fibro-fog and lots of responsiblity

April 21, 2002

Kathy writes,

> Hope everyone is having a good day. I don't usually write to the group

> because of my time and energy constraints. Here is my question. What

> do you do to take care of you?

>

> I can only tell you what I do. I do not have children at home although my

> daughter and granddaughters live next door. My son-in-law died at 43 of a

> massive stroke.

>

> I, therefore, just have myself, my husband and my cat to take care of. I

> read a lot, try new recipes and am cooking more. This has always been an

> important part of my life along with reading. I was not able to cook much

> of anything for a while. My husband helps me cook and cleans up after

> dinner.

>

> I watch Court TV and do jig saw puzzles. I travel although no where near

> as much as I used to. I am going to England with my daughters and

> granddaughters in July. I don;t really want to go as the trip is very hard

> for me but I promised the girls and I have never broken a promise to them

> and I never will. My doctor is going to give me a heavy duty sleeping pill

> for the trip over as we travel overnight. We leave on Thursday and arrive

> on Friday. I think this will be my last trip to England. I cannot manage

> them any more.

>

> I go to mystery conventions when I can. There are two this year. One in

> Dallas and one in Austin.

>

> I also cook at chili cookoffs but once again I think that I will not be

> doing much of that. I cooked in the Ladies' State Chili Championship

> yesterday and I was in so much pain all day that I thought it would never

> end. I was in severe pain last night and again today.

>

> I am very sad and unhappy to have to give up these things that I love but I

> can know longer cope. So I guess, I will be doing mostly reading, watching

> Court TV, do what I can about the house, cook and try to go to the mystery

> conventions when possible.

>

> I think that I will be spending more time at home. Grocery shopping,

> errands and doctor's appointments will be most of my trips out of the

> house.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman.

April 21, 2002

Hi!

I am new to this list so this will be my first post (besides my

introduction)...

I can relate to your situation somewhat in that I, too, have a special needs

child. My son is 6 1/2 years old and has autism and moderate to severe

mental retardation (I don't actually agree entirely with the mental

retardation diagnosis but it gets us a lot of services so I allow it). We

just had my son's IEP meeting and it actually turned out pretty well

considering that I've been more tired and spacy than usual and I'm surprised

I managed to pull everything together.

ANYWAY...the main thing I do to take care of myself is to make sure that I

always squeeze in some time to read a book and play on the computer. It

doesn't even matter what I read...most of the time it's King or Dean

Koontz. And I like to play Solitaire and Morejong on the computer after the

kids are in bed. And actually the egroups are part of my taking care of me

routine. I'm on lists for autism and now this one and it is so VERY nice to

know that I'm not alone in my day to day struggles.

Jen in Iowa

April 21, 2002

Hi All

Hope everyone is having a good day. I don't usually write to the group

because of my time and energy constraints. Here is my question. What

do you do to take care of you? I deal with a lot of low energy and

fibro-fog. I've given up my career about 6 years ago. I was a system

analyst. Now at the age of 40 I have 2 dogs, 2 cats, 2 kids and a

supportive husband. My 1st son is almost 9 and he has been identified

as gifted, atypical attention deficit disorder, writing problems, some

sensory integration dsyfunction and anxiety. My 2nd son is almost 5 and

he has spina bifida, hydrocephlus, dsypraxia, neurogenic bowel and

bladder, sensory integration dsyfunction and a few other challenges.

And then there is me. I have fibromyalgia, panic disorder and post

traumatic stress disorder. I took my boys out of public school and I

have been homeschooling for over a year. Both boys go to various

therapies--ie speech therapy, occupational therapy, physcial therapy...

Anyway my sons are a joy to be around. We have great fun together. We

have found some great homeschool groups. My time for myself is limited

and I have spent my childhood and adulthood taking care of others. Well

now it is time to take care of me and I want to know how you find the

energy to do that? Does anyone have any input?

Thanks

Kathy

April 27, 2002

> Hi All

>

> Hope everyone is having a good day. I don't usually write to the

group

> because of my time and energy constraints. Here is my question.

