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#1 of 667 Old 10-10-2007, 06:29 PM - Thread Starter
 
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Are there any of you out there?
How does it affect your parenting?

I feel like I have limited energy for my children and they are shortchanged in so many ways because I just can't do all the things other moms can.

Do you talk to your children about it, and do they have an understanding of just how your illness limits you? Do they understand the difference between not wanting to do things and being unable to do things?

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#2 of 667 Old 10-10-2007, 06:45 PM
 
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I have Fibro, I've had it for two years. I am still struggling with how to manage it. I am in pain a lot of the time, or sleeping.

It has effected my parenting and our lives in so many ways. I am only caring for my children by myself one day a week. DH works from home 2 days, and 2 days my child is in daycare. We have no family here and it seems very hard for most of my friends to understand. I look the same (except on really bad days when I have to use a cane).

I have talked to my 6 year old about it as it comes up, he was concerned that he would get it or I would die.

When things are really bad and I am in too much pain to move, we snuggle in for a good read or a movie night with popcorn,

DH does most of the down on the ground playing. He also does most of everything else. I do the best I can and hope that I will find a way to live with this illusive illness one day. For sure it sucks.

I'm not sure that right now the kiddos understand the diffrence but I hope in time they will.

Fibro is hard to deal with, perhaps we can start a tribe here.

Another good forum with good info is Daily strength.

Hugs to you. Oh and remember Fibro effects people diffrently you may not have it as badly as I do.
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#3 of 667 Old 10-10-2007, 06:48 PM
 
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I'm a fibro mom. I'm either always in pain one way or another or just exhausted all the time. I also have super severe anxiety that is almost crippling at times.

My dh works nights. So all the time I'm with the girls in the day he's here too (even though he may be asleep)
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#4 of 667 Old 10-10-2007, 06:51 PM - Thread Starter
 
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For me the worst of it is being tired and getting headaches. Everything they give me to alleviate the headaches makes me more tired.

DSD already lost one mother so I'm sure chronic illness is an added worry for her.

Before I had this, I was superwoman, now I have kids and no energy and it's so frustrating. I'm lucky that dh is able to make a living and work as much as he does, and that I can be self employed and work at my own pace. But it's so aggravating to know I used to be so much more able.

Now it's a major victory if the house is reasonably clean, everyone gets fed, I make a few bucks and it's a no headache day.

I have noticed that stress really aggravates it. When I had a job where there was a lot of bullying and mobbing behavior I had neck, shoulder and back pain that miraculously went away once I was out of there.

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#5 of 667 Old 10-10-2007, 06:55 PM
 
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I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I’m not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn’t look sick, she looked fine the other day…

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You’re tired of looking. You’re tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I’m depressed.

You’re right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I desperately need to go home and lay down. You used to argue but now you look at me and say, “Mommy, we can go home, I know you feel bad.” You don’t blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.
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#6 of 667 Old 10-10-2007, 07:00 PM
 
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For me the worst of it is being tired and getting headaches. Everything they give me to alleviate the headaches makes me more tired.

DSD already lost one mother so I'm sure chronic illness is an added worry for her.

Before I had this, I was superwoman, now I have kids and no energy and it's so frustrating. I'm lucky that dh is able to make a living and work as much as he does, and that I can be self employed and work at my own pace. But it's so aggravating to know I used to be so much more able.

Now it's a major victory if the house is reasonably clean, everyone gets fed, I make a few bucks and it's a no headache day.

I have noticed that stress really aggravates it. When I had a job where there was a lot of bullying and mobbing behavior I had neck, shoulder and back pain that miraculously went away once I was out of there.
I'm sorry about the headaches, I get them on occasion too. And I completly understand the feeling of needing to look back at the life you had then compare it to the life you have now.

I'm still doing that two years later, but then again it seems it takes me longer then most people to deal with stuff.
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#7 of 667 Old 10-10-2007, 07:00 PM - Thread Starter
 
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Yeah.

And the worst part of it is, it's invisible. So people think you're faking, or lying, or crazy.

Or you just need antidepressants.

