Helping family understand

[Guest guest]

Is there a brochure or web site that can be used to help family

members understand PA? I find plenty of info for me, but nothing

specifically targeted to family members. Sounds like I'm not the only

one who could use such a tool. Hopefully somebody knows of one

somewhere.

sherry z

[Guest guest]

Aha...but there WILL be when finishes his book! -Betz

Betsy Jack itsbetsy@...

[ ] Helping family understand

Is there a brochure or web site that can be used to help family

members understand PA? I find plenty of info for me, but nothing

specifically targeted to family members. Sounds like I'm not the only

one who could use such a tool. Hopefully somebody knows of one

somewhere.

sherry z

[Guest guest]

Hi Sherry,

Someone here published this site

http://www.butyoudontlooksick.com/personal_essays/

a while back and I recommend it. I believe that the site was created

by a person with lupus, another auto-immune disease that seems to have

several parallel manifestations. When you get there look for " Spoon

Theory " .

Here is another good site that I think I learned from here:

http://www.rsdalert.co.uk/tipsutold/tips09.htm

Both sites are excellent resources. There are also the informative

arthritis foundations and societies that seem to exist in some form in

very nearly every country with reasonable standards of living. This

site offers a number of links which, in turn, offer more links.

Arthritis is huge!

Best wishes with your family..... Brent

[Guest guest]

if someone has that spoon story and could put it up . everyone can relate .

I believe some one namesd becky posted it a while ago. cathy

[Guest guest]

Hi SHery:

Go the Arthritis website: http://www.arthritis.org

Click on the store and they have a lot of free brochures and they

have a section titled family & relationships. Or click on resources

and scroll down and they have a lot of topics.

Alison

>

> Is there a brochure or web site that can be used to help family

> members understand PA? I find plenty of info for me, but nothing

> specifically targeted to family members. Sounds like I'm not the

only

> one who could use such a tool. Hopefully somebody knows of one

> somewhere.

>

> sherry z

>

[Guest guest]

Here are tips our wonderful listmember, Fran, has posted several

times on this site. You may want to share them with your family:

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.

>

> Is there a brochure or web site that can be used to help family

> members understand PA? I find plenty of info for me, but nothing

> specifically targeted to family members. Sounds like I'm not the

only

> one who could use such a tool. Hopefully somebody knows of one

> somewhere.

>

> sherry z

>