Re: aggressive resting

[Guest guest]

This seems to me an amazing statement. I wonder how many PWC's feel this

way? To actually be willing to take something with an 80% chance of dying,

for the 20% chance to get better. Even at my worst, I have never felt that

way.. But in honesty I was never in a lot of pain or incredible sick for a

very long time without a break. I could see how some other people might be

worse and for longer, and never get breaks, and it would really get to them.

I simply find too much enjoyment in life, even for fleeting moments. Of

course I had to train myself to see the joy in little things. I also see

how much progress has been made on this illness in 5 years, and I have

confidence that I will eventually get better.

Doris

----- Original Message -----

From: " " <moores@...>

> I am sorry but I do not remember name well. But the concept of aggressive

resting what coined by one respondent in term of recovering form a crash. I

hate to admit it but it seems to be a necessary evil. Right now I can

function for 4 or 5 hours a day. So if I have medical test, that and eating

make up my day. And I spend the rest of the day on the couch, little radio,

books on tape, and a little TV. If I want to read some intensely that comes

out of my 4 or 5 hours. I much take 1 mg of Klonopin to keep me on the couch

other wise I would be to active. When I get feeling better I can use a

relatively intense book on tape.

>

> It is a hell of a way to live, and if some one gave me a pill and said

there

> is a 20% chance it will cure you and an 80% chance it will kill you I

would

> take it. But no one can give me that pill.

[Guest guest]

I know many PWCs here in the UK who belong to a severely affected group

who feel like this. I think you have to experience the illness at its

most vicious to understand it. I found it worrying that I felt like this

after 8 months in bed back in '96 - and I have two young children. Now I

am up and about the house a few hours a day I find the edge taken off

slightly.

hayley

>

>This seems to me an amazing statement. I wonder how many PWC's feel this

>way? To actually be willing to take something with an 80% chance of dying,

>for the 20% chance to get better.

[Guest guest]

