RE: ....the job stealer..lol

[Guest guest]

Dear , Well I should have read this email before I sent my last email

to the group. I guess we won't get in trouble posting the tips twice in one

day..lol. I'm glad to see you saved them and we were think alike for sure

on this email. I wish I could take credit for them, but I have no idea

who wrote them, since it was signed author unknown. All I know is people

sure respond to one or all of the tips and it seems to help summarize how

they feel at times. It is hard to communicate your needs and feelings at

times when you are in pain. Sometimes when it's bad I can't even talk for

awhile. My family knows then to make sure I have things like a glass of

water, my medication and anything else I need and then they just sit with me

until the pain lets up. Having their quiet support sometimes helps more

than anything else. Believe me they aren't perfect, and we had a few

" rough times " when the pain first got bad. My husband could never

understand and still doesn't, why the doctor simply couldn't fix me. I

think he thinks of me as a car sometimes....lol. Seriously, I know it's

frustrating on his side of things since his life has had to change along

with mine. I'm sure the pressure and the worry gets to him at times as well

as me. That's why it's so important to talk about things and your feelings.

Once you get what you are worried about out, it never seems as bad as when

you held it all inside. I think my imagination is one of my biggest enemies

at times.

Anyway, I'm glad we both could help Tina and anyone else who needed the pain

tips today. Take care, Fran

Re: [ ] Thank You for the warm welcome!

In a message dated 11/2/04 10:45:43 AM GMT Standard Time,

thornofaradia1@... writes:

So assuming they would understand, I said sorry can't do anything

today. Sadly I've been informed that I'm inconsiderate, and self

centered. OUCH! My sister, bless her, stood by me.

Hi T,

It is unfortunate that most of your family are not supporting you through

this disease. (Good on your sister!) It is difficult enough to deal with

without having to deal with them trying to make you feel guilty about it.

Every so

often Fran posts a set of guidelines for dealing with people who have

chronic

pain. I was going to ask her to post them for you again but I realised I

have her original post in a folder so I have pasted it below to save her

the

trouble. Hope you don't mind me stealing your job Fran. lol It might make

them

reasses who is being inconsiderate and self-centered.

If you already have them by any chance just delete mine. Fran might be

sending them as I speak. Actually she probably won't be, as it must be the

middle

if the night in Florida. lol

Good luck,

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

[Guest guest]

My

> husband could never

> understand and still doesn't, why the doctor simply

> couldn't fix me. I

> think he thinks of me as a car sometimes....lol.

> Seriously, I know it's

> frustrating on his side of things since his life has

> had to change along

> with mine.

Fran, this is just so true, husbands look for a fix.

Mine keeps saying to me " you just get rest and get

better " , not realizing that this is about as good as

its going to get. Guess we're not your typical

newlyweds thanks to arthiritis.

warm blessings, jane

[Guest guest]

Hi Fran,

Well I guess I was right after all, that you were sending them as I spoke.

lol

I know when you first posted them I printed them straight off and let my

wife read them right away. I think sometimes when you " suddenly " can't do

certain things after having been able to do them for several days before hand,

(or

even hours before) it can look as if you are just being lazy and using the PA

as an excuse. The tips help you to explain how you are feeling day to day in

a far better way than just saying it. It helps your family realise that when

you say that you didn't feel up to it, you mean exactly that. You don't mean

that you couldn't be bothered.

Take care,

PS: As long as your husband doesn't start putting you into the garage. lol

You wrote: My husband could never

understand and still doesn't, why the doctor simply couldn't fix me. I

think he thinks of me as a car sometimes....lol.