Lisa Breger

Hi all,

The reason I finally took the leap of faith and began unschooling three months ago was because I realized that life holds no guarantees, and I didn't want to waste time focusing on the future at the expense of today. I wanted to enjoy life TODAY, as you never really know how much time you have together as a family. Ironically, as soon as I made this decision, my oldest daughter, then 13, came down with a virus. The symptoms never went away, and after various guesses and many tests, we finally have a diagnosis of Fibromyalgia. I won't go into the details, but it is a chronic illness, and my daughter has been bedridden for three months now. I have three other children, ages 10, 7, and 2. I have been focusing much of my time and energy trying to make sure their life is as normal as possible. Fortunately, my 14 year old daughter can be left home alone for a few hours at a time, and my husband works close to home. So as long as we take our cell phones, I can still get out of the house sometimes with the other kids.

If I stand outside the situation, and look at it objectively, I can see that everything will work out in the end, and that unschooling will still be successful. But I can't always look at it that way, and I am very worried. I am not free to be with my kids in the way I would want to be. My first challenge is having a two year old! Although she won't be two forever, for now, it hinders many activities. Next challenge is having to spend some time on the computer each day doing research on Fibromyalgia. It is a fairly newly recognized illness, with no known cause or cure. There is laundry, and general clean up. Then of course I do need to spend time with my oldest daughter.

I feel like I am not really providing the type of environment I would want for my kids. Some days I don't even get a chance to read to them. Since we are still new to unschooling, and the other freedoms I have given as an extension of the unschooling way of life, such as TV and Gameboy, etc.., they do spend much of their day watching TV. My 7 year old son loves TV so much, and is sure that at any moment I will take away his freedom. He can hardly be distracted, even to see a snake in our yard or tadpoles growing legs and becoming frogs! I have read all the posts on TV, and I do trust that this is ok. What I don't like is that I cannot watch it with him. Maybe for a few minutes a day, but mostly he is on his own if he chooses to watch TV. This does not feel good to me.

My kids are not complaining about how their day plays out. Maybe it would have been the same, even if my oldest wasn't sick. Maybe this is deschooling in action.

I know my kids are learning things, such as compassion for the ill, and all about Fibromyalgia. But I envisioned being able to offer them the world, and I can't. We are very limited now in what we can do. I spend about one hour a day with them. (When we are home) I'm with them more than that, but REALLY there and paying attention - about an hour.

Can this still work? Do others have days where your kids are pretty much unattended for most of the day? Maybe I just need to make sure we get out of the house more.

Any advice or comments on unschooling life with a chronically ill child would be appreciated.

Thanks,

Lisa
~~~~~~~~~~~~~~
Lisa Breger
lisa@...


[Non-text portions of this message have been removed]

[email protected]

In a message dated 6/6/02 9:53:13 AM, lisa@... writes:

<< What I don't like is that I cannot watch it with him. Maybe for a few
minutes a day, but mostly he is on his own if he chooses to watch TV. This
does not feel good to me. >>

Can he watch in the room where your 14 year old is? Then she would have
company, HE would have company (and someone to discuss the stories and art
and songs with), and you would have less guilt. Holly loves Arthur, and I'm
glad she has two friends who do too, because they talk about it in detail.
"Why?" "Did you notice..."

<<Can this still work? Do others have days where your kids are pretty much
unattended for most of the day? Maybe I just need to make sure we get out of
the house more.>>

Yes it can. Yes those days happen.
I think getting out is a great thing, myself. And not even out to something
fancy. Just out to the sky and street you've never driven down can be
sufficient news to stimulate thought and discussion.

I haven't had a chronically ill child, but if she's up to interaction with
the other kids (one at a time?) or watching videos or TV, or whatever with
another kid, it seems two birds with one stone.

Sandra

Lisa Breger

<<Can he watch in the room where your 14 year old is? Then she would have
company, HE would have company (and someone to discuss the stories and art
and songs with),>>

He does at times, watch with her. But I never thought how this could give Tiffany a feeling of purpose. With all she now can't do, she can start thinking about things she CAN do!

