validation

[Guest guest]

Hello Ladies (and any lurking gentlemen):

I haven't had much to post lately, but I'm still reading. You all just keep

validating me - especially Kathleen, Carol and Barb - we seem to have very

similar nadas.

I have been out of contact with mine since Christmas, except for 2 or 3 brief

calls. I feel a great sense of peace. I really don't have any guilt, mostly

because of the validation I get here. For years, FOG ruled my life, with nada

and ex-husband.

My son asked me for a few bucks to hold him over until payday. Not a big deal

for my beloved, only child. That triggered a buried nada memory. The old bat

wouldn't give me a nickel when I was young. I found out much later that she had

collected welfare for me for years. Kept every freakin' cent for herself and I

had to work at some really horrible jobs to pay for my own clothes and food.

And this is when I was still a teenager! She also took the inheritance my

grandma left me and cashed in an insurance policy she had on me since I was born

- kept every nickel of that, too. And when she inherited a large chunk of money

($20,000 about 30 years ago) the witch wouldn't even pay pack the money my

grandma had left me.

Thanks to this group, I can allow myself to remember these things, feel anger

about them and no guilt about being nada-less. Its hard to say that you own

mother is a vicious witch because most people would be horrified - not this

group! For every nada story I have, someone on the list can top it.

Barbara

---------------------------------

[Guest guest]

Very well put Aylwin. About 7 years ago, I printed out materials I found online

that you could use to inform relatives/friends of ME/FM. I really thought I was

doing something good by educating them to what I go thru in my 'new' life. I

should never have expended the time, energy or wasted the ink and paper and

stamps!

[Guest guest]

I think people often like to " blame the victim " (victim of illness,

crime, bad fortune, whatever) because if YOU did something to cause

your illness, then it won't happen to THEM, since THEY will not do

whatever it is YOU did! They are afraid that " it " could randomly

happen to them...and they are afraid of being powerless to avoid it.

Blaming the victim is often easier than facing reality, and the blamer

can then remain unresponsible for both empathy and activism. (In other

words, they can do nothing, because it's all your fault!).

[Guest guest]

Aylwin wrote: There are LOT of people here with ME, MCS etc who come

here to heal, but there is SO much New Age attitude of you brought it

on yourself, you " chose this "

I am so glad to hear someone else that's sick of this. I am all into

empowerment, not being a victim, but I have been keenly aware of New

Age-style books, classes, groups, etc. for over 20 years and used to

try to buy into a lot of it, but it just ended up making me feel

guiltier because their belief was the same as the mainstream culture -

that if you want something badly enough, you will make it happen -

B.S.!!!! Even my current psychotherapist uses the word " choice " way

too much. I would be much worse if I hadn't fought so hard on my

recovery all these years, so no one can ever say that I just sit around

feeling sorry for myself, but instead of all of this BS talk that you

can have anything that you set your mind to, we should all instead

focus on the Serenity Prayer to change the things we can, and accept

the things we can't. I ended a friendship about 10 days ago (and feel

good about it) with someone I really liked that I had met at a New

Age-style class - 3 intensive weekends training you in Quantum Energy

Transformation and everyone in that class believed that you could do

anything you wanted to do. I tried to stifle myself but was sometimes

the trouble maker in the class -- you mean to say that if I wanted to

be the President of the US tomorrow, that I could make it happen if I

really tried? Anyway, this friend of mine from that class sent me this

email about 10 days ago telling me to watch Oprah that day. I watched

the first few minutes before turning it off in disgust. It was about

some book and DVD called " The Secret " or something that taught you how

you can achieve anything you want to achieve. It angers me even

further with these types of things when they usually talk about how

wealthy you can become - though we all know that becoming rich does not

make one instantly happy. Then they used really weak examples to prove

that " The Secret " worked. One of them was author Jack Canfield who

wrote " Chicken Soup for the Soul. " They mentioned that he had been

really broke or poor or something a year before the success of the book

and now he's wealthy. What does that prove? There are lots of

examples of people's whose luck has changed in both good ways and bad,

both by their own efforts and from luck. It was a freeing, healthy

thing for me to release that friendship - knowing this person will

always believe that I could heal completely if only I put my mind to

it. After all of these years, I have finally learned that it's

healthiest for me to stay away from these people because they are never

going to change their minds unless they came down with a chronic

illness.

