Re: starting a support group IRL....

Good deal, Lampy!

The arthritis foundation will help out if you're interested... they had
me take an all-Saturday leadership course back when I got
"innaugurated" in 2002 to lead my local group. You get a gigantic
3-ring binder on "how to be a support group leader", and then a smaller
paperback "user guide" for planning group activities in general. And
all manner of info pamphlets, brochures, magazines, books, reprints,
etc. to share at meetings...as well as gifts and special stuff on
occasion.

The only thing is, you have to agree to their terms (at least give
tongue service), such as not talking about doctors in meetings, and not
giving opinions on meds or therapies. And you can't invite MDs to speak
unless they're board-certified rheumatologists. Well, I think I broke
al the rules within the first 6 months or so, because I'm more
interested in actually *helping* folks with FMS than in pushing the AF
agenda.

But having them as our sponsor got us goodies and opportunities, at
least until the local chapter got a new Ass. Director, who immediately
shut down all the benefits we'd enjoyed up until then, saying the AF
couldn't afford such things as postage for once-a-month newsletters
(but they *could afford hosting a Concourse D'Elegance Auto Show every
year, and beautiful paintings in their huge new office)... after which
I single-handedly switched things over to electronic-only
communications over the Internet, and of course then saw several older
members lose contact with us because they hadn't joined the information
revolution. It pissed me off royally... I bought several internet
appliances and got an ISP for those in the group without Internet
access, so they could stay in touch and do research, but only one
person took advantage of it... and then the ISP folded and left me with
a couple grand $$$ in now-useless equipment...

Anyway, it's commendable beyond words what you're aspiring toward,
whether on your own or with help (which I'd strongly suggest
getting/recruiting) or corporate sponsorship (which I'd prolly avoid,
given the chance again). My group ended up dissolving completely a year
ago this month, and the other two local groups were headed down the
same road the last I spoke to those leaders... although that is in part
due to information on FMS becoming more readily available to *most*
fibromites via the Internet, so they're not so dependent upon support
groups IRL to stay in touch and apprised of current information on our
DD.

I tried to keep a mix of meeting formats, such as purely
social/emotional support talks, information sharing, special speakers
(incl. self-defense demo from sherrif's dept), talks/demos on physical
therapies, etc... I really wanted to get the info I had out on how to
get financial assistance when the bills start piling up and the income
stops, but some who weren't so strapped for cash weren't interested,
and those who were couldn't even find a way to get to meetings. Demos
on physical therapy methods (yoga, self defense) didn't go over well at
all. Guest speaker from pain clinic who was big on using real pain meds
got poo-poo'd by a few who think using such drugs shows weakness. Guest
speakers on Sleep, relationships, and current research were HIGHLY
attended. Meetings where I'd re-play audio or video of talks by Devin
or Hal or Jacob went well IF I also handed out transcribed outlines for
folks to follow along... otherwise, interest dried up after about 15
minutes at most... it was a lot like teaching, heheheh.

Meetings where we just talked and introduced ourselves --
social/emotional meetings -- usually were pretty popular, but folks
tended to leave regardless in order to get home and watch their
favorite t.v. shows... which always bugged me, but I guess they didn't
have VCRs or Tivo yet, heheheh. So don't be surprised if you get mixed
reactions regardless of how hard you work at putting a meeting
together; you can't take it personally. You should definitely ask for
input as per what folks would like to cover/do at future meetings, but
it's not always possible to do what they want, when, how, and with
whom... and they're not always forthcoming about what it is they want
anyway. In part, that's because with FMS, nobody really knows when
they're gonna be able to come to a meeting anyway.

I *would* advise sticking with one particular AF term of agreement,
which is to NOT give medical advice or poo-poo a specific doctor in
meetings as part of the official agenda, since that can result in legal
troubles (although we never had any). Just ask folks to state their own
personal experience, prefaced with what we try to say here, "YMMV".

And ALWAYS plan far in advance, and plan for "Plans B, C, and D" for
each meeting, just in case Murphy's Law holds true, which it will. We
met at a local horsepiddle, and no matter how much I'd call in advance
to reserve audio-video equipment, there were times when it wouldn't be
ready or availble, so I bought and started bringing my *own* to be sure
meetings would go on regardless. And sometimes our refreshments would
be missing, or in an adjoining room... and sometimes the room was
freezing in the middle of Summer... just always had to be ready to
adlib to make things workable... but it was worth every minute,
especially the meeting my friends from NC showed up unexpectantly to
join the group. ;~)


Take care, good luck, and enjoy! Be sure to delegate whenever you
can...help is *good*.

(Hi, Nanny! I'm still kicking, just working on other priorities, trying
to survive.)

lightlady wrote:
well, my therapist mentioned i should think about it. thwn she mentioned
having a local church host it, and guess what? today at the local diner i'm
chatting with a woman who happens to belong to one of the local churches,
and before i even get have the words out out, she says "Fibromyalgia?! one
of our pastors wife has it, and yes, let me get you the number"

so it looks like i'll be starting a local support group :-) now i need
ideas for how to make it informative, yet not medically boring.

so, what would your ideal support group be like?

would you like to do the introduction thing, so everyone knows each othewr &
their ailments, or just let folks meet on their own? maybe have folks talk
about themselves at the end ( so it doesn't eat up all the time for the
meeting place <g>)

i'll be printing up The Letter to Normals, and various other thangies like
it... anyone have favorites? oh, and of course can't foget the Pantry
medicine cabinet <g> my name for my list of foods/spices/herbs that help.

i'm gonna be abusy busy lil bee ;-) but i'll keep me from runnin(gimpin)
the streets at least once a month LOL

--
lynn

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