Thanks,

Lisa



[Non-text portions of this message have been removed]

Scott P. Cook

Lisa -

I'm not sure that the frustration you're experiencing is entirely the
result of your daughter's illness. I feel some of the same frustrations
with 4 perfectly healthy kids. Some of mine is due to my being less
organized than I should be, and much of it is due to the vast number of
activities my kids participate in. Some days are great, some days I
feel like I don't do near enough with my kids and that the months are
slipping away from us way too fast. But my kids still get so many great
things out of the life that we lead that I try not to guilt trip too
much that it isn't as perfect as I'd like. And I think that if things
are really going in a direction that makes you feel entirely
uncomfortable, something that you can't predict right now will happen to
change your routines and take you in a different direction. This is
what I figure with our activity schedule. Sometimes it makes me
uncomfortable, but if it's not meant to be, it will change. A kid will
lose interest in something, or we'll run out of money, or a better
opportunity will come along, or a conflict will intervene, or one of my
little gymnasts will sprain something. Not that I'm wishing for
injuries, but I think that things end up taking the turns they need to
take. I'm not a religious person at all, but do think that life happens
the way it's supposed to. You sound like you and your kids will be fine
in the end. Enjoy what you can, and don't feel guilty about the rest.
And I have to take a kid to the gym now!

Laurel in Burke, VA

-----Original Message-----
From: Lisa Breger [mailto:lisa@...]
Sent: Thursday, June 06, 2002 11:51 AM
To: [email protected]
Subject: [AlwaysLearning] advice on life with an ill child





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[email protected]

Lisa, could you put her bed in the living room? When my sister had
Mono, a very long time ago, my mom moved her bed into the dining room.
Right smack in the middle of everything. There were five of us sharing
one room and it was a cold and dark room and my mom thought she'd never
get well if she was stuck in there. In the dining room she was right
there when everyone sat down to eat, and she was in the sun and she had
to keep herself looking good just in case one of my brothers friends came
over. ( A few years later she married one of those friends, and that was
twenty nine years ago.)
Maybe your daughter would be mortified to be on display, but maybe it'd
make her feel like she was still part of everything.

Deb L

Lisa Breger

<<I try not to guilt trip too much that it isn't as perfect as I'd like>>

You're right. I suspect there will always be lazy days, sick child or not. And nothing is ever perfect.

<<I'm not a religious person at all, but do think that life happens
the way it's supposed to>>

That's a point I'm trying to get across to Tiffany. Even though she is ill, I feel there must be a reason for it, and something good will come out of it. The challenge is to find out "how to make lemonade from the lemons she was given."

<<Lisa, could you put her bed in the living room?>>

We've made a deal that she spend a few hours each day in the family room, where she can still rest on the couch. This way she is still interacting with the family, and avoiding some mental atrophy that might occur shut up in her room by herself. Her happiest moments are when the 2 year old comes to snuggle!

Thanks for the input.

Lisa


[Non-text portions of this message have been removed]

Lisa Hardiman

Deb: that is a great story. Both of my kids like to be in the middle
of everything. So far their sickness has improved. We are moving onto
summer with the activities here and there. We look forward to the
sustainability fair and a visit from my father. Lisa

-----Original Message-----
From: ddzimlew@... [mailto:ddzimlew@...]
Sent: Thursday, June 06, 2002 2:48 PM
To: [email protected]
Subject: Re: [AlwaysLearning] advice on life with an ill child

Lisa, could you put her bed in the living room? When my sister had
Mono, a very long time ago, my mom moved her bed into the dining room.
Right smack in the middle of everything. There were five of us sharing
one room and it was a cold and dark room and my mom thought she'd never
get well if she was stuck in there. In the dining room she was right
there when everyone sat down to eat, and she was in the sun and she had
to keep herself looking good just in case one of my brothers friends
came
over. ( A few years later she married one of those friends, and that
was
twenty nine years ago.)
Maybe your daughter would be mortified to be on display, but maybe it'd
make her feel like she was still part of everything.

Deb L

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[Non-text portions of this message have been removed]

Lisa Hardiman

Deb: Sorry, I wasn't paying attention to the egroup I was reading and
now realize you are talking to another Lisa. Actually my kids had Mono
too. It is a bummer, and takes a lot of time to get over it. Lisa

-----Original Message-----
From: Lisa Hardiman [mailto:lisa-hardiman@...]
