How does anyone explain this to your
family to where they understand? I have
tried having them read books and talk with
people with sel. I was diagnosed with sle
4 yrs ago and since then fibromyalgia,
hypothyroid, depression,anxiety, just to
name a few. I am so tired of going to the
doctors and only finding another diagnosis
to add. Few in my family say I can work
but am lazy. I choice not to work because
where I was working they ask "how are you
felling today or your facr is really red
today" I couldn't keep up and always
feeling tired. After work all I wanted to
do was go to bed. I love my family but I
need support. Our local support group are
older women with husbands supporting them
financially, my is on disability for over
20 year. It is hard to get by. Please
help!
|
Hollydc
New User, Becoming EHEALTHy
Joined: 23 Jun 2005 Posts: 20 Location: South Carolina
You Are Not Alone! Posted: 08-23-05 13:44pm
Hi,
i understand what you are going through.
Am 31 and was diagnosed at 29 but was
having symptoms as early as 23 years old.
I would be so tired that all I wanted to
do is get in the bed and lay down. I have
been holding on to my job and fortunately
I will be working 2 to 3 days from home
soon. It is hard working when you feel so
tired. I have to put on different faces
throughout the day, pretending as if
everything is great when I really feel
terrible. I have not told my boss about
my sle for fear that I would be looked
upon as a liability. I have only been
here for 6 months after leaving a work
environment that was soooo stressful it
sent me to the hospital for weeks at a
time twice with in a year and a half.
Keeping this secret and hoping that I do
not have a bad flare-up is stressful
within its self.
I do understand about the family not
understanding. I have family members and
friends who can't seem to grasp the
magnitude this disease takes a person. My
fiance has been great. He has been with
me through my toughest times and
hospitalizations. But I get stressed
sometimes because I am the bread winner
and pay the bulk of our bills. I travel
an hour to and from work and he travels 10
minutes. Sometimes I get frustrated
because I am so tired when I get home and
then I have to cook. Sometimes I get
frustrated because I am tired and do not
feel like being intimate and he does. He
used to get mad and not understand that it
wasn't personal against him..... But
after a while it did become personal
because of the way he handled the
situation. I might have been on the phone
talking with a friend for an hour and then
he would throw that up in,my face saying
"you have time and energy for other people
but not for me". He also started on this
"you must be cheating". He just doesn't
get it sometimes.
On the days when I am really tried, I
might say "it sure would be nice to come
home and not have to cook sometimes".
Hinting to him that I want him to cook
sometimes. But he has every excuse in the
book like "i would cook but you don't like
the way I cook, or I can't cook it like
you...... But lately he gets mad with me
for saying that and then starts to run
down the list of things he does around the
house and in the yard that I don't do....
And he's right to a certain extent. He
does do a lot more than I do, but he is
healthy and I am not. And I need him to
understand that sometimes because
arguments on who does what only makes me
feel worse about the hand that I have been
dealt in life with sle.... He has his
good days and his bad.
I also have people who depend on me on my
church choir as I am the assistant
director. Sometimes they don't seem to
understand that I can't be everywhere and
do everything that may be required of
because my body won't allow it..... Some
days I could stay in bed all day long....
Sometimes, my phone will ring and I won't
answer it because I am even too tired to
talk, just to hold a conversation would be
too much. It would require me to use
brain power.... That's sad but it's
true.... And lately the fatigue has been
getting worse.
All I do is pray to god that I can help
others to see that sle is not a disease
that you can pick and choose what you can
and can not do. It decides for you
sometimes on a daily, hourly, and minutes
basis. When you need to rest, rest and do
not feel guilty about it. The house can
remain a mess... What since is it to have
a spic and span house and you are in the
hospital because you didn't listen to your
body??? None!
Just know that you are not alone!!!
|
trustingJC
New User, Becoming EHEALTHy
Joined: 28 Aug 2005 Posts: 2 Location: Columbus,OH
I Really Understand.....sometimes I Wonder If I Am Lazy! Posted: 08-28-05 22:53pm
I really understand what you are going
through. I was dg w/ sle in 2001 and
fibro last year. I constantly worry
about people thinking I am lazy. We
found out that I had sle a few weeks after
closing on our new build home....We
recently lost our home because we couldn't
keep up financially between my husband
having to take unpaid family leave days to
help me with our 2 children, my not being
able to work and the added medical
expenses (we have good insurance but
$100-$200 a month in co-pays adds up. I
have a pending disability case and have
been waiting for a hearing for well over a
year. I worry that people think I was
lazy and irresponsible allowing us to lose
our home while I slept! I have a
relative who works with a lady who has
fibro and if I hear again what this woman
does in a day my head may explode. I
homeschool our 2 children because we no
longer could afford private school and
that is all I have energy for. I had
someone tell me that they should send
molly maid to my house.....That hurt. I
do try to tell myself all the time that
the lord knows how I feel and what I am,
and am not able to do. When it comes
down to it, all we can do is our best and
if that is under scrutiny by anyone that
is their problem and not ours. Unless
you have walked a mile in someone's shoes
you cannot know what they deal with. Sle
has its own challenges.....Don't add the
challenge of worrying about others
perceptions. It took me a long time to
stop beating myself up for not feeling
like doing what I wanted to do. I do
know that my husband started reading
through message boards online at my
request. I was worried that he didn't
understand that I wasn't just lazy or
crazy even. This did give him more
understanding about what I deal with and
compassion. You could always suggest
this to your family or friends but please
don't stress over what they think. Those
who wish to criticize will always find
something to critique! I pray the best
for you.
|
Varouzh
New User, Becoming EHEALTHy
Joined: 28 Aug 2005 Posts: 1
Lazy Posted: 08-28-05 23:30pm
Have you had a drug or alcohol addiction
problem? If you did try aa, you can find
meeting in your area easy. Cosulte your
yelow pages. It is an ammazinfg program.
It works it does>>>>>.
Even if you did not an addiction problem
get twelve and twelve book. And live
according to the twelve suggestins.
The site is not a replacement for professional medical opinion, examination, diagnosis or treatment. Always seek the advice of your medical doctor or other qualified health professional before starting any new treatment or making any changes to existing treatment. Do not delay seeking or disregard medical advice based on information written by any author on this site. No health questions and information on eHealth Forum is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure or prevent any disease without the supervision of a medical doctor. Posts made to these forums express the views and opinions of the author, and not the administrators, moderators, or editorial staff and hence eHealth Forum and its principals will accept no liabilities or responsibilities for the statements made.
Schizophreniahealth
This page was last updated on June 11, 2008
