Re: My Husband Dosent Get It!!!!

[Guest guest]

Gail,

Welcome back! I'm sorry that you are dealing with a less than

sympathetic spouse...goodness knows there are a lot of those out

there, as well as a host of other not so understanding family and

friends!

My hubby has been great, but I've gotten nothing but grief from my

mother, right from the very beginning, when I had the adverse drug

reaction that started this whole nightmare. She just absolutely

couldn't believe that an antibiotic could do as much damage as it

did, and last so long. Then, when I was diagnosed with Fibro, she

made it pretty clear that she didn't consider it a " real " illness.

When my PCP started treating me with narcotics, it really hit the

fan. I had to endure lectures about how I was going to get addicted

to the Vicodin I was taking, and that sort of BS. It took my

sister, who is almost done with her nursing degree, sitting down and

explaining FM in full detail for her to start to get a clue, and

even now I don't think she totally understands. Then, when I told

her that the doctor switced me from Vicodin to Oxycontin, she

freaked out, teling me how dangerous it was. I almost a to laugh at

the absurdity of it. I don't thind hes realized that the biggest

majority of us doh't get addied, an tend to under-medicate.

okay, the drugs are making me loopy, and I'm writing weird stuff,

with tons of mis-spellings so I beter get going. Take care, adn I

hope to year from you soon1

Much love,

Jen

[Guest guest]

Dear Gail,

I wish I had some easy answers for you. Elwyn does not understand my

pain, but he acknowleges that it exists, and accepts my limitations.

For example, I *HAD* to go the grocery last night... we had nothing in

the house for supper. Dear, sweet husband, he offered to drive me,

knowing I don't like to drive with the pain meds that I take. I'm not

sure that I really understand this disease... I just know that I hurt

like hell.

I would suggest that you get him a good book, maybe Fibromyalgia for

Dummies, and ask him to read it so that he can better understand what

you are going through. Tell him there is a lot of difference between

sitting in a theatre seat and standing in the kitchen cooking supper.

By the time supper rolls around at our house, I am too worn out to even

think about cooking. I try to crock pot most anything, or fix something

like tonight... frozen lasagna that I just pop in the oven and cook. I

can sit in a restaurant and order a full course meal and enjoy myself.

If I had to cook the same meal, I would be too exhausted to even nibble

at it.

Now that the weather is getting warm, it is time to break out the grill.

Elwyn does all the grilling, so we will be enjoying a lot more steaks,

chicken, and pork. All I will have to do is throw a pre-made salad

(from the produce section) into bowls, throw a couple of potatoes in the

microwave, and bingo!! We have a delicious meal, thanks to Elwyn's

cooking. My only complaint is that he sometimes gets my steak to done.

I keep reassuring him that as long as it is brown on the outside, it is

done enough to eat. When I say extra rare, I mean almost raw. Elwyn

used to think that he liked his steaks rare until he saw mine. If I am

feeling REAL energetic, I will pop open a can of mushrooms, saute them

in butter, and serve on top of the steaks. Total time for me in the

kitchen.... 10 minutes tops.

Some of Elwyn's patience and understanding may come from the fact that

he cared for his invalid mother for 20 years or more before her death.

So he is used to the role of caregiver. Also, Elwyn is disabled

himself, and this gives him an idea of what I go through. He is not

disabled to the extent that I am, but enough that he can appreciate my

pain. He has a history of lung cancer, but I think he also suffers from

chronic fatigue syndrome. CFS is one of the diseases that Agent Orange,

which was used in Vietnam, caused, and Elwyn is constantly tired. He

sleeps an average of 8 to 10 hours a night, takes a 2 to 3 hour nap in

the afternoon, and is STILL tired all the time. I have asked him for

help getting the house cleaned before I go in the hospital on the 12th,

and he picked up the living room a bit and had to sit down and rest. If

anything gets done for the house, I know I am the one who is going to

have to do it.

But overall, I have to say that I could not have a better, more

understanding husband, and not a day goes by without me telling him how

much I love him and appreciate him and thank God for finally letting us

be together (we've known each other for 40 years but have only been

married for the last 10 of those years.

Please feel free to print this message and show it to hubby if you wish.

Take care, and God bless you and your family.

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

oooh, girl, i understand totally what you're saying. i was dx'd

back in 1998 with fibro. at that time my b-f (now my dh) was always

calling me a hypochondriac, going to the dr all the time. he didn't

understand at all.

since then i've tried to educate him on it. some of the info gets

through to him, some doesn't. he still, to this day, thinks it's

funny to grab my foot/toe as he's walking past me when i'm in my

recliner. or he comes up behind me and grabs my ribs. he gets

pissy and says " oh, so i can't even touch you anymore? " . it

frustrating. but his memory is so bad due to his own medical probs

so i can't blame him; rather it's his disease.

but still i get to the point that i just want to open up and

scream. instead, i scream inwardly. but i keep taking my vioxx,

and my glucosamine and my vitamins. and when absolutely necessary i

take a pain pill.

please don't give up. one of these days we will have a good day and

that day will be sooooooo much better than what we've already

experienced. i look forward to my good days, and rely on them to

get me through what is coming. and if some good soul would just get

rid of the barometer that the weather man is always talking about on

the news....i hate the change in the barometric pressure. that's

what ALWAYS causes me probs.

you're not alone, gail. i think we've all experienced what you're

talking about, in one way or another.

hugs, teresa

[Guest guest]

Hi Gail-

Just joined today but you're story was so sad I had to say hang in

there. Yea, but don't we anyway...every minute of every day. Sigh.

