Hello, I am new to group

[Guest guest]

Hello, I am new to group. I have fibro/cfs..{and a few other diagnosis}

I am looking for support and info. I live away from family. Ive lost

almost all friends due to this illness for one reason or another. I

would have never thought people would be so cruel over a horrible

diease like this but most didnt believe such diease exsisted.

Ive been unable to work over a year and having a really, really hard

time finding a good doctor. You would think that in all these years and

all the doctors I would have found a good one who can help me by now.

I look forward to meeting new people with the illness.

Thanks

[Guest guest]

Hi “batesfan66”, well you are not alone here! It is all too common to lose

one’s friends, family support etc. over these dratted diseases. As far as

doctors go, join the club <sigh>. Still, there are a few good ones out

there, just not around where I live! We have to be our own

detectives/treatment specialists sometimes. Anyway, you are very welcome

here, and it’s a great place to meet new friends who do

understand…”e”-friends anyway! Aylwin xox means a newbie hug to you!

[Guest guest]

Hi

What state do you live in??? Maybe some group members can help out.

Just remember that you are not alone!!! This group is such a support!!!

I also have lost my job and many friends. Plus living away from family.

That I traveled to when I was well. Who can't seem to recipocate when

I need it.

[Guest guest]

>

> Hello, I am new to group. I have fibro/cfs..{and a few other

diagnosis}

> I am looking for support and info. I live away from family. Ive

lost

> almost all friends due to this illness for one reason or another. I

> would have never thought people would be so cruel over a horrible

> diease like this but most didnt believe such diease exsisted.

>

> Ive been unable to work over a year and having a really, really

hard

> time finding a good doctor. You would think that in all these years

and

> all the doctors I would have found a good one who can help me by

now.

>

> I look forward to meeting new people with the illness.

>

> Thanks

>

Hello and Welcome,

sorry, I don't know your name!

Unfortunately your story is all too common, ignorance can really make

people do and say hurtful things. I have kept trying to educate those

people who really mattered to me, like parents. My persistance did

actually pay off in that case, but often it doesn't. Most people will

advise you not to waste your precious energy in futile efforts, and

for the most part they are right, sadly. And it is true that those

people who are inclined not to understand are not the type you want

to be friends with anyway. But it is very hard.

You will find understanding and support here, and in other groups

like this, so that helps make up for it a little.

On the topic of doctors, I would say persistance again. Just keep

looking until you find a good one. Ask around to see if anyone has

heard of one in your area.

Last of all, don't be afraid to ask lots of questions, and vent, if

you need it. There is lots of knowledge in groups like this, so use

it!!

welcome again, and take care, ness.

[Guest guest]

Good Morning Batesfan - and welcome to our group!  My name is Jane, I live in

St. Louis, MO and I have CFS & FM also, 10 years now.    Been unable to work in

2 1/2 years and was just awarded disability benefits in July (FINALLY - yee

hah!).  I'm married with 3 kids - 21,19 and 17. 

It is so sad, that when we need our family and friends the most, they seem to

drift. They just don't understand and sometimes, I feel like when someone is

really starting to get it, really BELIEVE that it is a real

disease/illness/whatever we're calling it...........they say or do something

that makes me realize.....nope, not quite yet!   

I thought, after all these years,  hubby and I were finally on the same page

about this illness, but the other day, when talking to my brother regarding the

fact that during the summer months, I usually only get one or two decent days a

week - not usually in a row and certainly NOT fully functional mind you, but

enough where I can maybe do a thing or two around the house.  I noted the look

on hubby's face.  Later, I asked him what HIS opinion was and he said, " well, it

seems like you have several " .

I was floored!  I can't tell you how many times a week, half comatose on the

couch, I get " that look " from him. Kind of that " oh.......you're on the couch,

not feeling well, AGAIN! "   How does he live in this house with me and not see

it?  He's known me 25 years - how does HE not see the change when my

acquaintance neighbor knows IMMEDIATELY when my day is not going well?????  My

coworkers could tell?  My sister-in-law who sees me about once a year knows???

I've come to the conclusion, most people will NEVER get it, never really believe

it (My hubby included apparently)  until there is:  a) more definite treatment

and diagnosis info available, they are struck with it  c) we teach them, one

by one!   

This is a wonderful support system - we DO believe, we understand and we are

here to help each other. If you let us know where you are located, someone here

may have a good doctor suggestion for you too.

Good luck and take good care too!

STL Jane

Jane 

[Guest guest]

Hey, and welcome

Antoinette Christie

antoinettec88.bebo.com

familyfights4me

[Guest guest]

Jane ~

I just wanted to tell you that I appreciated your post. It is really

great having online support again. I had strayed away from it for a lot of

years. I, too, have had CFIDS for 10 years (almost 11). Many of those years were

spent in denial and shame of my illness. It is difficult to feel any other way

because of the reactions of family and friends, and doctors and society. I've

done a lot of self-healing and have definitely improved. It is common, I read,

to improve 65% after five or six years, which is what happened to me. I don't

yet have a doctor who gets it about CFIDS.

My two girls are 16 and 13 1/2, and awesome. My husband and I are

separated which is better for us emotionally, but super challenging financially

as I can't work. Paying a mortgage and a rent in San Diego CA is insane!