Vicki

[Guest guest]

I, sadly, ran into the same problem with my church.

I once told my pastor that I don't think I read the same bible, in my bible

the apostles suffered a great deal and were not rich, of course that went

over real well. It wasn't long before there was a reason to get me out. Which

is another sad story that doesn't belong here.

In a message dated 3/2/2007 9:26:49 AM Pacific Standard Time,

taylormcnally@... writes:

Aylwin wrote: There are LOT of people here with ME, MCS etc who come

here to heal, but there is SO much New Age attitude of you brought it

on yourself, you " chose this "

I am so glad to hear someone else that's sick of this. I am all into

empowerment, not being a victim, but I have been keenly aware of New

Age-style books, classes, groups, etc. for over 20 years and used to

try to buy into a lot of it, but it just ended up making me feel

guiltier because their belief was the same as the mainstream culture

[Guest guest]

Hi Aylwin,

I'm with you... trying to just live with this as best as I can, and

improve the quality of my life. I was on the ever-elusive trail of

a " diagnosis " and finally just put that aside (for now).

Have you heard about this person Judith Orloff, M.D.?

Here is a link to a brief article about her:

http://www.drweil.com/drw/u/id/ART02754

She writes about people who are " intuitive empaths " . People who have

a strong intuition and intense ability to pick up on other people's

energy (usually negative energy). She claims that many people who

develop FM or CFS are intuitive empaths. Their taking in of other

people's negative energy can create pain and draining of energy.

Of particular interest to me are her references to large crowds of

people and how this can sap one's energy. I have always been a

highly intuitive person, and have great difficulty being around large

groups of people and surviving the event without " crashing " .

Airplanes are the worst, with the confined space, and everyone being

stressed out, nervous and frightened. It made a great deal of sense

to me. Enough so that I went out and bought her book right away lol.

K2

>

>

> Now I am into management and stabilising, not putting all my energy

into a " cure " but trying to optimize and find a way to live that

gives a tetch of the ever elusive " quality of life " .

>

[Guest guest]

Hi K2, yes her article is quite informative, you realize that this basically

my profession, al lot of what she says is accurate as far as it goes. Energy

and intuition, and the fundamentalist ideas about attraction and intention

are something else. A fascinating topic for sure. Aylwin

[Guest guest]

I have given up on trying to please people or making them understand. I am

also very intuitive scary at times. Sometimes I get these feelings of

something that is going to happen but don't know what. I started to write these

things down. Used to think it was anxiety but after certain things happened I

started a journal. Interesting theory about energy from other people. I do

believe that when you are around up beat positive people it does help all thou

I do

envy healthy people.

Blair

[Guest guest]

I wonder if your friend would say the same thing if you had cancer? Positive

thinking is great, but not an answer for illness.

English

Re:validation

Aylwin wrote: There are LOT of people here with ME, MCS etc who come

here to heal, but there is SO much New Age attitude of you brought it

on yourself, you " chose this "

[Guest guest]

I must admit, I'm with you Vicki.............I DO believe in positive thinking,

being optimistic, and always trying to see the good side,the positives. But I

don't believe we can magically make ourselves " healthy again " by just positivie

thinking. If that were true, I would be cured. The Serenity Prayer is more my

cup of tea.............We DO have to accept our new lives, that is NOT to say we

are giving up, or bowing down to it, but respecting the changes that have

happened and adjusting to our " new lives " accordingly.

