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#468549 - 04/29/12 06:34 PM Working - Whilst Coping With Chronic Illness
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8655
Loc: Brittany, France (since Nov 08...
http://workingwithchronicillness.com/2011/10/talking-about-chronic-illness/

Living with chronic illness means that life’s challenges become - even more challenging.

(snip...) ""First, most illness symptoms are invisible. No one knows what your symptom/health is today/ in this moment– unless you tell them. And even where some of effects are visible, that doesn’t mean that others understand how this impacts YOU, unless you tell them." (more...)

cat

Fell over this earlier today and thought, Hmmmmm. Seems apt - KA will enjoy the discussion -
_________________________
MollyC1i - Riding OutAS

Top
#468557 - 04/29/12 07:53 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
just like with the article about communicating with our doctors, it takes two to communicate.

and i can tell you, most people really can't relate, even after things are explained to them.

i seem to get more understanding when:

1. i just quietly stand in the back of the room or go out and find a flat chair and drag it into the room. actions seem to speak louder than words. when they see i have difficulty sitting, it seems to make more of a statement than when i try to tell them.

2. they happen to see me in a flare, see the pain in my face.

3. someone else has some back pain. then i'll hear "if this is how you feel much of the time, i'm truly sorry. i had no idea. i don't think i could manage if i felt that bad so much of the time." i do think even when people try to be empathetic, sharing a common experience is often the only way for others to truly get it.

so while i do think communication is important, to a point, most people are just not interested in talking about health issues. just seems to be the way our society is wired. so i try not to talk to too many people about it too much.

mostly though, people just want to see you carry your own weight. no one wants to see someone who can't, because then the burden falls on someone else's shoulders, and with everyone overworked, no one will be understanding of that.
_________________________


sue

USpA
Humira (no more methylpred or Aleve?)
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

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#468622 - 04/30/12 04:30 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
elmerfudd Offline
Fourth_Degree_AS_Kicker

Registered: 09/11/11
Posts: 329
Loc: north central indiana
The place I worked is now making you work 10 hrs a day and a 30 minute lunch. Four days a week. They also made us sign a " condition of employment " contract saying failure to work overtime is reason for dismissal. They also can make you work your so called days off, or get fired.
Thats why I had to go....

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#468624 - 04/30/12 05:03 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8655
Loc: Brittany, France (since Nov 08...
Employers cannot do that in Europe. Am appalled. Know that when we lived in Bxls, many my husband's colleagues were Americans, there were many problems. Never forget one guy returning from a holiday to find his office locked out against him...phew. But, they had chosen the wrong national, as he was a European - with a European contract clause! He took em to the cleaners... We cheered. So disliked that company. Nasty.

One has to laugh - don't know what these guys would do in Europe, especially in France: two hour lunch breaks and knock off at 5.30 p.m. - just gotta laugh. Afraid I'm glad I never did follow the opportunity I had (before the green card came in) to move to the USA. (Shows my age, what?)

Sorry that anyone has to follow that kind of life -

Take care -
_________________________
MollyC1i - Riding OutAS

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#468697 - 05/01/12 10:52 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
NewNormalCharity Offline
Third_Degree_AS_Kicker

Registered: 03/30/11
Posts: 271
Loc: Blenheim ON CANADA
ok I have to say I Love the word "Whilst" ever since the latest Star Treck movie. ! :-)
_________________________
Diagnosed Fibromyalgia 2004
Diagnosed Ankylosing Spodylitis Sept 2011.
Vertigo Since October 21 2012
Humira June 2012
Spending Each day using it to the full to help people in my community have hope, the only hope that keeps me going despite pain and fatigue every day most of the day.

Top
#468715 - 05/02/12 11:52 AM Re: Working - Whilst Coping With Chronic Illness [Re: NewNormalCharity]
Lon Offline
Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 7356
Loc: Gillette, Wyoming
whilst= Hebrew word
OT:5704
`ad (ad); properly, the same as OT:5703 (used as a preposition, adverb or conjunction; especially with a preposition); as far (or long, or much) as, whether of space (even unto) or time (during, while, until) or degree (equally with):

Ah, I love it here.






Hebrew = 5750
`owd (ode); or `od (ode); from OT:5749; properly, iteration or continuance; used only adverbially (with or without preposition), again, repeatedly, still, more:

KJV - again, X all life long, at all, besides, but, else, further (-more), henceforth, (any) longer, (any) more (-over), X once, since, (be) still, when, (good, the) while (having being), (as, because, whether, while) yet (within).

(
_________________________
Orandum est ut sit mens sana in corpore sano ....
a prayer for a sound mind in a sound body

respice finem


Lon

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#468731 - 05/02/12 01:47 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8655
Loc: Brittany, France (since Nov 08...
EEErrrr - Yes Lon - scratching head!! <LOL>

(agreed, love it here)
_________________________
MollyC1i - Riding OutAS

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#468732 - 05/02/12 02:08 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
Lon Offline
Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 7356
Loc: Gillette, Wyoming
Whilst, I am here,
I love every passing minute.

Almost like someone praying ..thou wouldst.. goeth...unto

lovest thou me?
_________________________
Orandum est ut sit mens sana in corpore sano ....
a prayer for a sound mind in a sound body

respice finem


Lon

Top
#468741 - 05/02/12 04:51 PM Re: Working - Whilst Coping With Chronic Illness [Re: MollyC1i]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8655
Loc: Brittany, France (since Nov 08...
Ahhhh Lon - you always have the right words...
_________________________
MollyC1i - Riding OutAS

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