Created by and for people with physical disabilities.

Saying No, Energy and Pain

Mar 10, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  ChanServ ([email protected])
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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^^: 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^^: 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
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...