Sent: Thursday, June 06, 2002 8:16 PM
To: [email protected]
Subject: RE: [AlwaysLearning] advice on life with an ill child

Deb: that is a great story. Both of my kids like to be in the middle
of everything. So far their sickness has improved. We are moving onto
summer with the activities here and there. We look forward to the
sustainability fair and a visit from my father. Lisa

-----Original Message-----
From: ddzimlew@... [mailto:ddzimlew@...]
Sent: Thursday, June 06, 2002 2:48 PM
To: [email protected]
Subject: Re: [AlwaysLearning] advice on life with an ill child

Lisa, could you put her bed in the living room? When my sister had
Mono, a very long time ago, my mom moved her bed into the dining room.
Right smack in the middle of everything. There were five of us sharing
one room and it was a cold and dark room and my mom thought she'd never
get well if she was stuck in there. In the dining room she was right
there when everyone sat down to eat, and she was in the sun and she had
to keep herself looking good just in case one of my brothers friends
came
over. ( A few years later she married one of those friends, and that
was
twenty nine years ago.)
Maybe your daughter would be mortified to be on display, but maybe it'd
make her feel like she was still part of everything.

Deb L

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[email protected]

> Deb: Sorry, I wasn't paying attention to the egroup I was reading
> and
> now realize you are talking to another Lisa. Actually my kids had
> Mono
> too. It is a bummer, and takes a lot of time to get over it. Lisa

That's ok Lisa! I didn't know you were on this list! I'm so glad you're
here.
I hope you're kids continue to feel better. Are they going to be up for
the trip to Missoula? Not too far away now!

Deb L

Melinda

Dear Lisa,

"Life is what happens when you are making other
plans."

Someone please assist on the author. I love that
quote, but am terrible at remembering where I picked
up all the trinkets of wisdom that swirl in my mind.
(Maybe, John Lennon.)

That pretty much sums it up.

I wouldn't underestimate the level of compassion their
sister's illness gives the rest of the family an
opportunity to develop.

Personally, I can't think of a greater trait to
nurture.

Most of us deal with some type of "issue" that impedes
us from living out our "perfect unschooler" vision.

Money is a big one. Wouldn't we all like to travel
'round the world with our children?

I have 4. It is not fiscally possible.

Time. Many unschool parents must work. Laundry and
dishes and cleaning all take time. Especially for
unschoolers who extrapolate not requiring chores as a
feature of the freedom they grant their children.

I think that's dandy if you have 1 or 2 children.
More than that and it becomes a physical
impossibility. Family chores must be shared among
able family members. I think that assuming
responsibility is a Good Thing. How else do we learn?

The idea of parent/tutor is a lovely and romantic one.
I guess there are some households that are actually
able to pull this off. If mom gets up at 5 am to do
all the cruddy housework and chores and can still
manage to put on a happy face when she serves the hot
breakfast at 8:30, followed by a day devoted to the
individual pursuits of an only child ... Well, what
child wouldn't feel they'd hit the jackpot?

Maybe.

Maybe they'd end up completely egocentric and
unappreciative of what was made to appear so
effortless.

For me, "unschooler" is simply a word that I apply to
denote those in my household who must be legally
documented- those 7-16 years old who are not attending
school. We are all just Living. Living our lives to
the fullest each and every day. Some days are
better-more enjoyable- than others. Some days you'd
like to get a re-do on.

Our outside activities used to be severely compromised
by my youngest son. He had Severe ADHD. (I have no
interest in going into that debate.) Suffice it to
say, he is my 3rd son and he was not "normal" in
comparison to the other 2 ... or any other child you
could comfortably take out in public.

But, he is part of the family and so we all had to
make adjustments. We did things at home. We did as
much as we could at home. I arranged for the other 2
to do things with friends and family. I took them
places when their dad was home. Or, he took them
places.

If we HAD to go somewhere, Dr's, etc... I would try
to time it right and hold my breath that we didn't
pick a "bad" day.

This was our life from the time he was 2-9. He'll be
10 next month and the severity of the behaviors has
lessened dramatically. Thank Goodness.

I assume since you are posting here that you have
internet access.

The whole world is right here. No library in the
world has better research capabilities than the web.

It's also a great place for kids to connect with
others who share their interests. (Supervised of
course)

Do what you can and forget about what you can't.

No positive results will come from your torturing
yourself over the idyllic unschool family you'd like
to be.

