CFIDS/Other Illnesses/Seeking

June 15, 2012

Good day evryone. I'm a 58 yr. Old female diagnosed long ago w/CFIDS having been

bedridden at ond time and totally in denial about everything. i've gone from

that to 'living on my feet' despite health issues. I don't really have a great

support network and when i've said CFIDS to people thought to be friends, i may

have just as well saie leprosy or AIDS. I'm wanting to live my life as

positively and actively as i can. I've not yet learned how to balance and limit.

I don't go to drs anymore unless something is critical. I'm on my own and

sometimes this gets rough. Is there anyone out there in a similar situation? I'd

love to hear from you. I'm grateful evry day for what i have but am also

grieving everyday what is gone as a result of chronic illness and how i have

lived in that and other's reactions. Would love to hear your stories and wonder

if anyone else is alone in this but do not restrict my appeal to those alone. A

pleasant day to you all.

June 16, 2012

many blessings your way. first off you are not a victim but a survivor remember

this saying often. let it be your mantra as it truly is a hard road to travel,

and every day you awake and at least make it outta bed to pee you accomplished

something. although at moments the hideousness of the daily living with c/f me

and the myriad of labels they like to give us feels as though prison work camp

would be easier than accomplishing our every day activities and less alienating

than having to tell others of our ills only to be told the usual but you don't

look sick so your just lazy responses that we all receive. and i too stay away

from most tradition medicine providers as first off i have hideous side effects

from the new improved wonder drugs they prescribe fix one symptom only to have

one worse surface from the drugs. and have found that i can understand being

dismissed by my friends and family as they are clueless but find it rather

disconcerting when medical professionals do the same as they are supposedly

educated but the reality is the medical establishment really does not have a

full understanding of what exactly autoimmune diseases do within the body and

therefore are simply making educated guesses on treatment and diagnosis's based

on observation and past experience.without taking into consideration that each

individual is different and presents with sickness differently.

i have given up the denial aspect of being sick after all its just me that i

need to prove anything to and damn it i already know every day i wake up and ask

is this what everyone in the world feels like because if it is then no wonder

the world is such a mean nasty place as if my pain had its way that is the face

ide present to the world daily but alas i put on big girl panties swallow my

pain and attempt to bravely survive, some days more successfully than others and

although i have family they are of little use as they expect that i will always

be the strong study caretaker they always expect to see.so the sense of

isolation is magnified in my life as those whom supposedly love me have no

understanding or respect for my physical limits. one day perhaps ill share more

of the dynamics of my daily existence,although it would come across as a

terrible woo is me rant.it truly is that bad , some would call it drudgery

personally i call it the bonds of servitude wrapped up in wedding bands of

broken promise. sorry had to have a moment of sarcasm laughter is healing after

all. but for now welcome and know that you are not alone and are in a forum of

understanding people that although do not all share the same experiences have

compassion for the experiences you are having. knowing just how devastating

being sick is on the human psyche.

>

> Good day evryone. I'm a 58 yr. Old female diagnosed long ago w/CFIDS having

been bedridden at ond time and totally in denial about everything. i've gone

from that to 'living on my feet' despite health issues. I don't really have a

great support network and when i've said CFIDS to people thought to be friends,

i may have just as well saie leprosy or AIDS. I'm wanting to live my life as

positively and actively as i can. I've not yet learned how to balance and limit.

I don't go to drs anymore unless something is critical. I'm on my own and

sometimes this gets rough. Is there anyone out there in a similar situation? I'd

love to hear from you. I'm grateful evry day for what i have but am also

grieving everyday what is gone as a result of chronic illness and how i have

lived in that and other's reactions. Would love to hear your stories and wonder

if anyone else is alone in this but do not restrict my appeal to those alone. A

pleasant day to you all.

>

June 16, 2012

Remember this: You are not alone. There are untold amount of men and women in

the same situation but through this site we are all connected and we are here

for each other. Your story is so similar to mine I would just have to change a

few details and it would be me. I take solice in knowing that I have this site

to vent and post and even call for help and I would know that people would be

there for me. " One love, One heart "

June 16, 2012

Remember this: You are not alone. There are untold amount of men and women in

the same situation but through this site we are all connected and we are here

for each other. Your story is so similar to mine I would just have to change a

few details and it would be me. I take solice in knowing that I have this site

to vent and post and even call for help and I would know that people would be

there for me. " One love, One heart "

June 17, 2012

Hi Jo,

I'm new to the group, but in very similar circumstances. I was a Type A

personality, very driven and active. I was a project manager in a high stress

position and loved it. We owned one home, were building a dream home, etc.

Then I got sick. And not the sick that I'd been for years, that I could rise

above and continue doing everything I'd been doing. I had fibromyalgia and TMJ

for years, decades. I could deal with that.

Then I came down with Sjogren's and what really knocked me off my feet was

pancreatitis. The pancreatitis was followed by nerve overload, a major attack of

fibro and the finishing touch was the CFS.

That was 4 years ago. I spent the first two years seeking medical solutions. In

total denial. If I could only find the right treatment, I could resume my life.

I'm nothing if not stubborn.

I became unemployed, we went bankrupt and lost both houses, I got on SS

Disability, etc. I spent lots of weeks / months in bed not moving thinking that

if I could calm everything down and get enough rest, I would heal and I could

resume my life.

But you know what? Life was going on without me. It didn't stop. So I decided

to give up denial. Are you familiar with the 5 stages of grieving? Denial,

anger, bargaining, depression and acceptance. It was a rough road but I think

I am finally in the acceptance stage. I still have moments when I am right back

in denial. For example, when I'm out with friends I want to do everything they

do. When I do, it really knocks me for a loop and I have to relearn that old

lesson over and over again. Did I say I was stubborn? <giggle>

I think my Sjogren's, CFS and Fibro have gotten worse over time. But I have

become much more functional. I schedule out my time (I hate scheduling). For

every day I go do something, I have to spend at least one day at home taking it

easy. Sounds limiting, but compared to being in bed doing nothing and seeing

nothing, it is really satisfying. And everyday I get a little better at managing

my time and energy.

You are not alone. You don't have to do this on your own. There are others out

there who will help you. Just keep posting. Reaching out is a great step.

Keep going.

Very gentle hugs,

June 17, 2012