Re: Lying about CFS

[Guest guest]

Yes one gets " battle fatigue " I think, from constantly having to not only

have our lives and bodies blasted apart, but having to fight the good fight

relentlessly. I have been known to flat out lie when it wasn't important and

say " MS " , but mostly I just say " a neroimmune disease " these days. It's

easier and I don't have to waste my energy standing around (at the store or

whatever) explaining. Just tired of it. It's really too bad you had to have

surgery with docs that don't understand ME as these things impact on the ME

- anesthetic and the trauma of the surgery itself. I wish you a good

recovery and better days ahead. And hey, you don't have to lie here. This is

the place we can be ourselves. Take Care, Aylwin xox

[Guest guest]

I haven't lied, but I do opt for the Myalgic Encephlomyeltis explaination rather

than saying CFS. I find that ME sounds more serious than saying I have " chronic

fatigue " . I have also used the definition rather than the diagnosis when

telling people what is " wrong " with me. Instead of CFS, I say " I have something

wrong with me neurologically. My brain doesn't produce the proper chemicals

that are needed to function normally " . That one usually gets recognition and

understanding.

I certainly wouldn't feel bad about " lying " . However, I would pick something

a little closer to the truth lest your new friend feel like you were completely

misleading him/her. Saying you have a " neurological disease " is a good way to

put it and it's a kin to the truth.

jan_couture wrote:

I have fought this DD for over 25 years now. I have run support

groups, researched articles, tried to educate the general public and

nearly every doctor I have met..........and yet no one seems to " get

it " !! And I am so weary of " the looks " and of people saying " you look

great " ! Even my closest friends (of which I have precious few left)

and my family, have little understanding of how much I have missed due

[Guest guest]

I haven't lied, but I do opt for the Myalgic Encephlomyeltis explaination rather

than saying CFS. I find that ME sounds more serious than saying I have " chronic

fatigue " . I have also used the definition rather than the diagnosis when

telling people what is " wrong " with me. Instead of CFS, I say " I have something

wrong with me neurologically. My brain doesn't produce the proper chemicals

that are needed to function normally " . That one usually gets recognition and

understanding.

I certainly wouldn't feel bad about " lying " . However, I would pick something

a little closer to the truth lest your new friend feel like you were completely

misleading him/her. Saying you have a " neurological disease " is a good way to

put it and it's a kin to the truth.

jan_couture wrote:

I have fought this DD for over 25 years now. I have run support

groups, researched articles, tried to educate the general public and

nearly every doctor I have met..........and yet no one seems to " get

it " !! And I am so weary of " the looks " and of people saying " you look

great " ! Even my closest friends (of which I have precious few left)

and my family, have little understanding of how much I have missed due

[Guest guest]

Ach Jan, I really feel for you and what you had to do.

Good friends are hard to come by so keep them close.

Try not and tell to many lies as it always backfires.

I am lucky in a way that I have fantastic support for my son from my

family.

It's a fight to keep others understanding which I have been raising awareness

here in Belfast over a year.

Genuinely people don't understand the severity of the illness, I myself probably

didn't realise this until my 14yr old took ill and has been housebound 2yrs.

So Jan I know it's very hard but try and keep strong.

I would advise you to talk to your friend and tell her how you are feeling.

I hope this is some kind off help!!!

TC

Antoinette

[Guest guest]

Ach Jan, I really feel for you and what you had to do.

Good friends are hard to come by so keep them close.

Try not and tell to many lies as it always backfires.

I am lucky in a way that I have fantastic support for my son from my

family.

It's a fight to keep others understanding which I have been raising awareness

here in Belfast over a year.

Genuinely people don't understand the severity of the illness, I myself probably

didn't realise this until my 14yr old took ill and has been housebound 2yrs.

So Jan I know it's very hard but try and keep strong.

I would advise you to talk to your friend and tell her how you are feeling.

I hope this is some kind off help!!!

TC

Antoinette

[Guest guest]

Hi ,

I can relate to how you feel, there are many days that I can't take

showers, or much else. I am so tired, and no energy, or to much pain.