I still have hope that a cause and/or cure will be found. But I also know,

from past experiece, that just becuz I WANT to be somewhere, or WANT to do

something, and I make every effort to make it happen, does NOT make it possible.

That's when I have to accept the disappointment, respect my body, and move

forward from there.

I do like the IDEA of " The Secret " , but I don't agree with it

100%..........there's my 2 cents worth. Just an opinion

STL Jane

Vicki -McNally wrote:

Aylwin wrote: There are LOT of people here with ME, MCS etc who come

here to heal, but there is SO much New Age attitude of you brought it

on yourself, you " chose this "

[Guest guest]

Hi Vicki, Jane, , Blair, , and everyone.Well I believe in positive

thinking too! But there is a balance point. denying anything sad or negative

exists is also ridiculous.I even believe in the right use of intention (note

I said right use, and not power) to get from A to B - I would not have

survived, nor been able to accomplish the things I have with and despite

this disease, were it not for the setting of strong intention. However,

despite all that, life happens! Good and bad, and NO one is exempt. I think

a driving force of any fundamentalism is fear, and a desire for control and

simple answers in a complex and mysterious world. (Oh how very

philosophical.:-)

The sad thing is, when these people impose their judgements and

recommendations onto me, they are not being positive at all! Not only do I

find it disrespectful, but they are flinging negative energy around while

they do it! I would far rather joke around and have a laugh about the

ridiculousness of it all, and I can do that with the few but precious good

friends I have who do respect and accept me just as I am, brain farts and

knee braces or whatever. And if I need a shoulder to cry on or an ear to

rant to, that's OK too. Aylwin

[Guest guest]

Hi Blair, the funny thing is, the reason people often find it hard to

believe I'm ill is that I do present as very positive, upbeat, funny (yeah,

when I'm out, which is me at my best, they don't see me the rest of the

time!) - now I just say " that's my spirit inside that you see, not my body " !

I'm also working at not being so bloody perky-seeming all the time, it is

really a defense mechanism. Now when folks ask me how I am, I tell the

truth, but in a funny way. People get a good laugh and really identify with

it, not just saying " I'm great " when I'm so not. That way I get to be true

to myself but still not a bummer. Aylwin

Ps, don't be scared by the intuitive stuff, most folks are to one degree or

another. It's just not accepted or honoured in our culture, we don't get

classes at school! If you can, it would be interesting to ask elderly

relatives if they ever had dreams that came true etc. Sometimes a talent

runs in a family. Aylwin

[Guest guest]

Aylwin

Thanks for the info. When people ask how I am well depends on my mood.

Sometimes I just say same old same old. But then there are the really bad days

and

then I usually don't answer my phone. The most difficult part of having CFS

and Fibro is that I am divorced and so lonely for a great man in my life but

who would want me.

Blair

[Guest guest]

AMEN!..............Being positive and finding the humor in this condition we

suffer from, is a GODSEND! It can bring you out of your funk (as my mom would

say) and lighten your heart and mind about the whole thing! I am SO greatful to

have a good sense of humor and can share it with my family and closest friends.

My sense of humor got me thru my dad's battle with Alzheimers and it is getting

me thru this too.

I know the negative energy you are referring to, and I do try to eliminate as

much as possible. I do believe you draw to you what you put out there. You're

absolutely correct in that we all need that balance point. To be a realist is

probably the best route, to expect the best, but prepare for the worst!

God Bless you all and ,

STL Jane

Aylwin wrote: Hi Vicki,

Jane, , Blair, , and everyone.Well I believe in positive

thinking too! But there is a balance point. denying anything sad or negative

exists is also ridiculous.

[Guest guest]

Hi Blair, yes, it's hard to even think of romance like this.I'm beginning to

think that we need people like ourselves, someone ill also, who could

understand. I've tried the super-busy partner (thinking I could keep up,

with the bit left over from working) and just got put down for napping,

having food allergies, you name it. I know some people meet online, but as I

cannot afford $$$ or stamina wise to travel at all, it seems

counterproductive to put my energy there. Still one can hope, there's a

lovely story in Peggy Munson's book Stricken from the viewpoint of someone

who fell in love with an ME person. Like everything in this disease, it

doesn't pay to hold one's breath, though <grin>! Take care, Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of zazufl8@...

