Re: Re: Feeling overwhelmed, frustrated, even angry then ...

[Guest guest]

In a message dated 3/5/01 8:36:24 AM Pacific Standard Time, stephanyfisher@... writes:

As if I can even get a sitter for my special needs child, and as if my biggest problem is whether I caught my afternoon nap. I over hear people in the general population have conversations and they seem so shallow, and I feel like a stranger in a strange land. Then I come back here and feel much better! That's exactly what support groups are for!

I can relate!!!!! Everyone is constantly telling me that I should "take a break." Well, that's a lot easier said than done!!! We moved from IL to CA in July, so I really don't know anyone I would trust with my son even if everything else with him was "normal." On top of that, my husband is in the navy so he's out to sea quite a bit of the time. I manage to get time away from home and the kids when he's here, but when he's gone (like now) we just make do. It's hard and I feel really resentful when someone tells me I need to get away for a while. Wouldn't I love to???? <sigh> I'm glad I'm not the only one to feel this way.......

a

"My hands are small, I know,

but they're not yours they are my own

but they're not yours they are my own

and I am never broken."

~Jewel

[Guest guest]

In a message dated 3/5/01 8:49:14 AM Pacific Standard Time,

queenoftheeast@... writes:

<< We moved from IL to CA

in July, so I really don't know anyone I would trust with my son even if

everything else with him was " normal. " >>

Where did you move to ? I'm in CA too. The bay area, Castro Valley. If you

are anywhere near me maybe we can get together! How old are your children?

:-)

kandie

Kandie and (8 years)

* My autism website : <A

HREF= " http://www.homestead.com/wholefamily/wholefamily1.html " >Spectrum

Children's Support</A> *

* 's website: <A

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A>

*

[Guest guest]

In a message dated 3/5/01 8:58:09 AM Pacific Standard Time, kandiedem@... writes:

Where did you move to ? I'm in CA too. The bay area, Castro Valley. If you are anywhere near me maybe we can get together! How old are your children?

We're in San Diego, but thanks for the offer!!! I think we're just having a tough time getting to know people right now because we're so busy. My daughter is 6 and in 1st grade. My son (who has OCD) is 3. Seems like if we're not at a doctor's appt, we're hauling my daughter somewhere or going to pick Daddy up from the ship or.........You get the idea. LOL We're on a waiting list for a Tiny Tots preschool-type program and that should help tremendously!!!

a

"My hands are small, I know,

but they're not yours they are my own

but they're not yours they are my own

and I am never broken."

~Jewel

[Guest guest]

Oh! A little too far for easy trips! lol!

Hopefully you'll find some friends for support around you soon.

Your daughter is perfect age for my son. He gets along pretty well with

K-1st graders. ;-)

Ah well, take care!

kandie

Kandie and (8 years)

* My autism website : <A

HREF= " http://www.homestead.com/wholefamily/wholefamily1.html " >Spectrum

Children's Support</A> *

* 's website: <A

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A>

*

[Guest guest]

In a message dated 3/5/01 10:36:36 AM Central Standard Time,

stephanyfisher@... writes:

> You know those people (and relatives) who say things

> like, " oh, I'm tired too. I'm so stressed out. I didn't get my nap

> today AND I have to go to the movies tonight. Hey, why don't you

> just grab a baby sitter and come with me? " As if I can even get a

> sitter for my special needs child, and as if my biggest problem is

> whether I caught my afternoon nap. I over hear people in the general

> population have conversations and they seem so shallow, and I feel

> like a stranger in a strange land. Then I come back here and feel

I know what you mean. When I say I'm tired ... I mean that my muscles are not

working right. That my vision is going double, that I'm having to think about

swallowing because if I don't, I choke on my saliva. When I say that I'm

tired, I don't mean that I'm going to drag through a movie, when I'd rather

be at home watching TV. I mean that I CANNOT go to the movie ... because I

will fall because my legs are not working right. When I say I'm too tired to

eat, I don't sit down and eat anyway, because if I do, I will choke. The

fatigue that comes with these damn neuromuscular diseases is so overwhelming

at times and it's impossible to explain. I read some interesting things the

other day of what can cause a neuromuscular reaction ...

A cobra bite gives a myasthenic reaction, so ... if you get poisoned by a

cobra, until they give you the antidote, you'll know the fatigue I go

through.

Running a marathon causes a neuromuscular fatigue. Someone just finishing a

marathon for the first 5 minutes knows what a myasthenic or MS patient feels

.... only the feeling never goes away for the myasthenic and comes and goes

with alarming frequency (sometimes never leaving) the MS patient.

No, a healthy person with healthy children do not know what fatigue is. And

someone with normal (so to speak) children do not know the emotional fatigue

that each and everone of us on this list feel

And do I need a break? You bet ... but I never hear the people who tell me to

take it easy, don't do so much offer to take my kids for me so that I can get

a break. They tell me not to work so hard, but do they come do my dinner

dishes? Nope. Not even the ones who REALLY care. It just overwhelms the

people who really care.

Well ... I could go on ... but I won't

Peggikaye

[Guest guest]

I hear you both! As a single mother with three troubled kids with diagnoses

and multiple therapists I too get sick of hearing the " don't forget to set

boundaries and take care of yourself " rap, especially with the romance

thing! Enough already! Who has time or the inclination? And how many people

want to jump into a relationship with this kind of baggage? Not to mention

who would I trust to have a say in my childrearing? Ha! I'm better off just

keeping on.

--

>From: queenoftheeast@...

>Reply-

>

>Subject: Re: Re: Feeling overwhelmed, frustrated, even

>angry then ...

>Date: Mon, 5 Mar 2001 11:46:14 EST

>

>In a message dated 3/5/01 8:36:24 AM Pacific Standard Time,

>stephanyfisher@... writes:

>

>

> > As if I can even get a

> > sitter for my special needs child, and as if my biggest problem is

> > whether I caught my afternoon nap. I over hear people in the general

> > population have conversations and they seem so shallow, and I feel

> > like a stranger in a strange land. Then I come back here and feel

> > much better! That's exactly what support groups are for!

> >

> >

>

>I can relate!!!!! Everyone is constantly telling me that I should " take a

>break. " Well, that's a lot easier said than done!!! We moved from IL to

>CA

>in July, so I really don't know anyone I would trust with my son even if

>everything else with him was " normal. " On top of that, my husband is in

>the

>navy so he's out to sea quite a bit of the time. I manage to get time away

>from home and the kids when he's here, but when he's gone (like now) we

>just

>make do. It's hard and I feel really resentful when someone tells me I

>need

>to get away for a while. Wouldn't I love to???? <sigh> I'm glad I'm not

>the only one to feel this way.......

>

>a

> " My hands are small, I know,

>but they're not yours they are my own

>but they're not yours they are my own

>and I am never broken. "

>~Jewel

>

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[Guest guest]

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