Thanks for posting. Hope to hear from you again.

Judy

[Guest guest]

>

> Jane

>

> Try to get your husband involved. Show him reports on the internet. I

> like: www.immunesupport.com Explain the difference between

> chronic fatigue which usually has 1 cause like thyroid, stress,

infection,

> etc . And the syndrome which is a multifactorial disease involving

multiple

> viruses, bacterial infection and yeast infection which attack the

endocrine,

> muscles, brain, and nervous system. It is a lot for one person to deal

> with.

>

> If you can find a doctor who deals with CFIDS take him to an

appointment.

> Two sets of ears are better than l.

>

Good Morning Lois and thank you for your suggestions.....When I was

first dxd and reading as much as I could, I printed out info that I

found really helpful and straightforward. I gave it to him one evening

and he just laid it aside......I later placed it on his nightstand and

there it laid for months. Untouched, I just kept dusting around it.

I was really ticked and and hurt, needless to say.

Hubby did eventually go with me to my CFS doctor (Well, he had to

drive me and get me waddled down the hall! LOL)about 2 years ago. He

got to ask all the questions that had evidently been burning in his

mind for years, which she answered and that seemed to help him

understand quite a bit. I think, for the first time, he actually

BELIEVED I wasn't faking this. (How you fake this, I'm not quite

sure,but anyway.......?????) He's gotten much better, more

understanding over the last couple of years. He has really pulled

thru for me many times. Keep in mind, like many people, he is of the

mindset that people just need to push on thru, past the pain, etc.

You can't let it take you over. Mind over matter................that

of course, doesn't work here as we know, but it is a common

misconception with most people, family/friends that I have come in

contact with. Which really strikes me funny, becuz I have always been

a positive, upbeat, energetic push-on-thru kind of gal -hubby KNOWS

this????? So, like you said, he can't fix it and he's still battling

with that 'mind over matter' mindset. Patience is practiced heavily

on both our sides! LOL

So like I said, I was so shocked when his view of what is going on is

so different from mine! I thought we were past all that?

I also found out, just in the past few weeks, that the doctor who

originally " diagnosed' me with CFS (our family doctor for 20+ years)

told my hubby at one of hubby's appts with him, that " CFS is a junk

diagnosis..when pt comes in with certain combos of complaints and

symptoms and we can't find anything else wrong, we just throw it under

CFS. "

Now, when you break this down, really.........it's true - SAD, but

true! It is an exclusionary diagnosis - but as soon as hubby heard

the word " junk " , that instantly equated to " fake " .

On a side note - another brother just had a baby in late May. I have

been unable to make it to their house to see her yet (summer is

hardest on me) He and wife were here Saturday to visit, but didn't

bring baby (apparently, babies cannot go outside for the first 6

months !!!!! - not going into that right now!) As they were leaving,

my brother was kind of making excuses for me, " I know we live pretty

far away " and " gas is so expensive " which was sweet, but I kept

telling him those weren't the reasons I haven't been there. SILaw

then made a snide remark, " well - we'll invite you to her wedding " .

I was feeling hurt, then ticked off and of course, guilty. Later,

when relaying this info to hubby, he was 110% behind me. " Jane, they

don't get it - don't you feel guilty about it. They have NO IDEA what

your life and health are like now! They have never seen you on your

REALLY bad, non-functional days. If they truly understood, they would

have brought Isabelle to YOU today - Nadia is just being selfish "

So there ya go! LOL Hubby really does get it...... mostly....I

think! LOL

Take good care now, sorry so long! LOL

STL Jane

[Guest guest]

>

> Jane ~

>

> I just wanted to tell you that I appreciated your post. It

is really great having online support again. I had strayed away from

it for a lot of years. I, too, have had CFIDS for 10 years (almost

11). Many of those years were spent in denial and shame of my illness.

It is difficult to feel any other way because of the reactions of

family and friends, and doctors and society. I've done a lot of

self-healing and have definitely improved. It is common, I read, to

improve 65% after five or six years, which is what happened to me. I

don't yet have a doctor who gets it about CFIDS.

>

> My two girls are 16 and 13 1/2, and awesome. My husband and

I are separated which is better for us emotionally, but super

challenging financially as I can't work. Paying a mortgage and a rent

in San Diego CA is insane!

>

> Thanks for posting. Hope to hear from you again.

>

> Judy

>

Morning Judy,

Thank you so much for your support and response! Sounds like you are

having a very tough time right now. I hope things get easier for you,

whatever that may mean for you in your personal life. Hubby and I seem

to go thru these cycles, where he seems to get it,then says or does

something that makes me think he doesn't really get it. We just

see-saw back and forth, but it's getting better.

This disease is so difficult, on SO MANY levels, as we now know.

Thankfully, your girls are older and can understand a bit better now,

I hope.

I do wish you well and hope you find a good doc SOON. That makes SUCH

a difference. I actually found mine thru a friend of mine, who worked

at an MRI facility. I was searching for a doc and finding none, when

it hit me " what testing do almost all CFS patients have? " an MRI! I

just called her and within about 1/2 hour, she called me back with a

doc's name that had patients with CFS! It was a Godsend! Maybe you

could do the same???? You might get lucky and find someone helpful?

Take good care now

STL Jane