Re: I'm a Cripple Here

((((((((((((((((((((( Rosie & Normie ))))))))))))))))))))))))))))

It was soooooooooooooooooooooooooo good chatting and catchingm up last night
:-)

I'll never sing that song the same way again... gotta cut the foot-loose,
foot-loose ((((((((((((rosie)))))))))))))) *<;-}

glad we had a good laff, my endorphin levels went way up last night!! I'm
glad i helped ya 'deal with life' ;-)

--
lampy

Life is like a cribbage game...
No matter which cards you play, you might still end up in the same spot.
"Rosemarie Shiver" <post147@xxxxxxxxxx> wrote in message
news:4lbbqhF138q1U1@xxxxxxxxxxxxxxxxx
Heya, Janey,

Let me reinforce that what I posted and intend to mean is those who
say
diet and exercise alone has stopped their FM symptoms ( and that of their
friends who self-report having Fibro) prolly do not have Fibro at all.
There
have been tens of ppl. coming thru that are self-diagnosed and perhaps
hundreds who lurk who also are convinced that if Us FM'ers just ate
better
and exercised more we all would be all better. One, in fact, was here for
quite a long time being especially critical of those of use who are
exercise
intolerant.

I never implied that *you* weren't an FM'er Janey. I do strongly
restate
that if a gluten-free diet and some exercise make someone all better it is
dubious that they have FM at all...and that's not the case with you.

If you never flare again then I'll doubt you have FM, too. I'm not
being
overly negative -- everyone who has FM will inevitably flare. No getting
around that. Some flare mildly.

I'm happy for anyone who can avoid being a cripple....but that's what I
am because I have crippling arthritis. You sound, Janey, as if being a
cripple is something so absatively terrible and preventable that those of
us
who are are hopeless. I guess since I'm a cripple I didn't TRY hard
enuff?
That's something in the overly optimistic posts about possible things to
do
for FM that I find really sad and really insulting. Neither I or anyone
else
with crippling, disabling conditions cause ourselves to be this way due to
not trying all the diets and not trying to exercise enuff. We didn't eat
or
slack ourselves into it nor can we diet or exercise out of it. It's the
reality that you're lucky enuff to have avoided...and it's mostly genetics
to thank. The parents you had vs.the parents I had. Nothing to do with
eating or moving...luck of the draw. As it is that you did nothing to
cause
your aneurism....again...luck of the draw. I wouldn't trade my being a
cripple (as if that's a BAD word) for your aneurism...and prolly vice
versa.
I wish you could see me. I wish you could hear me. If you could see and
hear
how vibrant and completely alive and connected Rosie is in spite of being
a
cripple then being a cripple might not be such a horrid idea, my
friend.:-)
Lights and I can even joke about if I'll wind up "Footloose"...she gets me
laffing over the idea. That's what friends do....help you deal with the
life
you have, not the one you wish you had.You are my friend and I'm writing
this as if you are sitting on my living room couch and I'm getting across
my
ideas complete with hands waving wildly in the air. The written word can't
convey it as well but I'm TRYING.

We both can control our stress levels to some extent and I did post
that
stress being a trigger and sleep disturbances causing exacerbations are
universal for FM'ers. The sleep issue is a major one for me...I feel just
like Margo. The sleep of the exhausted rather than the just.

So it actually goes both ways and I feel put down for the arthritis I
have that I had nothing to do with coming down with...not because I cause
it
and not because I didn't do enuff to prevent it. And I feel I DO speak for
Us FM'ers who have tried so many things and still have severe uncontrolled
flaring. There's a lot of Us FM'ers and we deserve a strong voice
too....something other than if you just do this and that you'll be better,
too. Some of Us FM'ers won't because there is no cure and it's that
simple,
right now anyway. If I thought there'd be no cure whatsoever I wouldn't
bother to keep up with news or care about other FM'ers.

I feel that the recent emphasis on what we eat and how we move is OK
as
far as it goes but that there's a whole slew of Us FM'ers who won't get
significantly better no matter whut we do diet and exercise-wise. And as a
true cripple; for us I speak.

Janeious Hugs,
Rosie S.
Demented Dame

--
"If you wanna get it done, you gotta fight for yourself." -- Meat Loaf,
Bat
Outta Hell II
"Janey Pooh" <janepooh@xxxxxxxxxxxxxxxx> wrote in message
news:1156595029.879435.216340@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I want to talk a bit about this idea that "Us FMers" can't get better
with changes in diet and exercise alone. And also the idea that if
anyone says they do, it's because they never had Fibromyalgia or had
only a very mild case.

