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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
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...
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