If you've been sick for 22 years and it's the progressive form of this

disease you would consider taking that pill. Your life is being snatched

from you, a little bit more every week...month...year...you can do less and

less. You aren't debilitated, not that way people talk about, because you

keep doing things that force you to move some and keep those muscles

working, but it doesn't help. The doctors don't seem to want to look into

your illness. They keep dropping the " syndrome " from your diagnosis, out of

ignorance and your nervous system and endocrine symptoms completely baffle

them. You may see a specialist that says something and six months later they

recant what they said and say something different. What I have I learned

from this? I need to get a tape-recorder to make sure that my husband and I

aren't the ones that are making the mistakes. It's hard for me to think that

both of us got the wrong message from my endocrinologist..but he did an

about face and now says he didn't say the things we both heard him say. This

is not the first time. If you don't have the money to travel to good doctors

in other states, and the ones in your state are incompetent to even handle

things that are better defined than what you have, you realize you need to

learn as much as you can yourself. If you start learning too much, your

psychiatrist who always " seemed " to be " on your side " suddenly thinks you

must be spending too much time " learning " about your symptoms and you aren't

spending enough time " enjoying " your hobbies. Good grief, what little time

you have to do things are spend on your hobbies because you love them. You

don't devote a lot of time on studying what's wrong with you because you

can't sit up that long so you sub to lists like this one and Co-cure and

others that tell you what's going on in the world of CFIDS. You don't even

have time to read all the posts, you skip many of them. (and they think you

know too much!) You do look up sites on the thyroid because your

endocrinologist appears to be lying about exactly what the total T3 test

measures. You also spend a bit of time bookmarking ANS sites since you seem

to have problems with gastric emptying once again since you discontinued

(slowly) one of the drugs that was helping you with all of your ANS problems

(because that same Psychiatrist had strange ideas of why you were taking it

and she seems to have forgotten the reason she gave it to you in the first

place!) You find that your ANS symptoms, OI, NMH, POTS and the Gastric

emptying problems as well as sweating and other problems is much worse than

you thought, since that drug was masking them or treating them, depending on

how you look at it, pretty well. (this is why you look into ANS sites, but

you bookmark them and can't stay there and read them, you print out what you

can but your printer dies (Soft sigh)). The psychiatrist says that life

problems (that are not even a factor anymore, in this case my Son's

problems) are keeping your disease going and you need to meditate and let go

of the stress from those problems. You can't explain that you got ill when

your son was only 5 and at that time he had no problems and that you've been

ill for 22 years and the illness has not always correlated with times of

severe stress. You know that stress..good or bad stress..can make you feel

worse for a while but they aren't always involved with deep crashes. You are

the one with experience with whatever disease you have, no one else really

understands them, not even those affected similarly..we are all different!

You are the best one to judge just how sick you are. If that little quiet

voice tells you that you are dying, you probably are. This doesn't mean you

will die..you may somehow get some help that may turn around whatever

problem is causing you to feel that little quiet voice. The little voice is

just our bodies way of warning us when something is in a critical route to

failure. Every time I've had that voice..I've been right and I've nearly

died. The doctors have always been amazed when they find the reason for that

" feeling " of doom...and they are always apologetic and have no idea why they

missed the problem..their " tests " usually show the problem...but they didn't

on you.

You live on BECAUSE you have the will to live. If you didn't, you would no

longer be here. Not because of suicide...but because you gave up and stopped

looking for any answers..stopped praying for them..stopped caring. This is

why you may consider taking that pill that has bad odds. People with cancer

and other terminal diseases take those odds all the time. If you sense you

are dying...you will take those odds too.

If your life is shrinking, that box or envelope..whatever you want to call

it, is getting smaller...you will take risks if you want to live. At ten

years into this disease I thought the questionnaire asking whether I could

handle normal daily hygiene was ridiculous. I thought I'd have to be dying

before I couldn't brush my teeth, wash my hair, clean myself..how could that

be associated with what I had? I know how now. Now I'd have to answer that

same question quite differently. My envelope is very small. Pushing it

requires very little effort. Having a bowel movement may even push it some

days. And you ask how anyone can be that desperate??

[Guest guest]

Doris, Steve can answer for himself, but I have been on lists with

him for ~3+ years now and his situation is that nothing is working

for him. He has tried virtually everything; GH, B-12, whey

nerontin, you name it. So I think he feels a lot of frustration

and was used to functioning at a very high level. I believe he

has an advanced degree in sociology (or something), and I can relate

to his statement and would probably feel the same way if I were in

his position. That being said, I think he is pursuing the right

course in trying everything, and if he can stick it out a while

longer, he will find a treatment that helps or the medical community

will come up with an answer for us.

Mike

In @y..., " Doris Brown " <dorisbrown9@y...> wrote:

> This seems to me an amazing statement. I wonder how many PWC's

feel this

> way? To actually be willing to take something with an 80% chance

of dying,

> for the 20% chance to get better. Even at my worst, I have never

[Guest guest]

,

Amen.

You are a beautiful writer; your deep soul and difficult life shine through

in your messages. We can all learn from your experience. Thank you.

> Re: aggressive resting

>

>

> If you've been sick for 22 years . . .

[Guest guest]

I hope nobody thinks I meant anything negative about what Steve said. I

truly am filled with sorrow for those of you who are at the end of your

rope. It is just amazing to me that even with this myself, I am constantly

surprised by how bad it can get for some people. By how much difference

there is between us, and even from time to time for the same person. If I

have had CFS for several years and am still caught offguard by the

desparation of people that are just getting worse and worse with no end in

sight. And I know more about CFS than anybody else I know. So it is no

surprise CFS is so misunderstood by the general population, by doctors, by

the media.

Tying it back to this group... I suppose this might be too much to ask. But

it sure would be nice if we could know a person's detailed situation when we

hear whether something worked or didn't work for them. Maybe we could post

all the " medical bios " on a website, or people could add it to their

signature files so it prints at the bottom of their messages. I know this

is probably a hopeless request. But it seems that at some point we are

going to have to categorize ourselves in order to understand what is working

for whom, so we can try the appropriate things.

