Hello again,
I used to work fulltime, but had to quit for a year and am now going back to
a low-stress part time job, mostly for something to do.  Last Nov - Feb I
was in bed most of that time, literally days at a time.  I did the best I
could.  To help out, I would make phone calls for my husband during the day,
and he would leave simple chores I could accomplish while in bed.  I had to
change my expectations of myself.

I did have 3 years of no symptoms, other than an occasional joint twinge and
my need for a nap about once a week.  Now that I am not as well as I would
like, I have had to simplify things.  Everyone picks up after themselves or
it stays on the floor...you dirty the dish, you wash it!  Older kids can
learn to do laundry...my 17y/o does his own.  My husband and I cook/bbq
enough on weekends so I only have to add side dishes during the week.  Take
your husband to a doc appt....it may help him understand.

Lupus is very overwhelming at first.  You are not alone...ask for help when
you need it and remember we understand.  We have ALL been there.

I will remember you in my thoughts,
Janet R

~Spam deterrent: remove "Im" from email addy.~

I know exactly how you feel, I am having a really bad time at the moment!!
I am currently having to spend a day doing then a day in bed, the kidney doc
just changed my BP med, it completely wiped me out!! Three days in bed
barely able to make it to the bathroom!!  According to the medics I am not
suffering with lupus, just cos my stupid blood does not do as it should,
but as I have most of the symptoms listed on all lupus related sites, I have
my own beliefs!!  Sorry for the rant, I will now go back to lurking.

Janet

Hi Veronica,
There are no easy answers. I have had to give up so much. Sometimes it is
hard not to feel useless and to find what my purpose is in life. It seems to
me that you do an aweful lot. Could family members help you with the
household duties? I started writing down the things I accomplish in a day.
Even the small things add up. I then have a written record that I can review
later. It helps me see that I am pulling my own weight most days anyway. The
fatigue is hard. I sleep almost every afernoon. I know you can't do that
when you are working. I am only mentioning it, so you can see that you are
not alone when it comes to being tired. To be honest, I push back the
memories of all the things I used to do before I got sick. It hurts me to
think about. I think I would get depressed if I did. It has helped me to
talk about things here. Putting my thoughts in writing is a great way to
ease the pain. I am glad you feel free to do it too.
BJ-Sk. Canada

How do I handle the constant aches?

Not real well. I'm worse in the mornings, knees and ankles don't want to
function. Stairs are terrible. But as the day progresses they seem to limber
up a little and I get by.

I think for me the diagnosis of lupus was a blessing because at least I knew
why I hurt. Before I used to see everyone else doing things and wonder what
the heck was wrong with me that I never could keep up with what they did. I
think to some extent there has to be some acceptance. Then the learning
curve to know what you can do. Then make some folks in your house help.
(When you figure out how to do that, tell me - my husband does not help much
at all!)

Work around some things. I don't do house work on weeknights. I'm lucky if
the dishes make it to the sink. I can't work and do everything else, too!
Weekends I try to catch up which of course I never do. So some things stay
dirty!! Cooking on weekends help or fix easy stuff on weeknights. Sometimes
I come in at night and just have to sit and do nothing before I can fix
dinner/supper. Dinners have to be quick and easy if I've been working. But
some nights even making a salad is almost too much work.

Double cooking works as I've done that for years. I'd make spaghetti or
meatloaf and fix extra then freeze the excess in individual portions so they
only had to be re-heated. Eventually you will build up a nice stack of
meals, so you aren't eating lasagna 3 times in the same week.

Laundry I do on weekends. If I strip the bed my husband has to help me
remake it. I told him the bathroom upstairs is his to clean. I don't think
he believes me yet. LOL But I do use the new after shower spray and that
helps keep the shower/tub cleaner longer.

My next oven will be self cleaning!!!

Don't be as picky about keeping things clean. Take naps when you can. Do
things slowly. Cheer yourself when you've done something and reward yourself
with a little rest! I work around the house when feel up to it and take lots
of little breaks.
Bev

Hello Veronica,

Every meet a hosptable sick person?  Mostly all folks who are in pain are
quite grumpy.  Just ask my hubby.

Positive?  Positive is loving life much more then you do this dang stupid
illness.  Let's face it - life is hard.  Being sick does not make it any
easier, does it?  And sometimes there is a need to cry as well as laugh.

I am disabled and have more health drawbacks then a dirty pond does
mosquitos.  Hey, I think it all started out with that nasty little bug in
1999 (Meningitis / Encephalitis).  Since then, I am on SSDI (disabled) but
try hard to have more good days then bad days but still I cry.  I am on over
20 medications to treat many diagnosed conditions of which some are, MCTD
(an overlap of Lupus, Scleroderma and Polymyositis of which I am mainly
Lupus ), Fibromyalgia, Severe DDD (OA of the Spine), GERD, IBS, Essential
Tremors, Periphial Neuropathy, Hypertention (sometimes controlled /
sometimes not ), multiple skin (ecsema, dermatitis, etc) rashes, polycystic
ovaries, sleep problems (just had the apnea test done ), COPD/Asthma, and I
love this next one.  White Matter Microvascular Disease, which is really
just arteriosclerosis of the brain.  That and the lesions to go with it as a
result of the 1999 episode. And not I am fighting an infection
(diverticulitis).

But I am still trying to be happy.  Am not a quitter and will not let a dang
disease beat me to the punch.  Make sure the doctor is treating your pain
adequately.  I am a big supporter of that!

Veronica, you just hang in there because it is for people like yourself that
give me the greatest cause to hang in their also.  Am sure there are many
who will hear you but do not fear asking for help.  And when the day comes
when you can not do the things you were use to... then that means just DO
NEW THINGS!!

You are important in Life and all those who love you.  Do not short change
yourself.  To me, your worth a billion snail butts and then some!

Hugs!

Always,
cloud

Hi Veronica,

It is a lot to face, being diagnosed with lupus (the word sounds so yicky I
don't even want to say it to people), and realizing that some of the
hardships you are facing may be long-term.  There is remission, but I don't
think it is a good idea to put your life on hold waiting for that.

Grief is an essential phase, and sometimes like anger, we feel that it is
something that we should not express.  We need to grieve the loss of our
health and whatever else we may lose.  It is an essential part of coming to
acceptance.

I have unrelenting joint pain, fatigue, massive headaches, cognitive
dysfunction.  Constant pain can drive me over the edge.  If I am in constant
pain for three weeks, I hit a wall and begin to disintigrate.  So that is my
limit.  I have to take prednisone and quite a few other medicines to keep me
in the "quality of health" zone--able to stay out of bed, use my hands, and
get a break from the big, crushing joint pains that come on like some kind
of horrible season.

It feels a bit like I am putting you on a downer by saying all this, but I
think it is what you are asking to know.  Everyone in this group has times
when it seems too much to bear, and we try to give them support.  But you
will see that we have great humor here, too.  We can and do have fun and
find happiness in spite of living with illness.

I have had to give up backpacking and most camping and hiking, bicycle
riding, and playing the guitar, as well as most outings that spend any
amount of time in the sun. I now live a different life than I would have
without this illness.  I do a lot of reading, I draw, I write, and lots of
other quiet, gentle things.  I find meditation very helpful... I think it
helps to increase my pain tolerance!

It is wonderful that you can come to this group and ask for support.  I
think that it shows that you can handle what you have, and find happiness
again.

wishing you all the best

Boo

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"Veronica" <veronica_98@removethishotmail.com> wrote in message news:4ar2j0p
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