It is really degrading when someone visits and you don't want to get

near them cause you know you stink. What can ya do....

It seems to me that more and more folks are relizing that this

disease is real, and more or believing it is disabling.

I have a couple friends but I can never see them, never able to get

out, just talk on the phone now and then. or email.

It is very hard, but hang in there,the word is getting out more and

more.It is easier with folks you know for a long time, cause they saw

what you were and you weren't a slacker, so they see that something

is wrong, but with new folks it is harder. I can't blame you for

talling the lie, soemtines you need to make things simple.

Take care,

jeanette

[Guest guest]

Hi ,

I can relate to how you feel, there are many days that I can't take

showers, or much else. I am so tired, and no energy, or to much pain.

It is really degrading when someone visits and you don't want to get

near them cause you know you stink. What can ya do....

It seems to me that more and more folks are relizing that this

disease is real, and more or believing it is disabling.

I have a couple friends but I can never see them, never able to get

out, just talk on the phone now and then. or email.

It is very hard, but hang in there,the word is getting out more and

more.It is easier with folks you know for a long time, cause they saw

what you were and you weren't a slacker, so they see that something

is wrong, but with new folks it is harder. I can't blame you for

talling the lie, soemtines you need to make things simple.

Take care,

jeanette

[Guest guest]

Hi Jan!

I've never lied about CFS. I was diagnosed with it about 15 years ago and it

went into remission until a couple years ago when I was diagnosed with

Fibromyalgia. I DO have a heart problem and I think it has more credibility

than CFS. It's wrong that there's such a stigma attached to CFS and FMS that

sufferers feel like they have to stretch the truth a bit. Personally I've told

friends, etc. about the FMS and a few close friends about the CFS. My

supervisor and a few coworkers know as well. It's not something I tell everyone

but I don't hide it either. It seems there's a little less controversy over FMS

but still people who don't believe it exists but I've not run into anyone who

doubts it. Of course, they've seen my pain and fatigue. If it was me, I think

I'd tell your friend the truth. Maybe you will feel more comfortable doing that

once you get to know them better and learn to trust them. Just my opinion, but

I'd rather be honest with my friends and risk them

not believing me than lying about an important part of my life. If a person

really is a good friend, then they'll support you no matter what. If they don't

then they aren't worth the bother.

Hugs,

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

Well I can relate to that. I don't have CFS but I have Fibro. I have

limited energy and because I try to take as little pain meds as possible I'm

often too sore to do a lot. My energy has to be saved for working because

if I don't work I don't eat etc. So my house is a disaster area. I know

people don't really understand because I don't look like there's anything

wrong with me. So they just think I'm a slob. So I don't have people over.

I don't have energy to go visit anyone or hang out after work so I spend

alot of time with my neighbours sitting in the courtyard at night and that's

about it. I have online friends...most of whom are fellow sufferers with

chronic illnesses and I have one Christian Woman's group that I belong to

that are very supportive. Some days my computer is my lifeline because that

s the only time I can " talk " to people that understand what I'm going

through.

Bel

[Guest guest]

I, too, say 'Myalgiac Encephalomyelitis ('....and they all moved away

from me on the bench...' if you remember that somg by Arlo Guthrie..),

but THEN I say -with disgust in my voice- known here in the states as

CFS and then blah-blah I can go on if they ask me about it. sometimes

I'm amazed to meet others who know someone with it. other times,

someone who had it and is in remission, but usually it's .. well, I do

not have many friends. And -this is sick,I guess- I am almost USED to

it.I am the weirdo who talks to the dog. Although we DO have alot of

dog owner and dog friends at least...

Love, Jane, one with the hound

> I haven't lied, but I do opt for the Myalgic Encephlomyeltis

>explaination rather than saying CFS. I find that ME sounds more

>serious than saying I have " chronic fatigue " . I have also used the

>definition rather than the diagnosis when telling people what

>is " wrong " with me. Instead of CFS, I say " I have something wrong

>with >me neurologically. My brain doesn't produce the proper

>chemicals >that >are needed to function normally " . That one usually

>gets >recognition >and understanding.

