*** LOG OPENED: Wed Mar 10 19:03:14 1999
---
Participants:
  disabled
  ChanServ (nanook@eskimo.com)
  suze
  Lily
  Lonewolf
  Kim^^
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<Lily> welcome all:) 
<Lonewolf> Hello everyone 
<Kim^^> :) 
<Lonewolf> Tonight's topic is Saying No, Energy and Pain 
<atrpilot> :) 
<Kim^^> no to energy and pain? 
<Lonewolf> To explain I want to say that fatigue is a 
    syptom that accompanies many disabilities 
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<Lonewolf> Over extending often accelerates our pain and 
    decreases our energy 
<Lonewolf> But it is hard to say no and not feel left 
    out 
<Lonewolf> 1. Can you name some instances where you should 
    have said no and didn't? 
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<Lonewolf> 1. Can you name some instances where you should 
    have said no and didn't? 
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<Lily> ! 
<Lonewolf> I will be supplying answers for Lorraine who 
    wishes to be known as France 
<Lonewolf> Lily 
<suze> ! 
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<Lily> family dinners, like at christmas, big extravaganzas 
<Lonewolf> yes at Christmas you were in a mess-I remember 
<Lonewolf> suze 
<suze> last week my car was in the shop and when repairs 
    were done, needed to pick it up, friend would help me, he 
    was running very late, i told him i'd meet him halfway, 
    so i walked, 
<suze> to meet him halfway, was very stupid 
<Lonewolf> but you didn't want to appear disabled? 
<Lonewolf> ? From France:Yes, but not just because I am 
    disabled. Yes my disability sometimes causing pain and 
<Lonewolf> fatigue but I think I was in situations a while 
    back where I was used 
<Lonewolf> for my car by two different people and should 
    have said no. I guess I 
<Lonewolf> felt obligated because these people would assist 
    me with mobility but 
<Lonewolf> then I realized it was reluctant and I realized 
    that I have scores of 
<Lonewolf> excellent long term friends who do things for 
    me, do not use me and 
<Lonewolf> still assist me with mobility so I dumped the 
    two us 
<suze> i felt so horribly dependent that i felt by walking 
    half way i was preserving my independence 
<Lonewolf> understand 
<Lonewolf> users and learned 
<Lonewolf> the word no 
<Lonewolf> sorry that was the end of france's answer 
<Lonewolf> cam? 
<Lonewolf> atr? 
<suze> ! 
<Kim^^> ! 
<Lonewolf> kark? 
<Lonewolf> suze 
<atrpilot> S T 
<camille3> i'm thinking 
<suze> i have to learn to say no to myself, stop myself 
    from doing stupid things 
<Lily> ! 
<Lonewolf> you hit a big ont there sue 
<Kark> yes lw? 
<Lonewolf> comments? 
<camille3> ! 
<Lonewolf> Kim 
<Kim^^> sorry i lost mine:( 
<Lonewolf> Lily 
<Lily> i tried pushing myself, only end up tired and 
    resentful 
<Lonewolf> Cam 
<Lily> now i rest when i need to 
<SilverW> :-) 
<camille3> have to learn to stop when its time to and not 
    keep working 
<Kim^^> ! 
<Kark> I say yes puching myself when I rather not or know 
    that resting would be better 
<Lonewolf> Kim 
<Kark> pushing I meant, typo 
<Lonewolf> understand 
<Kark> ! 
<Lonewolf> Kim? 
<Kim^^> life would be easier for all of us f we would 
    get accustomed to being interdepent don't have to be 
    totally independent 
<Lonewolf> explain lease 
<Lily> good point kim 
<Lonewolf> Kark 
<Kark> Like when my company asks me to do overtime and I 
    feel obligated to do so but 40 hrs are long enough for 
    me 
<Kim^^> interdependent is can ask for help but still 
    independent - it seems everyone of yall are as hardhead as 
    me 
<Lonewolf> lol true Kim 
<Kim^^> opps foorgiot to ! 
<Lonewolf> Karen is it mandatory overtime? 
<Lonewolf> its ok Kim I asked you to explain:) 
<Kim^^> ok:) 
<Lonewolf> My big boo boo is babysitting 
<Lonewolf> can't say no 
<Kark> no but they make you feel guilty and then when you 
    can't get all the work done by a deadline they say well 
    you have overtime as an option 
<atrpilot> I do good first half of day but pain gets 
    worse as day goes on , so have to watch it. 