And take comfort; they don't exist anyway.

I think if you give yourself permission to do the best
that you can each day, plan activities/outings that
are doable within your present life situation, and
RELAX, you'll be fine.

I would try checking out local homeschool support
groups. You might be able to find another family with
various ages/interests that you can trade off with.
An older sibling might enjoy the company of your
daughter while the mom could take your younger ones
for awhile.

There are endless opportunities, options and
possibilities- once you let go of the one- that isn't
available to you.

That letting go is the hard part. I know that.

Especially as unschoolers, (that weird little minority
of the already weird-enough ; b homeschooler
population), we pressure ourselves to make it all
"work". To be daily examples of "the wonder of
learning", etc...

I think that the better you are at forgetting about
the label, "unschooler" ...

And remembering that this is your life ... Every
day is a new opportunity to be what you came to this
planet to be- Which is Completely up to you to decide
and act on-

The more the Joyful and Abundant Opportunities will
present themselves.

They are there. Don't be afraid to let go of your
plans and embrace Life as it happens.

: D
Melinda



=====
: D Melinda

__________________________________________________
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[email protected]

-=- Some days are
better-more enjoyable- than others. Some days you'd
like to get a re-do on. -=-

This is a concept I didn't grow up with myself, even the fantasy idea that
you could "rewind" a day.

My kids, though, play Harvest Moon, where at the end of the day you choose
whether to write in your diary or not. "Writing in the diary" is just saving
the game at that point. If you choose "no," then you go to sleep, wake up,
and it's the same day again. If you choose "yes" then the points you made or
lost, the livestock that you gained or lost, whatever happened "really
happened" and the game continues.

I'm sure they have thought sometimes of not saving one of their real days.

Even with the fantasy switch in their heads, even though it doesn't work, I
bet it does sometimes make them more careful about their choices.

Sandra

writing4health

Lisa

My heart goes out to you and your daughter. I have been living with
Fibromyalgia since I was about her age. Unfortunately, I was 21
before I was diagnosed.

I think the main thing that keeps me going is that I WANT TO LIVE!
not just exist. So I continue doing everything that I want to do,
within my limitations. I often Thank God that I had developed it when
I was young, since I grew up learning to cope with it. I find that
people who develop it later in life have more difficulty adjusting in
the long run (as a general rule, everyone is different.)

I was the editor for the Canadian Fibromyalgia Society's newsletter
for two years before it lost it's funding and became defunct. If
there is anything I can help you with please feel free to contact me
off-line. I still have many back issues of the newsletter.

Have you read any of Devin Starlanyl's books?

Try to get your daughter as active as she is capable of. Immobility
of body and brain are detrimental to the sufferer of Fibromyalgia.
Also watch for signs of depression, as this is common with any
chronic illness.

Please feel free to contact me anytime.

Kathy

Lisa Breger

<<Most of us deal with some type of "issue" that impedes
us from living out our "perfect unschooler" vision. >>

I just imagined from so many of the posts that most days pass smoothly in other families.

Today, my 10 year old daughter, who never felt she measured up academically when I was that strict school at home mom, wrote a beautiful poem for her sister. Not that I'm looking for something so blatantly academic; I'm commenting on the fact that she felt good about herself and her accomplishment, and I learned that days, weeks, months can go by when I imagine days are wasted, and then this...a wonderful, heartfelt poem showing compassion and caring!

Lisa





[Non-text portions of this message have been removed]

Lisa Breger

<<Try to get your daughter as active as she is capable of. Immobility
of body and brain are detrimental to the sufferer of Fibromyalgia.
Also watch for signs of depression, as this is common with any
chronic illness.>>

I am so confused about this. She says she cannot get out of bed because it makes her hurt more, yet we keep getting advice to get her moving. I don't want to force her, or make her upset. Today I called the doc and asked for pain meds to give occasionally, when she has an appointment. Maybe this will help her try to get up.

Thanks for the help. You can email me off list lisa@... so I don't clog the list with fibro stuff.

Lisa






[Non-text portions of this message have been removed]

[email protected]

> I just imagined from so many of the posts that most days pass
> smoothly in other families.

The summer before my father died, when he was very ill and we were caring
for him at home, was anything but smooth. My son was eight and I also
had my three nieces here, nine, ten and thirteen.