> I certainly wouldn't feel bad about " lying " . However, I would pick

>something a little closer to the truth lest your new friend feel like

>you were completely misleading him/her. Saying you have

>a " neurological disease " is a good way to put it and it's a kin to the

>truth.

>

[Guest guest]

I tend to refer it as a neuro-endocrine disorder. I was under the care of Dr.

Teitlebaum for about a year (one of the few doctors I know of who actualy knows

what he's doing when it comes to CFS or Fibro), and htats how he described it

when I had to get a dr.'s letter when I couldn;'t carry on my classes at the

community college. It sounds all nice and sciency and midacalkly too.

Ian

[Guest guest]

I don't blame you. Maybe you could say you have a chronic infection

that affects your immune and endocrine systems and causes multisystem

problems including nerve pain and severe fatigue as well as

neurological symptoms. That sounds pretty bad. I was relieved to find

I had babesiosis and maybe Lyme too. Now I just say Lyme as no one

knows what babesiosis is. Having to tell people I had CFS and hear

them laugh made the illness so much worse.

Vicky

[Guest guest]

I don't blame you. Maybe you could say you have a chronic infection

that affects your immune and endocrine systems and causes multisystem

problems including nerve pain and severe fatigue as well as

neurological symptoms. That sounds pretty bad. I was relieved to find

I had babesiosis and maybe Lyme too. Now I just say Lyme as no one

knows what babesiosis is. Having to tell people I had CFS and hear

them laugh made the illness so much worse.

Vicky

[Guest guest]

I know exactly what you are all talking about. I can't say that I have

experienced people laugh right to my face however I have experienced the look of

disbelief like I am wacky. I am so humiliated by the name Chronic Fatigue

Syndrome that I now say that I have ME, or an immune dysfunction similar to MS.

However, even when you say ME, people instantly say, " isn't that the same as

Chronic Fatigue Syndrome? " I guess the good news there is that CFS is finally

starting to become somewhat mainstream but the bad news is that now even the

title ME is now linked to CFS so people still don't believe you. However I am to

the point that I don't really care anymore what people think...once I tell them

that I won my disability case because my " T cell, lymph node and white blood

cell counts were off, that usually shuts them up. I usually then get the

response of, " oh I didn't realize that CFS was so serious! "

Tina

[Guest guest]

I gotta admit, I have started using myalgic encephalomyelitis, just because

a) I figure it is the closest thing to the truth, if not THE truth (with all

the data, I'm still a bit lost! sorry)

it " sounds serious " . I'm NOT demeaning ME becuz it IS VERY SERIOUS!!!!!

99% of the general public have NO IDEA how serious it is, but they know it

" sounds " bad , it sounds REAL !!!! They don't brush it off, or look at me like

I'm nuts, or lazy, or trying to 'pull a fast one' on the SSA.

When asked for addtl info, I briefly explain it is a neurological/immunological

disease. And if they want more, I give them a few symptoms and that seems to

satisfy their inquisitiveness and I walk away with my dignity in tact. Maybe

that is selfish, but I just can't take another " LOOK " ............sorry!

STL Jane

Winkelman wrote:

I usually either just say " chronic illness " or " autoimmune disorder " ...I realize

that Fibro isn't a autoimmune disorder, but I do have another autoimmune

disorder so I just " umbrellla " all my illnesses into one, lol. I do like

" neurological disease " , however and mya begin using it

Jane

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

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us.

[Guest guest]

It's funny, I'm just coming out of a 'crash' as I call them, aka: THE HOLE!!!

After one of my 16 y/o daughters friends had seen me twice over the weekend (

looking like crap as we do lol), she must have asked Miranda if I was 'sick

again'.......Miranda said to me " Mom, I don't really know what happens to you,

so when my friends ask me, I just tell them your symptoms "

I realized how hard it was to really put into a nutshell, one that teenagers

will understand. I told her that was fine, just tell them my symptoms, because

in all honesty, I'm not really sure what actually happens either. I did try to

explain in terms she would understand, then I told her " ya know, being in the

HOLE is compared to what an AIDS victim experiences in the later stages " THAT

hit home for her........even tho she doesn't know anyone with AIDS, she realized

just how bad it really gets. I think sometimes, as parents, we don't want to

show how we are REALLY feeling, we want to be strong, especially in front of our

kids.

