.
I was going to write this as a reply to your comment, but I decided to make it more public - just because it does express something of my general attitude towards the being chronically ill.
I read the open letter, and I agree in principle with most of the content, but I have to say that the spirit, or the mood, of it leaves me uncomfortable.
No I'm not done living yet, and yes, I do need a lot of care and I do also need people to understand where I'm at and that both me and mavnn are on a learning curve on how to manage this beastie.
However I found most people around us to be incredibly willing and humble in their attitude, possibly with the execption of some very dear but occasionally a tad overprotective friends, asking me/us what to do and how, then sticking to instructions to the letter when told.
On the other hand what might come across as over protective on one side is just yet another expression of their love and care on another - to me it would seem incredibly selfish to direct something as the open letter, which is essentially angry and longsuffering in attitude, at them because of their possibly misplaced concern/attempt to help, no matter how irritating this could be.
Yes I need help, I need care, I need the people who do offer care to have a correct understanding of my condition (and they have been ever so pro-active and humble in seeking such understanding), but I need my friend's love and openness even more, and exactly because I'm not done living yet I need those relationship to stay on a egalitarian level: being chronically ill doesn't excuse or justify becoming self centered and expecting the world to revolve around our needs, and that's the main impression I got from the open letter: it feels like it's written with the assumption that the world around any Fibro/CFS/ME sufferer is made of arrogant gits who do not really want to know and understand, and that's an assumption that is both wrong and unhelpful -
What would my mind life be like if I gave in to such a mindset?
And how exactly would that help?
http://www.notdoneliving.net/foothold/openletter/
Thank you for your offer of help, no doubt I'll take you on on it when needed.
I was going to write this as a reply to your comment, but I decided to make it more public - just because it does express something of my general attitude towards the being chronically ill.
I read the open letter, and I agree in principle with most of the content, but I have to say that the spirit, or the mood, of it leaves me uncomfortable.
No I'm not done living yet, and yes, I do need a lot of care and I do also need people to understand where I'm at and that both me and mavnn are on a learning curve on how to manage this beastie.
However I found most people around us to be incredibly willing and humble in their attitude, possibly with the execption of some very dear but occasionally a tad overprotective friends, asking me/us what to do and how, then sticking to instructions to the letter when told.
On the other hand what might come across as over protective on one side is just yet another expression of their love and care on another - to me it would seem incredibly selfish to direct something as the open letter, which is essentially angry and longsuffering in attitude, at them because of their possibly misplaced concern/attempt to help, no matter how irritating this could be.
Yes I need help, I need care, I need the people who do offer care to have a correct understanding of my condition (and they have been ever so pro-active and humble in seeking such understanding), but I need my friend's love and openness even more, and exactly because I'm not done living yet I need those relationship to stay on a egalitarian level: being chronically ill doesn't excuse or justify becoming self centered and expecting the world to revolve around our needs, and that's the main impression I got from the open letter: it feels like it's written with the assumption that the world around any Fibro/CFS/ME sufferer is made of arrogant gits who do not really want to know and understand, and that's an assumption that is both wrong and unhelpful -
What would my mind life be like if I gave in to such a mindset?
And how exactly would that help?