<Lonewolf> I think the main heme here is changing our 
    mindset 
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<Lonewolf> IC Karen 
<Kark> but health is most important 
<Lonewolf> vpoe our question is 1. Can you name some 
    instances where you should have said no and didn't? 
<Lonewolf> Yes Karen and I wonder if we push to prove to 
    others we can or to ourslves 
<Lily> ! 
<Kark> Yes that too 
<Lonewolf> prove to ourselves I meant 
<Lonewolf> Lily 
<Lily> both, i think 
<Lonewolf> yes I think so too 
<Lily> is a matter of pride 
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<Lonewolf> we just all need to get to what Kim mentioned 
<Lily> ? 
<Kim^^> interdependent 
<Lonewolf> I feel like scum if I say no to babysitting 
<Lonewolf> Lily 
<Kim^^> ! 
<Lily> not be ashamed to ask for help? 
<Lonewolf> yes 
<Lonewolf> Kim 
<Kim^^> I DON'T EVER BABYSIT 
<Kim^^> oops 
<Lily> lol 
<Lonewolf> now Kim who is gonna raise that baby? 
<Kim^^> ! 
<Lonewolf> go on Kim 
<Kim^^> hey 
<Lonewolf> yes 
<Kim^^> i'm gonna raise it but i'm gonna call you to 
    babysit a lot! 
<Lonewolf> lol 
<Lily> lol 
<Lonewolf> anyone else have a comment 
<Lonewolf> 2. Do you have less energy or pain or both 
    when you over extend your capabilities? 
<Kim^^> ! 
<Lonewolf> Kim 
<Kim^^> I HAVE SEIZURES OR BRAIN OVERLOAD 
<Kim^^> caps fixed 
<Lonewolf> yes I know someone else that is happening to 
<vpoe> ! 
<Lonewolf> vpoe 
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<Lonewolf> anny our current question is 2. Do you have 
    less energy or pain or both when you over extend your 
    capabilities? 
<Lonewolf> vpoe? 
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<vpoe> yes, I do loose all energy and have muscle spasams 
<Lonewolf> what's your disability vpoe? 
<camille3> ! 
<vpoe> COPD 
<Lonewolf> yes my husband has that 
<Lonewolf> cam 
<camille3> i seem to have less energy if i just sit and 
    do nothing 
<Lonewolf> some say that but don't you think it depends on 
    what the disability is? 
<camille3> yes thats true 
<Lonewolf> disease versus ..... 
<Lonewolf> cam you work at home right? 
<camille3> yes at hoome 
<Lily> ! 
<Lonewolf> how do you pace yourself? 
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<camille3> thats my problem i don't i work till i get it 
    done sometimes 
<Lonewolf> 2. Do you have less energy or pain or both 
    when you over extend your capabilities? 
<Lonewolf> IC 
<Lily> i thnk u hav to get a bal., stretch yourself, but 
    then know when youve had enough 
<Lily> oops, sorry, hit enter 
<camille3> lately I have been stopping earlier 
<Lonewolf> its ok 
<Lonewolf> I do what cam does 
<SilverW> ! 
<Lonewolf> then get to a point where I cannot rest due to 
    pain 
<Lonewolf> Silver 
<SilverW> knowing when to rest is important 
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<SilverW> I'm suppose to be at church tonight 
<SilverW> bu t emailed pasted 
<Lonewolf> pardon? 
<SilverW> paster and said I'm staying hime 
<Lonewolf> oh IC 
<SilverW> I'm like a assistant, without title 
<Lonewolf> I'm sure it was hard to say no to that 
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<SilverW> cleaned appartment all day, I was tired 
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<Kark> ! 
<Lonewolf> thank you daniel 
<Lonewolf> Kark 
<Kim^^> !! 
<Lonewolf> Kark? 
<Kark> My New Years resolution was to clean and get 
    organized and I have had help but it is still taking all 
    my energy 
<Lonewolf> maybe you expected too much of yourself 
<Kim^^> I have to go jalena has been taken to hosp for 
    miscarriage sorry i'll read logs:: please pray for my baby 
    and hers 
<Lonewolf> Kim 
<Kim^^> sorry 
<Kark> after workI am too tired and weekends I can only 
    doo so much 
<Lonewolf> ohKim sorry 
<Lily> o no, kim 
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<Lonewolf> I think its hard to learn to pce 
<Lonewolf> pace 
<Lonewolf> It sounds like Cam has done fairly ell with it 
<Kark> It sometimes gets me down 
<Lonewolf> me too Karen 
<Lily> me 3 
<SilverW> 4 
<camille3> ! 
