.....(sorry this comment is so long - I think it's an important topic u raised here Steph. Also, I guess I just had a lot 2 say - as usual!).....
I have 2 admit that I don’t really agree with the Ability Scale, as I feel its open 2 far too much "user interpretation" (ie. what 1 person interprets as 0%, another person will think is 5 -10%, etc), but I guess its good as a general guide.
I was 0% for about 12yrs.....I was tube-fed & watered (couldnt evn swallow saliva), paralysed from neck down (couldnt move a thing, or open my eyes); unable 2 speak at all; slept for upto 23.5hrs a day & was pretty much comatose, not knowing or understanding what was going on around me; no memory (couldnt remember family/friends or what anything was, & I’d forget everything that happened within 15 - 30mins. In the few mins a day that I was semi-conscious [& not comatose], I’d scream if I saw my cat cos I thought he was a monster!); couldn't read/write (words looked like "chinese"); needed earplugs/eyemask/black-out curtains 24/7 & would pass out if any noise was made/light was on; couldn't stand anyone near/touch me; couldn't hold/move own head or be propped up (I would pass out if head was put on a pillow); had "fit-like episodes" that lasted 4 upto 8hrs at a time where I’d pass out, shake, scream, & whole body would go in2 spasm; no music/tv/talking tolerated; horrific pain in whole body (am now on diamorphine pain-killer pump); frequent violent vomiting; couldn't care 4 myself at all; severe Adrenal Insufficiency (Addisons Disease); v low oestragen levels (I went through like an early menopause); severe Osteoporosis (prob caused by a combination of the lack of oestragen, low vitamin D & being bedbound); frequent severe infections.........Oh, I could go on (& on!), but I won’t, dont worry!
Basically it was/is a living hell (as u know yourself).
As 4 now? Well, it's difficult, cos altho I’m obviously not as ill as I was b4, I do actually still fit the AYME description for being 0%, & I still suffer from pretty much everything I described above, only 2 a lesser degree. I’m still totally bedbound; tubefed; can’t speak; poor memory; paralysed from the waist-down (it used 2 be from the neck); can’t see any1 (except my nurses); can’t care 4 myself at all; can’t b propped up (still pass out); in terrible pain; permanent nausea/vomiting etc.... Basically, I still suffer with literally everything they list on the AYME scale as being 0% (& about a million other symptoms too!). BUT, I’m better than I was at my own personal worst - I’m mostly conscious now (except when I’m extra ill, when I go back 2 drifting in & out of consciousness); I can open my eyes; communicate (via made-up sign-language); move my arms abit; listen 2 a TINY bit of music or V quiet TV (with no picture on); see a family member for 2 or 3 mins (altho it makes me extra ill)....So I never really know if I should say 2 people that I’m still 0% (as described on the AYME scale), or if I should say I’m now 1 - 3% or something, as I’m better than I was at my worst. I knw I’m definitely not 5% tho. Its tricky! Any thoughts, anyone?
The only thing about me that possibly couldn't be described as "true" 0% now - & is my main improvement - is that as from 2yrs ago, I can now get on the 'net & write emails. B4 that, I was totally alone & isolated for 12yrs. I still can’t use a laptop or type on a keyboard tho - I have a little Pocket PC (PDA) that enables me 2 get online (I actually bought a laptop recently, 2 see how I’d get on, but I can’t use it!). My PDA is great, cos it has predictive text (bit like on a mobile phone), so I only have 2 enter the 1st 2 or 3 letters of each word & then it's finished off 4 me, which saves me energy & means I can write much more (rather like now!).
So anyway, that's my own personal definition of being "true" 0%....but it doesn’t mean I’m right, obviously!
.....(sorry this comment is so long - I think it's an important topic u raised here Steph. Also, I guess I just had a lot 2 say - as usual!).....
I have 2 admit that I don’t really agree with the Ability Scale, as I feel its open 2 far too much "user interpretation" (ie. what 1 person interprets as 0%, another person will think is 5 -10%, etc), but I guess its good as a general guide.
I was 0% for about 12yrs.....I was tube-fed & watered (couldnt evn swallow saliva), paralysed from neck down (couldnt move a thing, or open my eyes); unable 2 speak at all; slept for upto 23.5hrs a day & was pretty much comatose, not knowing or understanding what was going on around me; no memory (couldnt remember family/friends or what anything was, & I’d forget everything that happened within 15 - 30mins. In the few mins a day that I was semi-conscious [& not comatose], I’d scream if I saw my cat cos I thought he was a monster!); couldn't read/write (words looked like "chinese"); needed earplugs/eyemask/black-out curtains 24/7 & would pass out if any noise was made/light was on; couldn't stand anyone near/touch me; couldn't hold/move own head or be propped up (I would pass out if head was put on a pillow); had "fit-like episodes" that lasted 4 upto 8hrs at a time where I’d pass out, shake, scream, & whole body would go in2 spasm; no music/tv/talking tolerated; horrific pain in whole body (am now on diamorphine pain-killer pump); frequent violent vomiting; couldn't care 4 myself at all; severe Adrenal Insufficiency (Addisons Disease); v low oestragen levels (I went through like an early menopause); severe Osteoporosis (prob caused by a combination of the lack of oestragen, low vitamin D & being bedbound); frequent severe infections.........Oh, I could go on (& on!), but I won’t, dont worry!
Basically it was/is a living hell (as u know yourself).
As 4 now? Well, it's difficult, cos altho I’m obviously not as ill as I was b4, I do actually still fit the AYME description for being 0%, & I still suffer from pretty much everything I described above, only 2 a lesser degree. I’m still totally bedbound; tubefed; can’t speak; poor memory; paralysed from the waist-down (it used 2 be from the neck); can’t see any1 (except my nurses); can’t care 4 myself at all; can’t b propped up (still pass out); in terrible pain; permanent nausea/vomiting etc.... Basically, I still suffer with literally everything they list on the AYME scale as being 0% (& about a million other symptoms too!). BUT, I’m better than I was at my own personal worst - I’m mostly conscious now (except when I’m extra ill, when I go back 2 drifting in & out of consciousness); I can open my eyes; communicate (via made-up sign-language); move my arms abit; listen 2 a TINY bit of music or V quiet TV (with no picture on); see a family member for 2 or 3 mins (altho it makes me extra ill)....So I never really know if I should say 2 people that I’m still 0% (as described on the AYME scale), or if I should say I’m now 1 - 3% or something, as I’m better than I was at my worst. I knw I’m definitely not 5% tho. Its tricky! Any thoughts, anyone?
The only thing about me that possibly couldn't be described as "true" 0% now - & is my main improvement - is that as from 2yrs ago, I can now get on the 'net & write emails. B4 that, I was totally alone & isolated for 12yrs. I still can’t use a laptop or type on a keyboard tho - I have a little Pocket PC (PDA) that enables me 2 get online (I actually bought a laptop recently, 2 see how I’d get on, but I can’t use it!). My PDA is great, cos it has predictive text (bit like on a mobile phone), so I only have 2 enter the 1st 2 or 3 letters of each word & then it's finished off 4 me, which saves me energy & means I can write much more (rather like now!).
So anyway, that's my own personal definition of being "true" 0%....but it doesn’t mean I’m right, obviously!
Feedback?
xxx
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