Thanks,

Doris

[Guest guest]

In a message dated 6/6/02 12:45:44 PM Mountain Daylight Time,

dorisbrown9@... writes:

> all the " medical bios " on a website, or people could add it to their

> signature files so it prints at the bottom of their messages. I know this

> is probably a hopeless request. But it seems that at some point we are

> going to have to categorize ourselves in order to understand what is

working

> for whom, so we can try the appropriate things.

Doris;

I have been thinking along similar lines. In some way organizing our

informationand communications better.

I am not sure what you would want in a medical bio. You mean a history of the

course of our disease and what helped and what hindered? I have been sick for

so long it would be long, but I would be willing to give it a crack.

But I think more than that is needed. I get so sad when I hear others being

told, as I used to be, " go look it up in the archives. "

Giving people the benefit of a doubt, I have to believe that is the best

response available from that person at that time, but the archives search is

so limited in the way it functions.

Praise God, since I got on b12, my mind is somewhere in the ball park, but

after a brief period of participation in the past, I had to get off and stay

off, because it was still so confusing and disorganized. And I couldn't

navigate from message to message when I did search.

I think we need to make better use of our ability t create files online for

all to see. Going back thru the archives would probably be undoable, but

maybe we could begin a sytem- and I would welcome other minds elaborating on

or critiquing this- where topic files would be set up as topics arose, and

messages that had factual info-as opposed to theory or speculation-would be

stored there. (May be the people who are able to theorize or those who want

to try to understand them, could have their own files.)

As to who is to create these files or see that things got filed in them- any

ideas? If enough people wanted to try to support an effort like this on a

shared basis it shouldn't place to big a burden on others.

Just a thought! (Guess I am a libriarian at heart) :-)

Adrienne

[Guest guest]

Doris,

Since this is the type of thing that Dr. Gupta (spelling?) says needs to be

done..categorize the symptoms before trials or studies are done to get

accurate results in these studies, I think what you say has a lot of merit.

To be honest, in reading posts, I learned long ago that a little knowlege is

a dangerous thing. When I was going through nursing school, 30 years ago,

there was always the joke that people armed with a little knowlege on

disease tend to become " experts " overnight. (Now, I'm not at all commenting

on your knowlege..this isn't meant for you, actually..but I've been reading

through some posts and I see some folks on this list as well as any other

CFIDS/ME list making statements and simplifying diagnosis too much so that's

where I'm coming from on this statement.) If you start looking at any

autoimmune or immune type disease or disease of the brain for that matter,

you will see a great number of overlapping symptoms. It's very important to

know a persons lenghth of illness, the symptoms they experience and if a

treatment works what it worked for before applying any treatment to everyone

who has the illness in question. I do believe that if CFIDS has one

cause..then the symptoms that you have depend on your " bug " load, or

whatever your body isn't getting rid of chemicallly...or other factors.

Personally, my feelings are that there are many diseases yet to be named

under the CFIDS umbrella and we were all put there because the medical

people had no other place to put us. For some of us, it's an ill fit. Not

everyone is going to progress to having the type of CFIDS that I have, but

some will. Some will be better in a few years and will never have another

symptom. Do we have the same initiating factors..probably not. Do we have

the same disease...probably not. We've just been put in the same category.

So to find what treatments work best for us, individually, we really have to

talk about what clusters of symptoms we have and what was helped.

Just my thoughts..

[Guest guest]

May I suggest when those interested feel able enough and have some time to

take a look at the organization of site that is for melanoma patients. The

site was developed in memory of a sister who died of melanoma as a way to

help patients find information and treatment and to learn from others

experiences (like we do). On the site, they have a place where you can click

to member history and if the member choses to they can put the history and

present circumstance of their medical history.

Just a thought......I think the organization of the site is excellent. The

web address is:

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