Or a kick in the ass.

Or sex.

Or a better diet.

Or whatever else they think works wonders, because they have no idea what it is like to have an invisible disorder.

Anyone else have the chemical sensitivity that goes along with it, or am I just lucky in that respect too? Sometimes I feel like I should never leave the house at all.

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#8 of 667 Old 10-10-2007, 07:01 PM
 
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I'm a fibro mom. I'm either always in pain one way or another or just exhausted all the time. I also have super severe anxiety that is almost crippling at times.

My dh works nights. So all the time I'm with the girls in the day he's here too (even though he may be asleep)
Hugs to you, I hate the anxiety and depression the most.
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#9 of 667 Old 10-10-2007, 07:02 PM - Thread Starter
 
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I feel better just knowing I'm not the only one.

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#10 of 667 Old 10-10-2007, 07:03 PM
 
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Yeah.

And the worst part of it is, it's invisible. So people think you're faking, or lying, or crazy.

Or you just need antidepressants.

Or a kick in the ass.

Or sex.

Or a better diet.

Or whatever else they think works wonders, because they have no idea what it is like to have an invisible disorder.

Anyone else have the chemical sensitivity that goes along with it, or am I just lucky in that respect too? Sometimes I feel like I should never leave the house at all.
I don't seem to have the chemical sensitivity but I do have a gluten intolerence.

It is mind boggling what effects me some days and others not at all.
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#11 of 667 Old 10-10-2007, 07:07 PM
 
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Originally Posted by supakitty View Post
I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I’m not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn’t look sick, she looked fine the other day…

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You’re tired of looking. You’re tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I’m depressed.
You’re right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I need desperately to go home and lay down. You used to argue but now you look at me and say, “Mommy, we can go home, I know you feel bad.” You don’t blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.
This cuts right to the heart of it. I know I've been having a hard day, but really you hit the nail on the head.
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#12 of 667 Old 10-10-2007, 07:13 PM
 
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Group hugs, mamas. We all have each other.

-Laura
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#13 of 667 Old 10-10-2007, 07:53 PM
 
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Me, me! Just diagnosed. Will return later. Must eat dinner now.

ETA: I'm so very grateful to other chronic illness folks who "get it."
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#14 of 667 Old 10-10-2007, 07:58 PM
 
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I'm a Fibro mom too with agoraphobia and horrible anxiety.


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#15 of 667 Old 10-10-2007, 08:10 PM
 
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My oldest understand that I have "low energy days" and "moderate energy days." My little guy, not so much. I get a lot of excuses "it hurts when I pick up my toys" because he's heard me say the exact same thing. I know he's not in physical pain when he does these things, but it's hard to stress to him the difference.

I had a lot of help with DS when he was younger. I put him in preschool at age 2.75 because I couldn't run around and play with him the way he needed to- he'd spend WAY too much time in front of the TV because I lacked the energy to do much more with him.

My middle DD understands my physical limitations, but can't always "pick up the slack" with basic household routines. I suspect she may have FMS as well, so how can I "not beleive her" when she can't do something when I understand what it's like to not be able to do something (and not be believed) so how can I do that to her?

I just got approved for SSI, which means I can definitely afford to be a SAHM in the long term, which certainly helps my kids.

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#16 of 667 Old 10-10-2007, 08:14 PM
 
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I'm a fibro-mom. I was in a car accident that left me with back and shoulder problems. I was diagnosed about 3 years ago. It was huge relief to know "something" was going on.. even if you can't see it.

Frankenstein never scared me. Marsupials do. Because they're FAST.
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#17 of 667 Old 10-10-2007, 08:27 PM
 
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I have suspected fibro, it comes in waves and am in a bad patch at the mo. I also have EDS 3 (apparently there can be a connection between the two).