<vpoe> ditto 
<Lonewolf> France ?Sometimes, but I feel by over extending, 
    it helps me and anyone with a disability 
<Lonewolf> to be more active. The more fun, work and 
    things we do,the less 
<Lonewolf> medical problems like bad circulation, the less 
    internal organ 
<Lonewolf> problems we will have. Because I am so active, 
    I have no internal or 
<Lonewolf> circulatory problems, my problems are limited to 
    my 
<Lonewolf> neurological/mobility condition. I think many 
    people with 
<Lonewolf> disabilities use the word can't too much and are 
    not willing to 
<Lonewolf> over extend and we should. It is a ma 
<Lily> ? 
<Lonewolf> . It is a matter of health!France 
<Lonewolf> cam 
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<Lonewolf> cam? 
<camille3> imy hubby has made me stop at a a certain time 
    now so I won't get burnt out on my work 
<Lonewolf> good idea 
<Lonewolf> Lily 
<Lily-st> it answered 
<Lonewolf> ok 
<Lonewolf> Kim? 
<anny1> ! 
<Lonewolf> anny 
<Kim^^> just waiting for ride 
<camille3> ! 
<Lonewolf> ok 
<Lonewolf> go on anny 
<anny1> i have learned over aperiod of time to take things 
    slow and steady 
<anny1> or i poop out and never catch up 
<Lonewolf> isn't it difficult though? 
<Lonewolf> cam 
<camille3> you have to keep active - if you don't use it 
    u lose it 
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<Lonewolf> OK France and I have been arguing over this all 
    day 
<anny1> not as diff as having to stay home from work for 
    a day or two because too tired 
<Lonewolf> some disease states increase activity with more 
    physical activity 
<Lonewolf> true anny 
<Lonewolf> such as mine 
<Lily-st> ! 
<Lonewolf> or vpoes 
<Lonewolf> Lily 
<camille3> ! 
<Lily-st> i agree, hard to generalize 
<Lonewolf> cam 
<camille3> I think in my case yes 
<Lonewolf> I can see that 
<Lily-st> and mine, stamina not there 
<Lonewolf> How many of you have fatigue as a symptom of 
    your disease? 
<Lily-st> i do 
<vpoe> me too 
<Lonewolf> me too 
<Lonewolf> Kim too 
<camille3> me too but i fight it 
<Kark> me 
<Lily-st> ! 
<Lonewolf> during a flare activity increases my inflammation 
    rates 
<Lonewolf> lil 
<Lily-st> if i dont rest, im afraid of another stroke 
<Lonewolf> very good point 
<Lonewolf> daniel what about you? 
<Lonewolf> and you silver 
<Lonewolf> anny? 
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<SilverW> overactivity causes fatigue 
<Lonewolf> 3. Would saying no effect any of your 
    relationships? 
<camille3> ! 
<Lily-st> ! 
<Lily-st> lol 
<Lonewolf> cam 
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<Mooooooof> sorry judi, im in and out. problems here 
<camille3> as i get older i find i can't do as much as 
    befor 
<anny1> i want to clarify the steady part of my previous 
    statement, that is very imp. to keep going 
<Lonewolf> its ok daniel 
<Lonewolf> true cam 
<Lonewolf> anny explain 
<SilverW> dido cam 
<anny1> the more i sit the more i want to sit and rest 
    so if i pace self it is best 
<Lonewolf> IC 
<Kark> yes too both cam and anny 
<Lonewolf> Lil 
<Lily-st> yes, with my family and friends, but maybe thats 
    my guilty feelings, but im afraid of their disapproval 
<Lonewolf> same here 
<Lonewolf> may I share something? 
<vpoe> me also 
<camille3> same here 
<Kark> go for it lw 
<Lonewolf> I said no to babysitting to my ex daughter in 
    law because we weren't feeling well-se's been mad ever 
    since-intimated I didn't love my grandkids 
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<Lonewolf> France: Not since I got rid of the two jerks 
    in my life 
<Lily-st> ! 
<Lonewolf> lily 
<Lily-st> that emotional blackmail 
<camille3> ? 
<Lonewolf> yes she continued her mad spree and ended up 
    taking my son back to court for more child support 
<Lonewolf> cam 
<camille3> what was the last quation 
<camille3> qustion 
<Lonewolf> 3. Would saying no effect any of your 
    relationships? 