There was rarely time, money or chance to go anywhere, but when we got an
hour, go we did. Walking, bike riding, just out for a soda. The oldest
girl didn't mind looking out for the younger kids, for short periods, and
would take them swimming, or over to the creek. We found a trampoline at
a garage sale and what a wonderful diversion that turned out to be. We
set up the tent in the back yard so anyone who couldn't stand to listen
to a sick person anymore could escape.
We took the small TV / VCR out there and a portable stereo. The kids
often ate their dinner out there. The girls are my husbands sister's
children, so they were not comfortable around my father. But Dylan would
read to him, tell stories, draw new pictures for him every few days. He
painted a garden on an old bed sheet and hung it on the wall, since my
dad couldn't get outside. My father was a gardener and Dylan would tell
him what was growing, which bugs were out, what was blooming.
We really tried to pay attention to what the kids needed and my husband
would take them to movies on the weekend, or out kite flying. We
worried that they were having a lousy time, but they came back the next
summer with fond memories and they'll be here again in four days. ( Oh
dear! )
Kids are so adaptable. If you don't despair and if you meet their needs
the best you can, they won't remember a horrible summer when their sister
was sick, they'll remember how cool it was to picnic in the back yard, or
stay up late with you watching video's. It really will work out ok.

There is a beautician here in town who will come to the home's of people
who are ill and give them make overs. Maybe your daughter would like
something like that? Maybe you're other children and/or extra kids from
the neighborhood would like to put on plays for her, or build puppets for
puppet shows? Dylan did a Bing Crosby show for my dad once, maybe your
daughter would like to see Madonna,(or whoever ) LIVE, in concert, if you
can find some Madonna clothes (yeah, like everyone has pointy boobs lying
around ). Or a rap concert! Rap lyrics are really fun. I don't know if
she's on a special diet, but maybe the other kids would like to make
interesting foods for her. I'm not sure how you make a Britney Spears
(sp?) --man I'm old -- cake, but I'll bet it's possible.

Hang in there.

Deb L

Lisa Breger

<<We set up the tent in the back yard>>
<<But Dylan would read to him, tell stories, draw new pictures for him every few days.>>
<<will come to the home's of people who are ill and give them make overs.>>
<<Maybe you're other children and/or extra kids from
the neighborhood would like to put on plays for her, or build puppets for
puppet shows? Dylan did a Bing Crosby show for my dad once, maybe your
daughter would like to see Madonna,>>

I'm saving all of these wonderful ideas to try as needed.

<<Kids are so adaptable. If you don't despair and if you meet their needs
the best you can, they won't remember a horrible summer when their sister
was sick, they'll remember how cool it was to picnic in the back yard, or
stay up late with you watching video's. It really will work out ok.>>

And this warm, comforting, and hopeful thought .

I am so touched by the response I got from my post, and the outpouring of support for a complete stranger.

Thanks so much!

Lisa



[Non-text portions of this message have been removed]

writing4health

--- In AlwaysLearning@y..., "Lisa Breger" <lisa@b...> wrote:
> I am so confused about this. She says she cannot get out of bed
because it makes her hurt more, yet we keep getting advice to get her
moving.


Lisa

One of the worst times for people with Fibro is getting up in the
morning. (or anytime after lying or sitting for extended periods).

When I was nineteen, I had to crawl into the bathroom in the
mornings, because I couldn't put any weight on my feet. Then I would
take a warm bath to get my circulation going and my muscles relaxed.

I still hate getting up in the morning. I need to brace myself up
against the wall and hobble around. However, it is very important
that I do get up.

Try to encourage her to focus on other things besides the pain. I
know it is very hard, because the pain is overwhelming. Let her know
that this is only one aspect of her. It does not define her.

The first few months after onset can be the most difficult because no
one can understand the level of pain she is suffering, and she can
feel so helpless. With any chronic illness, there is a grieving
process that needs to be addressed. Encourage her to find her passion
for life again. It is a vital part of coping with any chronic
condition.

Good luck and my prayers are with you.

Kathy

Who feels like a truck ran over her every morning.

Lisa Hardiman

I am going to make a point to introduce myself next time. I barely have
enough time to read the emails unless they are interesting and this list
has a lot of interesting topics. Lisa

-----Original Message-----
From: ddzimlew@... [mailto:ddzimlew@...]