I feel my children are shortchanged too, especially as DH also has health issues. HOWEVER, it looks as though I have passed EDS onto both my children so at least I know, that if they go on to suffer in the future, at least they have someone who understands.
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#18 of 667 Old 10-10-2007, 09:33 PM
 
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My Mother has it. She's had it since I was 12 or 13. My brother is showing some mild symptoms. Is it hereditary?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
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#19 of 667 Old 10-10-2007, 10:39 PM - Thread Starter
 
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I don't know. I have it and my mom has it. I had one doctor tell me that only women really get it and that the men have been misdiagnosed, but I have no way of knowing what is true.

Some of the women in my thyroid group swear all it is is undertreated hypothyroidism.

Whatever it is, or however we get it, it sucks.

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#20 of 667 Old 10-10-2007, 11:06 PM
 
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I don't know. I have it and my mom has it. I had one doctor tell me that only women really get it and that the men have been misdiagnosed, but I have no way of knowing what is true.

Some of the women in my thyroid group swear all it is is undertreated hypothyroidism.

Whatever it is, or however we get it, it sucks.
I'm not sure I agree with that one.. since at one point I was on thyroid medication for an under active thyroid, and it has since corrected itself. I'm not medicated for it, and I test within the normal range every time. Yet still I have FMS.

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#21 of 667 Old 10-10-2007, 11:49 PM - Thread Starter
 
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I'm not sure I agree with that one.. since at one point I was on thyroid medication for an under active thyroid, and it has since corrected itself. I'm not medicated for it, and I test within the normal range every time. Yet still I have FMS.
Yeah, I'm not so sure about that one either.

Of course, I also disagree with what is 'normal' for thyroid and the TSH test is a bunch of hooey, but that is another thread.

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#22 of 667 Old 10-11-2007, 02:20 AM
 
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I'm a Fibro mom too with agoraphobia and horrible anxiety.

I also have agoraphobia. Me loosing Calypso has made it worse too because now I'm petrified if I leave my house it's going to burn down and I'll loose EVERYTHING that belonged to my angel
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#23 of 667 Old 10-11-2007, 02:22 AM - Thread Starter
 
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I also have agoraphobia. Me loosing Calypso has made it worse too because now I'm petrified if I leave my house it's going to burn down and I'll loose EVERYTHING that belonged to my angel

you've had more than your share of bad luck. I think not wanting to leave the house goes along with fibro to a certain degree anyway, though I wouldn't say I'm agoraphobic. I'd just rather be home than deal with traffic or any other irritations.

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#24 of 667 Old 10-11-2007, 02:47 AM
 
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Haven't finished reading the thread yet, but I can already tell that this is the tribe for me! I've only been officially diagnosed with fibro for 2 years, but I've likely had it for 15+ years.

Mama to Munchkin  and Chickadee ...and co-parent to 3 additional bundles of energy!
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#25 of 667 Old 10-11-2007, 02:52 AM
 
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you've had more than your share of bad luck. I think not wanting to leave the house goes along with fibro to a certain degree anyway, though I wouldn't say I'm agoraphobic. I'd just rather be home than deal with traffic or any other irritations.
Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case
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#26 of 667 Old 10-11-2007, 03:18 AM - Thread Starter
 
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Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case
you should. I think it would help ease your mind about it.

I think finding solutions to these things helps give us back a sense of control. For me that's one of the worst things about this, losing control of my life, and not being able to just do everything like I always did before.

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#27 of 667 Old 10-11-2007, 03:46 AM
 
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I really wish I could be the energetic, happy, relaxed Mom my boys need me to be. : I spend a lot of time in front of the computer or the tv, I just don't have enough energy to do much else. I do sometimes feel better if I actually get up and get out of the house... But a lot of the time I get out and just want to go home and take a nap. I am being treated for an underactive thyroid and PPD.
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#28 of 667 Old 10-11-2007, 10:17 AM
 
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Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case


I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.

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#29 of 667 Old 10-11-2007, 03:29 PM - Thread Starter
 
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I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.
Nooooooooooooooo!!!

We have to fly back to the mainland for a wedding, I hope I don't worry the whole time.

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#30 of 667 Old 10-11-2007, 03:45 PM
 
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I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.
It's funny people always say don't go back into the house after you get out. In my case. I'm getting the kids out and then getting ALL the pictures out and all Calypso's stuff.
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