Sent: Tuesday, March 06, 2007 5:32 AM

To: CFAlliance

Subject: Re: validation

Aylwin

Thanks for the info. When people ask how I am well depends on my mood.

Sometimes I just say same old same old. But then there are the really bad

days and

then I usually don't answer my phone. The most difficult part of having CFS

and Fibro is that I am divorced and so lonely for a great man in my life but

[Guest guest]

Hi Jane, yes, back to the old Serenity prayer, accept what you can't change,

courage for what you can, the wisdom to know the difference.and keep

laughing, it's the best therapy of all. Aylwin

[Guest guest]

Hallelujah...I love it!!!! I am so so glad to hear someone else say this. Nobody

wants to be around someone who bellyaches all the time. I am all for having a

bad day coping and the occasional pity party every once and a while but when it

turns into weeks, months and years, forget it.

My sense of humor has gotten me through so much also and like you, I am

grateful. My sense of humor has provided me with hilarious memories. It got me

through 4 head surgeries and time spent bald at only 12 and 13 yrs. old. I can

still remember one kid calling me " Aunt Jamima " because I had a wrap on my bald

head. He said that they recognized me from the pancake bottle. Needless to say,

I took off my wrap and said, " Wrong bottle... I am actually Mr. Clean. " Can I

help you with any house work? " The kids around all laughed and I was never

laughed at again. I learned very early to laugh with them. After all, laugher

is the best medicine!

Jane Luft wrote:

AMEN!..............Being positive and finding the humor in this condition we

suffer from, is a GODSEND! It can bring you out of your funk (as my mom would

say) and lighten your heart and mind about the whole thing! I am SO greatful to

have a good sense of humor and can share it with my family and closest friends.

My sense of humor got me thru my dad's battle with Alzheimers and it is getting

me thru this too.

I know the negative energy you are referring to, and I do try to eliminate as

much as possible.

[Guest guest]

AMEN Aylwin!

Aylwin wrote: Hi Jane, yes,

back to the old Serenity prayer, accept what you can't change,

courage for what you can, the wisdom to know the difference.and keep

laughing, it's the best therapy of all. Aylwin

[Guest guest]

I don't bellyache at all. Never did when. They knew when I was having a bad

day. So I don't think you can generalize.

Blair

[Guest guest]

One of my friends at work met and is now engaged to a lady with CFS -

he loves her as she is, good days and bad days. He's always been

fairly active, but seems genuinely happy to adjust his activities to

her abilities - his sedentary hobbies have taken precedence over

things like hiking.

They're happy as clams, buying a house, planning a family - and are

on the same track about what they want from their future. He doesn't

seem the least bit fazed by it all, and prepared to take on whatever

the future might bring health-wise (and I was pretty blunt with a few

stories of what he might be in for!) So it definitely does happen!

Miriam

At 04:31 3/7/2007, you wrote:

>Hi Blair, yes, it's hard to even think of romance like this.I'm beginning to

>think that we need people like ourselves, someone ill also, who could

>understand. I've tried the super-busy partner (thinking I could keep up,

>with the bit left over from working) and just got put down for napping,

>having food allergies, you name it.

[Guest guest]

Hi everyone, I'm a new member to this list...or rather I'm new to getting the

e-mails. I'm so much in need of this group right now. I used to belong to a a

young persons with CFS group, but the participation sort of petered out. The

past year has been really wearing me down emotionally and physically. I used to

try to be an advocate for this disease. I thought it would be a good thing to

share what was happening to me with friends and family, or anyone else who was

curious. Eventually I was told very harshly that people don't want to hear it,

it's too depressing, I talk about it too much, and no one wants to spend time

with me because of this. There was also some bitterness over my recieving social

security, people saying behind my back that I was taking their retirement money

and didn't deserve it and other nasty things.