Sent: Friday, June 07, 2002 4:35 AM
To: [email protected]
Subject: Re: [AlwaysLearning] advice on life with an ill child


> Deb: Sorry, I wasn't paying attention to the egroup I was reading
> and
> now realize you are talking to another Lisa. Actually my kids had
> Mono
> too. It is a bummer, and takes a lot of time to get over it. Lisa

That's ok Lisa! I didn't know you were on this list! I'm so glad
you're
here.
I hope you're kids continue to feel better. Are they going to be up
for
the trip to Missoula? Not too far away now!

Deb L

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[Non-text portions of this message have been removed]

Sharon Rudd

> > I am so confused about this. She says she cannot
> get out of bed
> because it makes her hurt more, yet we keep getting
> advice to get her
> moving.
>
>
> Lisa
>
> One of the worst times for people with Fibro is
> getting up in the
> morning. (or anytime after lying or sitting for
> extended periods).
............>
> I still hate getting up in the morning. I need to
> brace myself up
> against the wall and hobble around. However, it is
> very important
> that I do get up.
...................
> Good luck and my prayers are with you.
>
> Kathy
>
> Who feels like a truck ran over her every morning.
>>>>>>>>>>>>>>>>>>>>
Me too.....only I have MS. Shyrley has MS, too.

I usually use my walker to pull myself from bed.
Sometimes I avoid going to bed so that I don't have to
get up!! But I don't recommend :-) The pain barrier
is really hard to break! However, often it DOES get
better after an hour or so...after I get distracted
from myself....for me that is the best way to deal
with chronic pain...to remove yourself from it as much
as you can. Think about other things, other people,
ideas outside of ones own body. Doing, thinking,
creating, laughing.......and yes, a pain med to help
over a hump, because sometimes the pain is too
demanding to even attempt to ignore and there are
things to be done anyway. Like living. :-) And
everybody else has their lives, too.

Chronic pain uses up the serotin and causes stress
hormones to be released and some other unfortunate
stuff too. If the depression evolves too far, it can
be as debilitating as physical pain. And a body get
trapped by inactivity.

I don't know your daughter or the particulars of her
illness, but if your healers (docs, holistic, or
whoever) say that she won't actually be damaged by
activity....they she NEEDS to be as active as she can.

It is so much easier to keep muscle tone to to have to
acquire it.

And you, Mama, how are you holding up? Do you ever
get to sleep, yourself? Or read a book for the fun of
it? Is there any time left to take care of yourself?

Sharon of the Swamp







__________________________________________________
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup
http://fifaworldcup.yahoo.com

Tia Leschke

>--- In AlwaysLearning@y..., "Lisa Breger" <lisa@b...> wrote:
> > I am so confused about this. She says she cannot get out of bed
>because it makes her hurt more, yet we keep getting advice to get her
>moving.

It can be really hard to find the balance. (I'm still working on it.) It
*is* important to move, but it's also important to listen to your
body. For your daughter, it might start out as simple exercises done in
bed, *very* gently and gradually. It might start, as I think you said,
with just getting out of bed and spending some time in the family room each
day. It might mean walking up and down the hall once before settling on
the couch. Then after a week or so, it might mean twice up and down the
hall.
When I was first diagnosed, I started using the rebounder. I didn't
actually jump. I still don't. I just genly bounced on it for several
minutes. I gradually increased the time until I could do 15 or 20
minutes. Then I hit the wall. That's all I can do. The distance I can
walk doesn't change either, even when I walk every day. She'll have to
find her personal wall.
I've found for myself that I can accomplish quite a bit if I vary my
activities and space the physical work throughout the day. It's hard to
get a feel for that at first. This spring I was trying to beat the weeds
to the strawberries. (Actually I was trying to find them among the weeds
before they finished blooming.) I would work till I was tired and then
push it a little longer. Then I was completely wiped and in pain for the
day. That would take maybe 30 minutes. Lately I've been quitting
gardening or housework sooner, at the first sign of tiredness. I'm finding
that doing it that way lets me put in 3 or 4 sessions in a day. I also am
unable to think clearly for more than a couple of hours at a time. So I
alternate short (15-20 minutes) of activity with an hour or two at the
computer and/or practising my instruments. It seems to be working, and I'm
getting more accomplished than I have in years.
