Re: Well meaning advice

October 19, 2006

Phyllis,

I hear you loud and clear. I like to tell the person, " I'd gladly trade bodies

with you for a day. It would be nice to feel so good and maybe you could 'fix'

me. " HA HA

Tonya

fraft13 wrote:

Is anyone out there tired of people telling you to just start moving

around and deal with your injury because it could always be worse.

October 19, 2006

>Phyllis wrote;

> Is anyone out there tired of people telling you to just start moving

> around and deal with your injury because it could always be worse.

I couldn't agree with you more. Just this morning I got an email

from someone, perhaps in this group, I don't know, who said I should

keep doing the stretches and walking.

My doctor strickly has told me not to do any of that until the

inflamation in my neck's spinal cord had gone down, and the spasm's

have been controlled.

Now, who do you think I'm listening to? My doctor of course.

When others say those things, I know, they are just trying to be

helpful, but there isn't an MD on the end of their name, I just

shrugg it off, and say thanks, but my doctor knows what's best for

me. Take care and try to feel better.

/New York, taking yet another nap, spasm's are getting to me

again.

October 19, 2006

The ONLY way I make it through my days is telling myself " it could always be

worse " because I know from experience that it could. And does and will, etc.

My sister always tells me that if I exercised more and got more sleep I

wouldn't have Fibro. WHATEVER! Some things I just have to let roll off.

Caitlin

>Phyllis wrote;

> Is anyone out there tired of people telling you to just start moving

> around and deal with your injury because it could always be worse.

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October 19, 2006

> Is anyone out there tired of people telling you to just start moving

> around and deal with your injury because it could always be

worse....Phyllis

>

Yes, I am tired of hearing that. Sure, sure things could be worse,

and we need to follow our doctor's orders to help ensure that they

dont get worse! The cold and rain will make things worse, but that

isn't the root for me. I'm tired of being asked when I will be going

back to work. I'm the one supporting a child on my own, it is not my

choice that I'm not working.

The fact is that any activity intensifies the pain for many of us.

Some things I have to work through despite pain, like nerve glides

or " flossing " for the problems with my arms/hands.

I can't carry much myself, a milk jug is too much. I've learned to

stay away from purses with shoulder straps. The majority of my

problems are upper extremities. Most recently, as my lumbar spine has

flared due to hypermobile joints and is radiating, my restrictions

have increased so I'm not allowed to bend at all. My PT exercises

have been reduced to self traction and core strengthening as

tolerated, just the gentle pulling in and releasing the lower

abdominals. (I've also been prescribed Naprosyn and now Prednizone

for inflammation.)

Our doctors, physical therapists, and occupational therapists are

trained to help us recover. Our friends and family generally are

not. I think they compare what we feel to some of their occasional

aches and pains. It is so different.

At least we have this group where everyone pretty much understands!

Take care,

Jackie

October 20, 2006

--- " fraft13 " wrote:

>

> Is anyone out there tired of people telling you to just start

moving

> around and deal with your injury because it could always be worse.

>I just screen my calls and don't answer

> the phone if I am not in the mood for uneducated " well meaning

advice " .

Hi Phyllis -

That's all you can do. Let it go, ignore them, avoid them. Some

people never learn and for our own sakes we have to let go of the

stress it causes and just get on with our lives despite these people,

or get those people out of our lives entirely.

My own pet peeve are the well-meaning folks who keep asking " is your

back better yet? " despite me explaining over and over again that I

have a spinal cord injury and those don't get better. You wouldn't

expect Reeve to have suddenly " gotten better " and got out

of his chair to start walking, would you? Well, just because my

injury is only a partial cord injury and I'm still walking, doesn't

mean it's going to get any better either.

I explain this until I'm blue in the face, I tell them " don't even

bother asking me because it will never get better, " and they still

ask me every time. I end up feeling like I've disappointed them

somehow when I don't say " oh, yes, it's all fixed now, I'm just fine

and dandy! " As a result, I just smile and say I'm fine when I'm not,

just to get them off my back.

Cheryl in AZ

October 20, 2006

Hi Cheryl and Phyllis,

I agree with BOTH of you. My favorite thing is my psycho mother

calling me a drug addict cause I have to take narcotic pain pills,

mainly due to the spina bifida I got from her taking presecription speed while

pregnant with me to loose weight. I am so sick of it.

Then of course there is the DDD, spinal cord attached to a vertabre, arthritis,

bulging discs, lol, i think you got the picture. I am so sick of it.

Ugh. Now she has my 22 year old daughter convinced i am a drug

addict. Someday I will live in peace. You take care and ignore other

people.

Sunshine

October 20, 2006

>My sister always tells me that if I exercised more and got more sleep I

wouldn't have Fibro.

I can so relate to this. Recently I've been having horrific body pain, where I

am actually curled up in a fetal position for some/minor relief. Hubby takes me

on a VERY long walk (to help), and the next day has me out planting plants (up

& down). I was worse this whole week.

He has read/heard that for fibro exercise is recommended; and doctors have told

us this. But what exercise? I can't deal with any more pain. Just when I

thought I had reached my pain limit, things got worse. I'm walking talking

pain.

Oh, and both him and my mother feel I should sleep on a " regular schedule every

day " . That my sleep schedule and eating habits are preventing me from getting

well. I stay in bed because I can't get out of bed.