What

> do you do to take care of you? I deal with a lot of low energy and

> fibro-fog. I've given up my career about 6 years ago. I was a

system

> analyst. Now at the age of 40 I have 2 dogs, 2 cats, 2 kids and a

> supportive husband. My 1st son is almost 9 and he has been

identified

> as gifted, atypical attention deficit disorder, writing problems,

some

> sensory integration dsyfunction and anxiety. My 2nd son is almost

5 and

> he has spina bifida, hydrocephlus, dsypraxia, neurogenic bowel and

> bladder, sensory integration dsyfunction and a few other challenges.

> And then there is me. I have fibromyalgia, panic disorder and post

Hi. I have a 15 year old daughter with Rubinstein-Taybi Syndrome and

lots of other health issues and developmental disabilities. That

takes a toll on us big time. You have two. Yes they add an extra

bittersweet twist to our lives that we would never intentionally give

up yet there are days when I just want to get of the hypervigilance

train for awhile. As an Old Hippie, I sure miss qualuudes... Anyway,

an item that is a malic relief formula, (magnesium, manganese etc)

REALLY helps my energy and my pain levels not to mention my fatigue

and constipation!

> traumatic stress disorder. I took my boys out of public school and

I

> have been homeschooling for over a year. Both boys go to various

> therapies--ie speech therapy, occupational therapy, physcial

therapy...

> Anyway my sons are a joy to be around. We have great fun together.

We

> have found some great homeschool groups. My time for myself is

limited

> and I have spent my childhood and adulthood taking care of others.

Well

> now it is time to take care of me and I want to know how you find

the

> energy to do that? Does anyone have any input?

>

> Thanks

> Kathy

April 28, 2002

Kathy writes,

> Well

> > now it is time to take care of me and I want to know how you find

> the

> > energy to do that? Does anyone have any input?

I take Adderall for fatigue and energy. It does help me with the energy and

the fatigue level is not what it was but I still have a lot of fatigue.

The energy part helps me to get some things done about the house. Do some

shopping and things like that. However, I do not plan a lot for one day. If

I go grocery shopping, that is all that I can get down that day and I am in

pain for the next couple of days.

Tomorrow I have to go to the bank. That and picking up the house will be it

for that day.

I have learned, the hard way, what I can do and what I can't. You will hear

a lot on this list about listening to your body. You have to. It will tell

you what you can do and what you can't and you can more or less plan your

life around what you have learned by listening to your body. If you don't

listen, you will hit a brick wall and end up with a flare.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

April 28, 2002

I just wanted to compliment you two ladies on having

such a marvelous attitude towards your challenged

children. You have your own maladies and their's,

too, to have to endure and yet you don't complain at

all and count your blessings. More of us should be

like you two wonderful women:) Love & Hugs, Lynne

--- territa58 territa58@...> wrote:

>

> > Hi All

> >

> > Hope everyone is having a good day. I don't

> usually write to the

> group

> > because of my time and energy constraints. Here

> is my question.

> What

> > do you do to take care of you? I deal with a lot

> of low energy and

> > fibro-fog. I've given up my career about 6 years

> ago. I was a

> system

> > analyst. Now at the age of 40 I have 2 dogs, 2

> cats, 2 kids and a

> > supportive husband. My 1st son is almost 9 and he

> has been

> identified

> > as gifted, atypical attention deficit disorder,

> writing problems,

> some

> > sensory integration dsyfunction and anxiety. My

> 2nd son is almost

> 5 and

> > he has spina bifida, hydrocephlus, dsypraxia,

> neurogenic bowel and

> > bladder, sensory integration dsyfunction and a few

> other challenges.

> > And then there is me. I have fibromyalgia, panic

> disorder and post

>

> Hi. I have a 15 year old daughter with

> Rubinstein-Taybi Syndrome and

> lots of other health issues and developmental

> disabilities. That

> takes a toll on us big time. You have two. Yes

> they add an extra

> bittersweet twist to our lives that we would never

> intentionally give

> up yet there are days when I just want to get of the

> hypervigilance

> train for awhile. As an Old Hippie, I sure miss

> qualuudes... Anyway,

> an item that is a malic relief formula, (magnesium,

> manganese etc)

> REALLY helps my energy and my pain levels not to

> mention my fatigue

> and constipation!