You have to be especially careful of exercise if the diagnosis is or could
be chronic fatigue syndrome as well as fibro. Many people with CFS are
exercise-intolerant, and even a little too much can send them into a major
flare. Your daughter really needs to learn how to listen to her own
body. You can help by gently nudging her to try the gentlest forms of
exercise and find her own limits, then keep gently pushing them.
Tia, who also feels like a truck ran over her in the morning, and when she
gets up out of a chair



No one can make you feel inferior without your consent.
Eleanor Roosevelt
*********************************************
Tia Leschke
leschke@...
On Vancouver Island

Jon and Rue Kream

>>>> if your healers (docs, holistic, or
whoever) say that she won't actually be damaged by
activity....they she NEEDS to be as active as she can.


A person with fms can suffer for days or even weeks if they push themselves
too hard for one afternoon. Since it affects different people in such
drastically different ways it is really important for the person who has the
fms to learn to gauge how much she can do at any given moment. Of course,
that's something that can only be learned over time, and by listening to the
signals that her body sends her. For me, personally, if I push through my
"pain barrier" I end up not sleeping *at all* for up to a week, my word
recall abilities drop, every thing I pick up drops, my pain level
skyrockets, and I spend the next week or two trying to get back to "normal".
I'm much better off stopping before I reach that point. It probably took me
2 years to figure out where that point is for me.

So, yes, she should be as active as she *can*, but I certainly wouldn't tell
her to push through her pain. ~Rue


[Non-text portions of this message have been removed]

Sharon Rudd

. I also am
> unable to think clearly for more than a couple of
> hours at a time. So I
> alternate short (15-20 minutes) of activity with an
> hour or two at the
> computer and/or practising my instruments.

Computer is your re-coup time, Tia? You seem to be
thinking VERY clearly whenever you post.....you don't
loose your compassion either...

Sharon of the Swamp

__________________________________________________
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Sharon Rudd

> So, yes, she should be as active as she *can*, but I
> certainly wouldn't tell
> her to push through her pain. ~Rue

Seems that I was encouraging you to push too hard to
overcome that initial inertia. I'm sorry.

I didn't mean do jumping jacks....I meant, learn how
to roll-over with minimal discomfort....as there seems
to be no way to avoid discomfort all together....and
get positioned so she can watch cartoons or Mickey
Blue Eyes or Maverick or ? pet the cat, cuddle the 2
year old, maybe even read to the little one after a
while. Hold a beverage to sip on. That is the pain
barrier I meant. The one that is so bad you feel you
can't get up, even though you know you muscles should
work, if you can just figure out HOW.

You are all in my prayers.
Thank you for all that you have done
Sharon of the Swamp


__________________________________________________
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Yahoo! - Official partner of 2002 FIFA World Cup
http://fifaworldcup.yahoo.com

Jon and Rue Kream

Ooops - I'm sorry, Sharon if it sounded like I thought you were encouraging
jumping jacks. I meant to add to your post, not dispute it! Email sucks :)
~Rue
-----Original Message-----
From: Sharon Rudd [mailto:bearspawprint@...]
Sent: Sunday, June 09, 2002 6:18 PM
To: [email protected]
Subject: RE: [AlwaysLearning] Re: Living with Fibromyalgia


> So, yes, she should be as active as she *can*, but I
> certainly wouldn't tell
> her to push through her pain. ~Rue

Seems that I was encouraging you to push too hard to
overcome that initial inertia. I'm sorry.

I didn't mean do jumping jacks....I meant, learn how
to roll-over with minimal discomfort....as there seems
to be no way to avoid discomfort all together....and
get positioned so she can watch cartoons or Mickey
Blue Eyes or Maverick or ? pet the cat, cuddle the 2
year old, maybe even read to the little one after a
while. Hold a beverage to sip on. That is the pain
barrier I meant. The one that is so bad you feel you
can't get up, even though you know you muscles should
work, if you can just figure out HOW.

You are all in my prayers.
Thank you for all that you have done
Sharon of the Swamp


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[Non-text portions of this message have been removed]

Sharon Rudd

Oh Rue, you certainly didn't say anything that needed
apologizing for! Thank you for be gentle with my
feelings too...thank you.