Or yes, I am sleeping because of sheer exhaustion that I'm dealing with every

day. I don't eat well, never really did. That could probably get better. But

I'm so sick of hearing the fix-it-all opinion of others. UGGGHH!!! It all

wears me out and I only want to go back to bed & hide! Hee hee

October 20, 2006

wrote:He has read/heard that for fibro

exercise is recommended; and doctors have told us this. But what exercise? I

can't deal with any more pain. Just when I thought I had reached my pain limit,

things got worse. I'm walking talking pain.

,

One thing I have learned is that we have to learn to listen to OUR bodies and

not let other people or guilt influence what we do and when we do it. If you

feel like your up for a walk some days, go for a walk. IF you feel like your

body needs to rest, then sleep. I know that if I try to exercise in a flair I

will pay and pay and pay, its not worth it. Also, when you finally feeling human

again, don't overdo by doing everything you've wanted to do in the last week.

That will set you back bigtime. I know this all too well.

Your husband is trying to help but just doesn't know what it feels like. Its

sweet that he does at least try. My husband barely acknowledges my pain unless

I'm in such a bad mood he can't ignore it. LOL!

Although I'm not the worlds best eater either, I have noticed that when I eat

junk, I feel horrible. I used to have IBS but cut out milk (not cheese or yogurt

though) and immediately got better. Then I stopped eating meat (but not fish)

and I got even better. Some food just seems to trigger bad symptoms. We

sometimes know what they are but if your like me sometimes the craving over-run

good sense. Especially during certain times of the month, if you know what I

mean.

Take care,

Caitlin

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October 20, 2006

Mellisa said;

> He has read/heard that for fibro exercise is recommended; and

doctors have told us this. But what exercise?

Hello Mellisa,

Has your doctor, at least recommended a physical therapist?

If not, why? I have no idea what fibro can do to a person.

Even with my recent setback,and after I'm done with these latest

medications I will continue to go to the physical therapist.

I know, you may think I'm crazy for doing so, but I wasnt to improve

myself. I'd rather be able to walk without too much pain rather than

not at all, so I'll keep going.

I was told, the other alternative, And I don't like it one bit as

it didn't help my lower back one bit. These shots are called

Epidurals, and I am supposed to get them in my Cervical spine, I am

not to happy about that. So, I am going to do everything in my power to avoid

it.

In 1998, I had gotten those shot's to my lumbar and it worked for

the first shot, but three weeks later, they pain came back much

worse than previously. After several more weeks of bed rest and

restarting physical therapy, I was told not to lift anything above

five pounds.

So far, so good, but somtimes, I have to lift , say a gallon of water, and wham,

I feel it bad in the lumbar. I no longer buy anything avove a half gallon of

anything, and my friends and family help out when I need to go food shopping.

I'm lucky I guess in that regard. But, I'm sure your neighbors

would be happy to help out, if you would just ask them.

Take care, and I know I always say this, but try to feel better, and

I'll do the same.

/ New York

October 20, 2006

>Cheryl wrote: " My own pet peeve are the well-meaning folks who keep asking " is

your back better yet? " despite me explaining over and over again that I have a

spinal cord injury and those don't get better. "

Oh, yes! I absolutely hate being asked, " How are you today? " because my answer

is always the same-- " I hurt. " Some days I hurt more, some days less, but it's

been ages since I haven't hurt at all. I refuse to answer, " I'm fine, " because

I'm not! My usual response is along the lines of " ssdd " (same " stuff, " different

day). LOL

I think that it's especially difficult for people to understand that some

physical problems just do not get better. They're used to taking an antibiotic

and the infection goes away, or taking vicodin after having a tooth pulled and

feeling better in a few days. It's hard to hold their ignorance against them,

but then again, it's hard NOT to hold it against them either, if you know what I

mean. I can't sit there and explain all of my physical problems over and over

again to everyone I meet. And while I don't whine about how much I hurt, I

refuse to sugar-coat it.

My experience as a pain patient is bringing back thoughts of when my daughter

was first diagnosed with bipolar disorder. Just as there's a stigma to mental

illness, there's a societal taboo against chronic-pain patients and those of us

who must take some pretty strong drugs ( " Just Say No " ) as well. People don't

believe me when I say that I don't get " high " or a " buzz " from my morphine or

Actiq or lorcet. I'm running out of ways to try to impress upon them that I

don't enjoy taking my meds. Not one bit.

And then there are those who warn me against addiction. Why can't they

understand that addiction isn't a problem if I'm going to be a pain patient for

the rest of my life?

Or the ones who say, " Just get out of the house and *do* something, and then

you'll feel better. " Okay--and just how am I supposed to get somewhere when I no

longer drive? What happens when the pain overwhelms me when I'm " out. " Or my leg

gives out. Or I get real tired and have to lie down. Do they really think I've

chosen to live like this?

Now that I'm back in a wrist and elbow brace, people are asking, " What's wrong

with your arm? " I don't even know what to answer anymore. Can't say, " Well, I've

had five surgeries on it, and now my neuropathies are inoperable. Want to hear

about my foot and hip, too? How about my face pain? " Arghhhhhh. So I'm just

answering, " I injured it. " And pray they don't ask for more details.

Fortunately, my husband understands. And my children, having been through all

of my surgeries and recoveries, etc., are wonderful about it. But then, of

course, there's the guilt I feel for not being able to be the perfect mother,

perfect wife. That's a whole 'nother vent, though!

I've had a really long day. My son had his wisdom teeth out this morning, so I

was tending to him all day. Then some friends came over to cheer him up, and

they just left--finally! I'm exhausted but wired right now, not a good

combination. Just took my bedtime meds, so hope they kick in soon so I can get

some sleep.

Will update in another post, either tonight or tomorrow.

Hugs,

a

October 20, 2006