How is your family reacting to you being a M-eur?...

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How is your family reacting to you being a  M-eur?... Empty How is your family reacting to you being a M-eur?...

Post  Cluelesskitty on Thu 21 Apr 2011, 11:43 pm

My closest family - my husband, my sister, my daughter and my closest friends and all the other people in my life
they don't really "get it".

They don't have M themselves, so they don't understand what kind of pain it is, what kind of limitations the M
put on everyday life, and frankly sometimes what they say and how they act makes me think they flat out disbelieve me.
Disbelieve I am in as much pain I say I am, as much immobilized as I say I am, may have M as easily triggered
by this or that as I say it can be.

But after close to 30 years if having and living with M it is a helluva lot better than it was when I was just a mere "M hatchling".

Oh, as I was just having the very first debilitating episodes when I couldn't say my butt from my head - O-M-G!
Looking back, I realize now the way I was treated was at times flat out an abuse!

"you are doing this to yourself"
"you are 'talking' yourself into these headaches"
"you got this HA b/c you did something you shouldn't have'
"you are just baby-ing yourself'
"don't exaggerate, it doesn't hurt that much"
"suck it up"
"everybody get headaches but nobody whines about them the way you do"
"you are "pills-o-holic"
" you are addicted to..... (name whatever).."
"you take way too many pills"
" you take too strong pills"
" you are an attention seeker'
"you should see a shrink"
you are just lazy. if you only... (put in whatever) ... "

One day I had had it.
I decided to get educated on the subject, and boy, the information and support I got pouring out from people
like me I met online was huge.
It was cathartic!

From that time onward, I took a stance and grew more confident and fought back every single day.
I asked to please stop expect I will make to every party as agreed, to stop smoking around me,
to turn down the volume, to ? - whatever bothered me.

Today I am forever thankful for the many people
who helped me to understand that I wasn't crazy when I said 'I know I will have M on weekend'
(and was laughed at in return) -
indeed the M was going to happen for this single fact - I was sleeping in on weekends, and there is such a thing
as a "weekend M'!!

So in your face all you doubting Thomas-es who accused me back then of "doing this to myself! huh!

Risa




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Post  30yrsofheadache on Fri 22 Apr 2011, 5:36 am

Risa,
I think that the only people in my life who understand the pain are the ones that go through it. Even if it s not as often or as severe. I have my daughter Zoe, my sister, and my best friend. That is in order of how badly they get them, but they all understand. My Mom understands when it is going on as she has taken me to the ERr many times.

But in between she forgets how bad it is or she gets frustrated and says things like "You should drink more water". My husband is completly numb to my pain as he has seen it so often. He concentrates on what I cant do and how much the migraines cost us instead of my discomfort. I have blocked out most of the unkind comments I have heard over the last 38 years. It would be too much to remember it all..... No
Hugs,
Cindy

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Post  Paradox on Fri 22 Apr 2011, 10:12 am

I have been fortunate to get tremendous support from hubby, family, friends, co-workers and bosses. The only person who doesn't get it is my sister. But, she doesn't get or approve of most of what I say or do.

The problem is people trying to heal me. "Have you tried holding your breath when you stand tippy toed with sparkly red shoes on? It worked for my third cousin once removed".

Even my moderately handicapped son is an angel about coming up behind and gently massaging my head, that "Mommy will feel better". My other son suffers himself so he is very understanding.

I'm very lucky. BUT, I am also very close mouthed about the amount of narcotics I take. Once I gave my son who is almost 300 lbs a 1/4 of what I take and he slept for 8 hours. And I take that to function at a 2/3 at work.
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Post  Jewishmother on Fri 22 Apr 2011, 10:26 am

I have been very fortunate that my husband has always been supportive and always believed me about my sometimes very weird migraine symptoms. They started the year after we were married and it took us 12 years and 1 nervous breakdown (mine, not his!) before we found a doc who believed me. He is a very easy-going person and just goes with the flow.................when I have to lay motionless on the couch every evening he is there when it is over to bring me tea or just sit and hold my hand. The only thing that he has not been able to follow through on is get a new pair of slippers that don't make so much noise when he walks around!

I also have a very close friend who is very supportive and very good at talking me through "the doom and gloom" that occurs after my migraines are over. My kids are grown now but my daughter who has migraines does understand and my son does try to be empathetic when I have migraines when they are visiting. Supportive in person and on sites like this one are critical to my sanity!

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Post  Cluelesskitty on Fri 22 Apr 2011, 5:29 pm

That "numbing to" part is very spot on!

I've noticed the very same thing happening to me during all those close to 30y of my struggle with M.

Eventually, whatever the scraps of the sympathy and empathy was there is fizzling out,
and I am being faced with unpleasant indifference, or worse - am being treated like I am regular, normally functioning person.

I don't know what is worse, really - the indifference or abuse at times...

Risa
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Post  alli on Mon 25 Apr 2011, 9:43 am

I heard every one of those comments from my ex-husband and one of my sisters. No matter how much I tried to educate them, they persisted in their belief that I was the cause of my illness. I have very, very little to do with either of them now.

My boyfriend on the other hand is the total opposite. He doesn't blame or give unwanted advice. He told me once that he knows I am intelligent and that I have already looked into everything that can be done. If it isn't working, it's the disease and not me. I still feel a bit guilty when I can't do something or spend the entire day laying down, but he never says or does anything to make me feel guilty, it's just me.

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Post  30yrsofheadache on Mon 25 Apr 2011, 11:26 am

Alli, He sounds like a keeper!
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Post  alli on Mon 25 Apr 2011, 11:45 am

Oh he is! I am so thankful that I found him. He tells me the same thing all the time.

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