First - I am not speaking for "Us FMers". I only speak for ME. And
For ME - changes in diet, exercise AND *stress* (stress being perhaps
the most important word in this sentence) have made me Feel Better.

No, it's not a cure and I am not cured. But I *do* Feel Better than I
did in the past when I was constantly going to the doctor about my
fibro pains, was on several different medications to try and help my
fibro, and really thought I was doomed to a life of pain and agony.

I remember days - MONTHS - when I felt so much pain in my hips and
knees that I couldn't make it up our flight of stairs to go to bed. We
looked into moving from our beautiful old brick house to a bungalow
because my husband, looking towards the future, couldn't see anyway
around it. I was going to be a cripple for the rest of my life. We
couldn't make love because it hurt my hips too much. I couldn't reach
anything in the cupboards because it hurt so much to raise my arms.

I remember Fibro AGONY that went on for months without abating. That
doesn't happen to me anymore. Yes, I still feel pain, but it doesn't
last.

I was originally Dx by a GP, then a Rheumatologist, then two different
Physiotherapists and eventually a Pain Specialist. All of them found I
had 18/18 of the Tender Points and met all the criteria for
Fibromyalgia. I remember bawling my head of in doctors' offices,
begging for something to help me. They gave me A/Ds, changed my A/Ds,
gave me muscle relaxants and NSAIDS for a time. They didn't help, so I
eventually quit taking them all.

I **do** have it. I've had this question pop up before, and it really
upset me a lot back then. It felt like people thought I was lying, and
why would I lie about such a thing.

Now, to be honest, it almost feels GOOD to think that people don't
believe I have Fibro. Means I must be doing pretty good at reaching my
GOAL - which is NOT to be **cured** but to FEEL BETTER, regardless of
how I do that.

I *never* say I'm CURED, nor even that I'm "in remission". Remission
to me means going five years with no re-occurence of symptoms at all -
and without all the serious meds and stuff that it took to get there.
That's not me. But I **do** Feel Better. I feel better when I eat
GOOD food. I feel better when I get light exercise and DO things.
Yesterday my son and I went to town and spent the day shopping and
going for lunch etc - and I didn't Flare. I Felt Better.

That's because, most importantly, I Feel Better when I don't STRESS OUT
about having Fibromyalgia. Or *anything*, for that matter. I was
talking to my son about this yesterday and he reminded me,

"Mom, it's not about anybody else but YOU. You know and I know that
you've been through some pretty major crap in your life and you're
doing amazingly WELL in spite of it all. It doesn't matter HOW. If it
works for you, that's GREAT. Don't stress out about what anyone else
thinks of you - just worry about what YOU think of you. *I* am very
proud of you - and I've lived with you every day of my life. I've been
through the bad times and the good, and I much prefer the GOOD. Do
whatever you need to to get there."

That's a pretty smart kid I got there. ;o)

For *ME*, spending a lot of time fretting and stressing about what I
should take, how I should supplement, what I should and shouldn't DO -
makes me fret and stress, which makes me flare. It keeps Fibro On My
Mind all the time, which isn't good for me. That's why I post about
*otherstuff* too - to keep Fibro from dominating my every thought.
Yes, I do still flare, but now it's for an hour or two, instead of
months. I try to eat well, I try to sleep well, I try to get out and
walk and move around and I try to enjoy life.

I am not a cripple and I don't intend to be one. My seizure disorder
crippled me for a while too, but I'm learning that THAT has a lot to do
with stressing about it TOO - and it's calmed down A LOT since I
started thinking along those lines. I'll probably always need to take
my Tegretol, but not freaking out about having TLE has made me have a
lot less temporal lobe seizures. Doesn't mean I never had it in the
first place though.

Stopping all the freaking out about why I had a big swollen belly and
deciding to Just Eat helped my stomach calm down WAY more than all
those bloody tests I had done at the hospital did. Doesn't mean I
never had a swollen belly.

I am just me. I only speak for ME when I write posts here. Whatever
"Us FMers" need to do to cure ouselves is irrelevant to me. I am not
looking for a CURE. I'm looking for ways to help myself FEEL BETTER.
And what *I* need for that is good food, light exercise and moving
around, sleeping as much and whenever I can, and learning NOT to get
myself in a stress cycle that makes me flare.

Take GOOD Care,

Jane





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