> > traumatic stress disorder. I took my boys out of

> public school and

> I

> > have been homeschooling for over a year. Both

> boys go to various

> > therapies--ie speech therapy, occupational

> therapy, physcial

> therapy...

> > Anyway my sons are a joy to be around. We have

> great fun together.

> We

> > have found some great homeschool groups. My time

> for myself is

> limited

> > and I have spent my childhood and adulthood taking

> care of others.

> Well

> > now it is time to take care of me and I want to

> know how you find

> the

> > energy to do that? Does anyone have any input?

> >

> > Thanks

> > Kathy

>

__________________________________________________

May 1, 2002

Hello Kathy!!

It sounds like you do indeed need some pampering yourselft!! I admire your

great attitude despite all the challenges given.

It seems that your kids are doing better at home than in a public school. I

don't have kids (YET!) but I have the same expectation for me, that I will do

whatever the kids need. My mom was very " self-less " too. The kids always came

first. I want to be the same way.

One thing I wish my mom would have done, or kept doing, was going out with

friends. No matter what is is you enjoy, it could be coffee, shopping,

anything. Just sit around, watch TV, anything. I find it hard to have and keep

friends because of my fatigue, but social activiteis are good.

You could have some friends/people over for a " party " . No sales pitch intended,

but I do Kay, and you could host a skin care class with some friends. You

get to try out the skin care products, lotions, perfumes, colors. It is very

pampering and relaxing. And fun!

Or you could do a candle party, there is a company that does shows like that

with candles, or tubberware, or pampered chef.

I like my Kay connection, because I like to buy aromatherapy bubble baths,

and lotions, pulse point gel for headaches and so on.

I just bought a milk - sleep - relaxing bubble bath. That in itself made me

feel better. I haven't even tried it yet. :-) Tonight seems to be a good

night for that.

I also have relaxing aromatherapy lotions.

I am learning about relaxation and biofeedback right now. I am not calm enough

to meditate or to do visualization/relaxation tapes. I honestly believe that is

beneficial. I wish I could do it. I am too tense, but it's one of my goals to

do this.

I am now actually able to take some time for me doing something I like to do no

matter what is going on.

If there are too many things to do I don't even want to get out of bed on

weekends.

Therefore on Sundays, I make myself a cup of coffee, read the Sunday paper,

watch Tv, all at the same time and my day starts good. If I would try to start

my day with something not fun, I get overwhelmed and frustrated easier.

Also I like to go to bed early and read. I am reading Sue Grafton right now. I

really enjoy it!

Another one of my favorites is my GameBoy. It is more difficult to find games

for adults, but I have a couple of puzzle games, and I like my all time favorite

Super Bros. It is fun, relaxing, mindless enjoyment of playing a game.

And I can be in bed when I do it.

I would recommend e-bay for the Gameboy Advance or the Color Gameboy. I buy

games at a used games store. They can always tell me what the game is about and

I can try it out. They also have used Color Gameboys. I think these kind of

stores are everywhere. Definetly at a better price. Now that the Gameboy

Advance has been out for a while, you can get the Color Gameboy much cheaper.

Tetris, of course the all-time favorite. I just got a Word game, like hangman,

they give you a definition and blanks for the letters, and you guess the

letters.

I love Solitaire, too.

Those are all relaxing lazy things to do with no specific purpose, just

entertainment. I feel much better if I do this.

I hope you will find something to do that is good for you, something you enjoy.

With kids at home it is probably much harder to go to the gym and get out of the

house. It also takes even more energy for me to do that. But please beware of

addicting Gameboy games!!

And I almost forgot to mention that I take Provigil to fight fatigue. I still

haven't checked into it, so I have no clue what I'm taking, but I am not willing

to give it up!!! It does give me more time in the day. I don't know it it

would be helpful for anybody else, but I really benefit from it.