Comments | spade_grrl: a question for those who have m.e

spade_grrl

a question for those who have m.e

Sep 23, 2005 10:57

what is your definition of 0% ??

Comments 17

rock_a_rhyme September 23 2005, 08:46:37 UTC

i was 0% for a long time. i couldnt move at all, i couldnt speak, i was tubefed, i drifted in and out of conciousness, i couldnt understand what people were saying most of the time, i couldnt read, i couldnt recognise colours, i couldnt recognise people, i couldnt sit up, i couldnt have people in the same room as me for longer than a couple of minutes, i couldnt have any stimulating activity whatsoever.

twos_company September 24 2005, 06:16:01 UTC

V interesting question (& replies ( ... )

spiritofphoenix September 24 2005, 08:31:22 UTC

Thankfully I've never been that low, but I would agree with what the others have said. I think the scale is open to wide interpretation- some people have varying cognitive and physical abilities and some people's abilities fluctuate wildly. I think it also depends on your illness perception/experience as well... when your symptoms are different to other people's can you really compare yourself? But then, I'm always paraniod that I'm not at the % I think because I don't know what other people at the same level can/can't do!

C xxx

twos_company September 25 2005, 05:49:45 UTC

Steph, I hope u don't think this is cheeky, & pls do say if you'd rather me not do this, but I was wondering if you'd mind if I put a link in my journal, leading 2 this journal entry of yours? As I think I said b4, I just think it's really important topic & I'm interested in peoples opinions about it. Not that I'm v sure that adding a link in my journal will bring that many more ppl 2 your journal, cos I think u already have more readers than me (altho 2 b honest, I was very pleasantly surprised at the number of ppl who left a comment in my latest journal entry!), but I thought it might b worth a try. 'Tis totally up2 u tho. PLS say if you'd prefer me not 2 add a link - 4 whatever reason.

Out of interest, approx what % would u put yourself at? (if u don't mind saying!).

Hope 2day's better 4 u & you're not feeling so down.

*Gentle hugs*

spade_grrl September 25 2005, 07:00:16 UTC

no i dont mind atall, infact i would love more feedback so if anyone else would like to link to this question or ask the same question and leave a link to your replys in these comments that would be great :)

i dont really actually know what % i am.. i guess around 10-20% alltho a lot of aspects of 20% i cannot do atall.. but i feel a bit like im being mean to people worse off then me by saying im 10% as i know some very ill people who would class themselves around there.

i guess theres a lot of confusion around the ability scale and it can be interpreted very widely and differently by different people.

*gentle hugs back* am feeling a little bit happier today thankoo.. hope your awap

*more gentle hugs*

steph xxx

ps thankyou soo much to everyone taking the time to answer :)

twos_company September 25 2005, 11:35:24 UTC

Thanx Steph :) I’ve just posted a new diary entry with the link 2 your journal. I’ve also added the long comment that I left u about this topic (if that makes sense!). Hopefully we'll both get some more replies!

I understand the difficulty in calculating what % u are - I have the same prob! That's why I'm so interested in hearing peoples opinions about this. So well done 4 bringing it up!

Glad ur feeling slightly "happier" 2day - hope it lasts :)

Sending lotsa love & healing thoughts ur way.

Jx

...(am off 2 post another reply to 1 of ur other entries, so watch out!)...

starmoon September 26 2005, 03:13:21 UTC

Hello, I came to you from Jess's journal. As Special Services team manager for AYME (SAMs and Children's Teams) I've seen a lot of cases and I think it's a hard thing to judge when someone actually is 0%. The thing is if someone says they are 0% there are always people worse than them so what are they, -10 ( ... )