I love email. I would never have had contact with ANY
of you without it. Just a hermit out here in the
woods :-) I'm GLAD when my posts are corrected, when
mistaken or poorly worded, or enhanced, added to,
clarified, or best of all....when my posts actually
contribute something :-) to a discussion.

So. Thank you again for clarifying....it was needed.
Please don't be afraid to do that whenever you see the
need. My feelings certainly won't be hurt.

I am experiencing language deficits. Drives me nuts
(enough to be noticed beyond my normal eccentricity).
Oh well. I do tend to run on.

I am SO grateful that my older children didn't have to
experience fibromylagia or MS or CFS or anything like
it as children. Knock on wood. Roy is only 8.
That would be MUCH harder than being ill oneself. I
had friends who lost children to terminal illness or
accidents. Those Mama's suffered, in their health,
much more than I ever do. My own worst times are when
I have to tell Roy, that I just can't do it....I feel
so ashamed then, and I pray, inside, that Roy learns
compassion rather than feeling deprived. Though I fear
it is both.

Anyway. Thanks.
Sharon of the Swamp





> Ooops - I'm sorry, Sharon if it sounded like I
> thought you were encouraging
> jumping jacks. I meant to add to your post, not
> dispute it! Email sucks :)
> ~Rue


__________________________________________________
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup
http://fifaworldcup.yahoo.com

[email protected]

In a message dated 6/9/02 7:50:13 PM Central Daylight Time,
bearspawprint@... writes:


> My own worst times are when
> I have to tell Roy, that I just can't do it....I feel
> so ashamed then, and I pray, inside, that Roy learns
> compassion rather than feeling deprived. Though I fear
> it is both.


Sharon,
I have long-term health problems due to a neurological trauma. My symptoms
include fatigue, cognitive/memory problems, and chronic, severe pain, among
other things. I can relate to everything you have said. I hate having to
explain to the kids why mama can't do something they want me to do. They
rush and tumble over themselves to reassure me that "that's okay, mom -
really!" Those sweet little reassurances that they "don't mind" make me feel
worse than anything! On one hand I admire their compassion and patience. On
the other hand, I cringe to think about their disappointment and worry. I'm
glad this topic has come up on the list.
pax.
Athena


[Non-text portions of this message have been removed]

Tia Leschke

>
>
>Computer is your re-coup time, Tia? You seem to be
>thinking VERY clearly whenever you post.....you don't
>loose your compassion either...

Thanks Sharon. What you might not have noticed is that I mostly just read
posts when I'm resting. I answer or comment on the easy stuff. Things I
want to think about before answering get saved for morning, when I can
think most clearly. That's also when I do my writing work, though I've
been pretty unmotivated for that lately. (might have something to do with
being caught up in Jean Auel's latest book - grin)
Tia

No one can make you feel inferior without your consent.
Eleanor Roosevelt
*********************************************
Tia Leschke
leschke@...
On Vancouver Island

Sharon Rudd

something to do with
> being caught up in Jean Auel's latest book - grin)

Mine didn't arrive yet, but I haven't been not he
mailbox yet. DH adopted daughter's daughter (feet,
shoes) is named Ayla. I gave the (other) books to
Wanda (the Mama) years ago...who knew?

Sharon of the Swamp


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Yahoo! - Official partner of 2002 FIFA World Cup
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Dana Matt

I have enjoyed the conversation on Fibro. I was
wondering if anyone on this list is dealing with a
child with epilepsy. There was so much firbro support
I thought I might luck out ;) My 9 yo daughter,
Lauren, has had epilepsy for about a year and a half.

Dana
Montana Mama

__________________________________________________
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup
http://fifaworldcup.yahoo.com

[email protected]

In a message dated 6/11/02 12:30:36 PM Central Daylight Time,
hoffmanwilson@... writes:


> was
> wondering if anyone on this list is dealing with a
> child with epilepsy. There was so much firbro support
> I thought I might luck out ;)

Well, none of my children have epilepsy, but I do have a seizure disorder.
My son also takes anti-seizure drugs (for a different purpose). So I do have
a pretty good understanding about how seizure disorder, and the meds used to
treat it, can affect one's life. I'll be happy to tell you anything I know!


pax.
Athena


[Non-text portions of this message have been removed]