It's that whole looking normal thing I guess. Not sure about my hubby

yet, he's borderline understanding, so we'll see. I've done a lot of

swearing and screaming (in regards to my Rhuemy) the last few days

and you're right- it just compiles the depression and the pain. I am

new to this but my aunt is not and I have decided that I will be my

own Advocate. Whether it be with the doctor or the family. I might

suggest that you show him all the many internet articles that specify

that his lack of support will only debilitate you. Let someone else

speak for you- through an article or a book (The Fibromyaglia

Advocate is great) and then ask him the hard question of whether his

with you or not. You have the right to know.

Good Luck!

[Guest guest]

Tracey

you hit it right on sister!

The truth is I often think that this must be what dying with cancer

feels like. Except there is no peace in sight. I suppose people with

cancer might take offense, but honestly, it's that bad. However, we

look so normal so it's hard to comprehend from the outside. Sigh

in Indy

> Gail,

>

> I'm in the same boat! I've had this since I was 14, and had to put

up with this attitude from my father and my sibs. (Now my sibs all

have it!) Now, it's my husband! (We were just married in August)

Though he hasn't said it yet, he doesn't believe that I'm as sick as

I say I am. Throw the word cancer out there and everyone is, " Oh, you

poor dear! " Say Fibromyalgia and it's " Oh, is that all? " Sometimes I

wish I were sick enough to be hospitalized, then he'd take me

seriously! You gals with intelligent, sympathetic, and understanding

husbands out there don't know how good you got it! Hang in there

girl! Once you have a definite dx, take your husband to the Dr's

office to discuss it with him. Then maybe he'll sit up and take

notice.

>

> Until then, you just take care of you!

>

> Tracey

> Boone, NC, a very wet and snowy place tonight!

>

>

> My Husband Dosent Get It!!!!

>

>

> Hey Everyone, Its Gail in Georgia, I finally got my e-mail fixed

and

> Im back in the group,, Finally,, Ive missed you all.

>

> I have a little story to tell you all: Last night my husband and

I

> were talking and I was telling him about all the fatigue and

joint

> and muscle pain I've been in.... and HE Said,, Well thats strange

how

> you fit your illness to accomidate things you dont want to do.

>

> He says, If I want to go out to dinner, I go, If I want to go to

a

> movie with a friend,, I go,,, If I want to go to Savannah to see

my

> sister with my mom, I can go,, But Yet, you cant get the laundry

> done, and you cant fix a big meal at night, and you sleep all the

> time.,

>

> My Husband says,, I think your just a Lazy hypercondriac..!! well

> people I blew my top! He says, If Im so sick why is it the

doctors

> cant put a name to it. What is it he says, Fibro? Arthritis?

Lupis?

>

> I told him that Thats why I was seeing a Rhumy to find out! It

really

> hurts my feelings that my husband after 16 years of marriage

thinks

> Im faking and am lazy!

>

> You see, HIS family has never been sick in a day of there lives,

He

> cant fantom the idea of someone being chronically tired and weak

all

> the time.

>

>

> Is anyone else having problems with getting spouces and family

> members to understand what were going through?

>

> Now Because Im so Upset at him im having a really bad flair up

today!

>

>

> Depressed, sad, mad and feeling let down!

>

>

> Gail in Ga.

>

>

>

>

>

>

[Guest guest]

Hi Gail,

After reading the many responses to you plight, I must say i agree

with most of them. After all, who wouldn't choose to spend what

little energy we have on enjoyable things with our family and friends

(which in turn elevates serotonin and improves pain/depression, etc)

instead of crappy housework. Does the vacum not fit his hand?? Draw

him a diagram of how to make dinner/wash dishes/laundry/etc...all the

things he would have to do if you weren't there. Does he want a wife,

soulmate, companion,lover, best friend or a friggin maid!!! He can

hire a maid if all that s$#@t is that important to him. And also

mention that if he weren't such a complete a**, maybe you would want

to use some of that precious energy doing things with him!!!

(Wow, do i sound bitter or what??? Gail, I've been there, done that,

got the T-shirt and got the H out!!!)

hang in there girl. You have NOTHING to feel guilty or bad about.

Janelle in CT

[Guest guest]

Dear ,

As someone with both fibro and PROBABLE kidney cancer (having sx on 4-12

to confirm that, as well as remove part of my kidney), I can say that I

was in no way offended by your statement. I have often said that this

must be what bone cancer feels like, cause I cannot imagine a pain any

greater. But just when I think that the pain cannot get worse, the

devil cranks it up another notch. The advantage to being a cancer

patient is that doctors will acknowledge your pain and treat it

aggressively...this is something the DEA is not going to come behind

them and question them about. But with fibro, especially since the Rush

Limbaugh scandal broke, doctors are scared of losing their medical

license for rx'ing pain meds for fibro patients. Only a handful of

states have laws that protect physicians who rx pain meds for chronic

pain patients (California is one of them... can't remember the

rest...the fibro fog is dense tonight). Elwyn has no trouble getting

his pain meds rx'd, even though it has been 7+ years since his surgery

and he is technically cancer free. But it is a constant battle to even

keep my Oxycontin rx continued. Best of luck in finding a specialist

who will treat this pain aggressively.

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!