If 'mind over matter'/'thinking yourself better' worked I would have been well

8 years ago. When I say I can't do something it's not because I'm being

negative, I just know my limits and when to or not push them. What people tend

to see from me at a party is an energy level I have spent a week on the couch to

build up and will spend another week on it to recover. That is something people

don't see. I know I'm not a hypochondriac, and I hate that I feel like I have to

prove that to people all the time. I gotta say that my ability to trust people

has been pretty badly damaged lately.

I've also had to change doctors several times. The CFS doctor I was seeing lost

his business because he got decompression sickness scuba diving. The next doctor

put me on this really heavy treatment of antibiotics and supplements that my

body just could not tolerate. It got to a point where I was taking over 50 pills

a day (26 different types of things). I started having really bad stomach

problems (bloating, throwing up, nausea and dhiarea) and just had to stop taking

the treatment and stop eating a lot of foods. In the middle fo that I jumped

around GPs, some of whom I got a distinct impression thought that I was just a

hypochondriac.

Now I've made a move to Corvallis, OR. Even though I take on-line classes, I

wanted to be closer to Oregon State University. I don't know anyone (except my

neighbors whose cat plays outside with mine) and I really need a new doctor. The

guy who had me on the heavy treatment won't renew the few prescriptions that I'm

still taking (ambien and b-12 injections). Without them my CFS and sleep

disorder are much much worse. I'm in serious danger of failing my courses this

term becuase I don't know if I can get the last few weeks' work done and be

cognizant enough to take the final.

Does anyone know a good CFS/FMS doctor in this area?

Sorry my first post turned out so long and venty.

-Alia

[Guest guest]

It's AWESOME that you two have worked thru it and continue to do so. We are not

all the forutnate...........hang onto her ryotboi........she's a keeper!

STL Jane

ryot boi wrote:

When i got diagnosed with CFS in 2006, my partner finally started to

put 2 and 2 together regarding my waxing/waning energy levels, sleep

habits, etc. at first she went through some grief, but now has

adjusted. basically the finances and chores are the greatest

challenge, but we manage through the arguments and guilt, which is

less often now. we were together for 2 years before dx,

[Guest guest]

Hi Alia,

I was checking the message archives and saw your post. Welcome to the group and

I understand how important it is to find others for a sense of 'community' and

sometimes even a 'family'. I, too, am in the same boat and need this group for

those things.

I live in Eugene. I grew up in California, but raised my children mostly in

Florence, Oregon after my husband whom I met and married in Illinois moved us

there (long story, very confusing for now haha), and I moved to Eugene when my

kids were teenagers. I was divorced by then - he was an alcoholic and too

dangerous to stay with back then.

There are just no good doctors in Eugene whatsoever, but I know a good

alternative-care doctor who now has his office in Junction City. His name is

Gambee, M.D. Let me know if you need more help finding him or if you would

like to talk more about what he offers. I don't go to him much anymore because I

think he did all he could do. I have so many other health issues besides the CFS

for which there just aren't any treatments.

Hugs,

Dorie

Eugene, Oregon

Hi everyone, I'm a new member to this list...or rather I'm new to

getting the e-mails. I'm so much in need of this group right now. I

used to belong to a a young persons with CFS group, but the

participation sort of petered out. The past year has been really

wearing me down emotionally and physically. I used to try to be an

advocate for this disease. I thought it would be a good thing to

share what was happening to me with friends and family, or anyone

else who was curious. Eventually I was told very harshly that people

don't want to hear it, it's too depressing, I talk about it too much,

and no one wants to spend time with me because of this.

[Guest guest]

I've found two good doctors in the state of Oregon, my GP in Coos Bay,

and rheumatologist in Portland. Sorry to hear you haven't found any in

Eugene, though.

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