<Lonewolf> anyone else 
<Lily-st> ! 
<Lonewolf> lil 
<Lily-st> my dis. friends are much more understanding, 
    expect less 
<Lonewolf> true 
<Lonewolf> 4. Do you find it difficult to say no and why? 
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<Lonewolf> my answer is pride 
<Lily-st> ! 
<Lonewolf> lil 
<Lily-st> yes, i agree......... 
<Lonewolf> fear I will disappoint someone 
<vpoe> ! 
<Lily-st> ! 
<anny1> ! 
<Lonewolf> france4. Do you find it difficult to say no and 
    why?At times, because I like to be nice 
<Lonewolf> vpoe 
<Lonewolf> vpoe? 
<vpoe> guilt, because I think that I myself are still in 
    denial of my limitations 
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<Lonewolf> good one vpoe 
<gimp_el> HAiL. 
<Lonewolf> lil 
<Lily-st> but many times now, i say no, and it ok, the 
    world goes on, and a good friend will understand 
<Lonewolf> true 
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<gimp_el> Wtf? 
<gimp_el> use of colors? 
<Lonewolf> anny 
<gimp_el> Lame. 
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<anny1> my disability has been form birth so there were 
    low expectations of my physical preformance, i am 
    comfortable with not doing alot but find that ablebodied 
    have more of a problem with it than i do 
<Lonewolf> understand 
<Kark> mee too anny 
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<anny1> with my low preformance that is 
<Lonewolf> less our questio is 4. Do you find it difficult 
    to say no and why? 
<Lonewolf> 5. What are some ways to tactfully say no? 
<Lily-st> ! 
<Lonewolf> lil 
<Lily-st> i just say, i'm sorry, nut i cant 
<Lily-st> but 
<lessizmor> hi all ... ya 'can't' say no to things that u 
    know are a 'must'.... i try to be responsible with my 
    'no's' ;] 
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<Lonewolf> go on lil 
<Lonewolf> france ?If it is something that I cannot do due 
    to my disability 
<Lonewolf> like anything that involves much carrying, 
    anything with motor skills 
<Lonewolf> etc, I tell them I am unable to do it. If it 
    is something I can do 
<Lonewolf> but increases my pain or exertion, I do it 
    anyway because it is good 
<Lonewolf> for the health and body, and keeps little France 
    active-:) 
<Lily-st> thats it, i just say soory, i cant 
<atrpilot> sorry phone! 
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<Lonewolf> ok my prob is 6 grandkids what u do for 1 you 
    have to do for all 
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<lessizmor> geeeeezzzzze.... lost what i was sayinng ;].... 
<Lonewolf> so how can I say no? 
<Lily-st> ! 
<Kark> thats tough Judy 
<Lonewolf> lil 
<Lily-st> N O 
<Lonewolf> yea it is 
<Lily-st> :) 
<Lonewolf> lol 
<Lily-st> is only way 
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<Lily-st> ! 
<Lonewolf> lil 
<Lily-st> volunteering past noon in library 
<Lonewolf> good 
<Lily-st> now, i stop at 12 
<Lonewolf> ok 
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<Lonewolf> mine of course is babysitting 
<Lonewolf> anyone else? 
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<Lily-st> ! 
<Lonewolf> lil 
<Lily-st> i think ppl are saying, NO :)) 
<Lily-st> lol 
<Lonewolf> france-Technically just walking distances or 
    carrying anything 
<Lonewolf> would do that but I ignore pain as I like to 
    have fun. If any of you 
<Lonewolf> saw my posting on pain management, I said that 
    on bad days I will 
<Lonewolf> sing karaoke singing the loudest Alanis Morissette 
    songs I can think 
<Lonewolf> of. I also work and keep dancing and active, it 
    is aerobic and great 
<Lonewolf> exercise despite pain and exertion.This keeps 
    little France healthy 
<lessizmor> i'm learning to say no to myself re; doing 
    things that r keeping me from 'adapting' to my 'seat' 
<Lily-st> i think everyone tired 
<Lonewolf> seat? 
<Lily-st> brb 
<Lonewolf> you mean chair? 
<Lonewolf> ell its late so thanks all for cominf 
<lessizmor> custom support 'seat' 
<Lonewolf> its been a good meeting 
<Lonewolf> IC 
<lessizmor> for chr... 
*** LOG CLOSED: Wed Mar 10 20:07:41 1999