I have read that statement many times in the past few years, and I'll be honest,

I finally felt like I wasn't a wuss about the disease: the pain, the

depression, weakness, and all the other lovely symptoms that go with it. As sad

as that seems, I felt somewhat validated, confirmed that I am NOT weak, I am

doing the best that I can! And that's really.................ALL any of us can

do...........

STL Jane

[Guest guest]

Hi Jane, I call it " falling down the rabbit hole " these days LOL..YES end

state AIDS, and I do know people with AIDS, who get all kind of services and

attention and expert treatment.and can run circles around me - same with MS

except in terminal stages.it's like this disease takes us up to the brink of

death (for us more severe types anyway) over and over - we walk through the

valley of the shadow.all our lives..good you could share so honestly with

your daughter. Yes we want to be strong, but kids always know when we BS

them. My poor kids were only 3 & 5 when I got sick, and after several months

admitted they thought I was going to die. I said of course not, but didn't

have a clue what was so incredibly wrong with me at the time. Glad you are

peeking your head up out of that hole! TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Wednesday, June 13, 2007 9:33 PM

To: CFAlliance

Subject: Re: Lying about CFS

It's funny, I'm just coming out of a 'crash' as I call them, aka: THE

HOLE!!!

After one of my 16 y/o daughters friends had seen me twice over the weekend

( looking like crap as we do lol), she must have asked Miranda if I was

'sick again'.......Miranda said to me " Mom, I don't really know what happens

to you, so when my friends ask me, I just tell them your symptoms "

I realized how hard it was to really put into a nutshell, one that teenagers

will understand. I told her that was fine, just tell them my symptoms,

because in all honesty, I'm not really sure what actually happens either.

[Guest guest]

Jane,

The first main symptom I knew was Fatigue and yet I now have the

neurological symptoms of ME of which I was diagnosed. I wonder if in

many cases...one leads to the other? Food for thought anyway.

/Duthchie

p.S. Speakin of which, I am really wiped out now, goin to rest.

>

> I gotta admit, I have started using myalgic encephalomyelitis, just

because

>

> a) I figure it is the closest thing to the truth, if not THE

truth (with all the data, I'm still a bit lost! sorry)

>

> it " sounds serious " . I'm NOT demeaning ME becuz it IS VERY

SERIOUS!!!!! 99% of the general public have NO IDEA how serious it

is, but they know it " sounds " bad , it sounds REAL !!!! They don't

brush it off, or look at me like I'm nuts, or lazy, or trying

to 'pull a fast one' on the SSA.

[Guest guest]

I DID Aylwin, I DID peek my head out, just briefly, but it was GOOD!

She was 8 when this all started, so I can't imagine how scared they REALLY feel.

I know she was always much more visibly shaken than either of her older brothers

and she has just become accustomed to helping me out. Yesterday, I took her and

a girlfriend out to pick up new swimsuits, I could feel the crash coming, you

know the feeling, weak in the knees, wobbly, slurring words, dizzy, ears

screaming and just about to pass out, so I fumbled my way to the snack bar and

she came and helped me to the checkout, put out her arm for me to steady myself

as I drove her and her gf back to the pool of course! Her gf was very open and

asked me questions...........this was the first time I'd ever Fallen into the

hole right in front of her........she was amazed how fast it happens.

YUP!!!!! Welcome to my world baby! LOL

I know I am truly blessed by having Miranda, she is understanding, not

embarrassed by me in front of her friends, when the words won't come out or are

completely garbled, she smiles and translates for me. SHe is an angel to me

(well...............most days, she is 16 you know! LOL)

Thanks for listening, I'm really just rambling on here. You take good care in

your hole................as I will in mine! LMAO!!!!

