RE: AGH

[Guest guest]

Dear , I'm so sorry you are dealing with unsympathic people in your

life right now. I recently listed a set of pain tips just for this sort of

thing. I put my copy on the refrigerator where I was sure the whole family

would see it. Sometimes it helps people to really understand where you are

coming from. So many times, I don't think we communicate just how bad our

pain is. We say we hurt, but we don't really say how. Or we say we are

tired, but we don't explain that the fatigue if so exhausting just walking

across the room seems too much at times. If you think it will help, make a

copy and give them to your loved ones. I'll go ahead and list them here for

you, just incase you can't find the other email. Good luck and I hope these

help in some little way. Love, Fran

Tips for Dealing With People in Pain

1. People with chronic pain seem unreliable (we can't count on ourselves).

When feeling better we promise things (and mean it); when in serious pain,

we may not even show up. Pain people need the " rubber time " (flexible) found

in South Pacific countries and many aboriginal cultures.

2. An action or situation may result in pain several hours later, or even

the next day. Delayed pain is confusing to people who have never experienced

it.

3. Pain can inhibit listening and other communication skills. It's like

having someone shouting at you, or trying to talk with a fire alarm going

off in the room. The effect of pain on the mind can seem like attention

deficit disorder. So you may have to repeat a request, or write things down

for a person with chronic pain. Don't take it personally, or think that they

are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't

normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait for a

long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared to

listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very

temporary). When in pain, a small task, like hanging out the laundry, can

seem like a huge wall, too high to climb over. An hour later the same job

may be quite okay. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates

after a short rest. Chronic pain people appear to arrive and fade

unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a comfortable

chair, is as important as knowing where a bathroom is. A visit is much more

enjoyable if the chronic pain person knows there is a refuge if needed. A

person with chronic pain may not want to go somewhere that has no refuge

(e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in

pain. Your offer of a pillow or a cup of tea can be a really big thing to a

person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the entire

back, or in both legs, but not in one particular spot you can point to. Our

vocabulary for pain is very limited, compared to the body's ability to feel

varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is still

limited in its understanding of pain. Many people have pain that is not yet

classified by doctors as an officially recognized " disease " . That does not

reduce the pain; it only reduces our ability to give it a label, and to have

you believe us

[ ] AGH

I so tried of people thinking Im just bitching about pain that is not

there... It drives me crazy.Then I get mad and cant talk to them.I even tell

them I understand that they dont get it understand what it feels like to

hurt all over. Thnaks for listening My Enbrel will not be here till Monday.

[Guest guest]

Dear , I sure hope your Enbrel helps the pain, it did for me and I am

very grateful. I also hope you develop the kind of thick skin which can help

you cope with people who cannot possibly understand the pain. A lot of us look

so normal that it is understandable that others don't quite get it. I suggest

you surrouned yourself with people who do understand whenever you can. Best

wishes, Cheri

Koerner <koerner96@...> wrote:

I so tried of people thinking Im just bitching about pain that is not there...

It drives me crazy.Then I get mad and cant talk to them.I even tell them I

understand that they dont get it understand what it feels like to hurt all over.

Thnaks for listening My Enbrel will not be here till Monday.