STL Jane

Aylwin wrote: Hi Jane, I

call it " falling down the rabbit hole " these days LOL..YES end

state AIDS, and I do know people with AIDS, who get all kind of services and

attention and expert treatment.and can run circles around me - same with MS

except in terminal stages.it's like this disease takes us up to the brink of

death (for us more severe types anyway) over and over

[Guest guest]

Hi again Jane, actually in a way you are very fortunate that Miranda really

got to see it like that. It is a comfort to have a witness sometimes, and

then she really gets it. My daughter Katy was wonderful when I relapsed

living where she does, last year - bussed 1-1/2 hrs (because I could not

drive, too impaired) after work to get me groceries, walk the dogs etc.

Bless our kids hey? Aylwin xo

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Saturday, June 16, 2007 1:35 PM

To: CFAlliance

Subject: Re: Lying about CFS

I DID Aylwin, I DID peek my head out, just briefly, but it was GOOD!

She was 8 when this all started, so I can't imagine how scared they REALLY

feel. I know she was always much more visibly shaken than either of her

older brothers and she has just become accustomed to helping me out.

[Guest guest]

Hi , you know, the neuro stuff got a lot worse for me later on, not

in the first round (18 mo), second whack, 6 months later and much worse,

seizures, you name it.if there's one thing you can say about this disease,

it's full of surprises, changes all the time, you never know where you are

from one moment to the next. XOX Aylwin xox

[Guest guest]

,

SO you have a doc, here in the states who actually diagnosed you with ME?

Hmmmmmmmmmmm............I need to re-read ME symptoms again..........off I go!

Sorry to hear you are in the hole, please take good care until you can peek

you're head out again, my prayers and thoughts are with you hun.....CYA soon!

Much Love,

STL Jane

wrote: Jane,

The first main symptom I knew was Fatigue and yet I now have the

neurological symptoms of ME of which I was diagnosed. I wonder if in

many cases...one leads to the other? Food for thought anyway.

/Duthchie

[Guest guest]

Jane, I wish you luck with this. Be a proud survivor of this! You deserve a

medal - we all do LOL! Nothing to be ashamed of, and don't let anyone put it

on you. It's good for people to see the reality. Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Sunday, June 17, 2007 7:29 AM

To: CFAlliance

Subject: Re: Lying about CFS

OH, I thank God everyday for her, as I'm sure you do Katy too!

TODAY, is a family reunion, and I have not gone in 4 years, becuz summer is

my hardest time, I don't tolerate the heat at ALL! BUT, I'm a bit weak,

aches and pains everywhere and garbled speech already this morning - and I

know it will get worse- BUT I am going anyway

[Guest guest]

Hi Jane,

I hope that the family reunion went okay and that you did get support

more and talking behind your back less. Let us know how it goes.

Sandrea

[Guest guest]

Thanks Sandrea, actually, the reunion went much better than expected. I was in

full swing, I tell ya. They all got quite a show! LOL..........I was stumbling

around, incoherent speech, having to be escorted to the bathroom by my lovely

daughter, who so willingly offers a hand without being asked......she just KNOWS

when I need it!!!! My younger son (17) also stopped and waited for me, put out

a strong arm for my support and even carried my purse out when we left (again,

without me even asking - he just instinctively grabbed it!) God bless em!

I hadn't been to this annual event in 3-4 years, so, it was a surprise for

extended family members to see me in this new way! I have always been very

energetic, talk a mile a minute, smiling, laughing, joking......and was a bit

nervous to see the reactions I might get - but was pleasantly surprised by all

the love and support people showed me.

I also get speech problems when I really push myself, and Sunday was again, full

blown. But everyone was very patient in letting me stutter and mumble my way

thru a sentence, head jerking the whole time!

It's funny, I kinda feel like I 'came out of the closet' with this disease.

Part of me was embarrassed to be seen like that, yet part of me knows that this

is just another way to get the word out. People NEED to see us like this, to

wake them up and realize, this is neither fake nor easy to deal with. This

disease CHANGES LIVES COMPLETELY!

I'm glad I went..............thanks for asking.

STL Jane