Dealing with lupus

[lupusgirl]

When the doctor came to me in the hospital and told me i had Lupus, i must admitt me and my husband had a blank expression over our face. Lupus doctor!! What is it?? Was mine and my husband comment.. 3 years on and we are still learning things about the illness..Since having SLE i have come across other medical problems, such as Epilepsey, Hughes Syndrome and Angina.. I am still finding it hard to live with at the moment iam suffering with depression.. My family are hard to deal with as they don't accept the illness. My friends are great they are learning about lupus and are trying to give me as much support as they can. I try to think of the good times rather than the bad,sometimes that is the only thing that keeps me sane.. :P Thankyou for listening :love:

[alobreto]

Hi, Girl! ;)
It's not unusual for loved ones to seem distant and uncaring when a chronic illness is involved. That may be partly true, but also can be due to the perception and evaluation of their behaviors.

Loved ones may have more of an emotional investment in you than your friends. For that reason it is more painful and difficult for them to observe, deal with, and talk about the illness and how it has affected the relationship between you.

I try not to burden those closest to me with details that may be almost as painful to them as they are to me. This board is a great place to come to do that, and you mentioned that your friends are willing to listen and empathize.

While it might be nice if EVERYONE could listen to us vent and offer us their support, it just isn't possible. Better to not expect what isn't going to happen, than to expect the impossible and be repeatedly disappointed.

You've come to the exact right place to communicate with people who fully understand your feelings and position. Lupus is no picnic. I hope you have better days and nights ahead!
Regards,
Angela :flowers:

[raggedyann1]

Lupusgirl,

Have you been put on an anti-depressant by one of your doctors? Most of us here take anti-depressants, it is common with a chronic illness to have depression.

The other thing I have done is to change things around find things that I can still do to keep my mind off of myself. Being a moderator here has been very good for me, even tho it is still about lupus, it is about wanting to help you, not all about me.

Recently I have started learning how to sew and also I am trying my hand at steniciling, there are a few things around my house that need sprucing up. It might take me 5 days to make one 14" pillow because of my hands but I still made that pillow. todays accomplishment was painting copper accents on the metal braiding on a small wastepaper basket. Tomorrow I might be able to stencil on a butterfly or even later tonight.

I had to learn new things because some of my old interests are too hard on my hands. So perhaps you need to look around at things you can do for yourself. I figured some of this out watching lots of home decorating shows on tv.

The other thing I have done, almost since the day I got sick again, is to dress everyday. I no longer needed my suits and other work clothes and didn't want to put on "dumpy" sweats everyday. So I wear casual clothing that helps me feel feminine. If you like sweats wear sweats but set a time of day you will be dressed by. Early on my goal was noon at the latest, now it is 2-3 at the latest as somedays I do not get up till 11. Some people here probably think I am bonkers dressing everyday but it is something I need to do for me and my hubby.

Hope this helps.

Karen

[JoD]

Originally posted by lupusgirl@Jun 25 2005, 09:35 AM
My family are hard to deal with as they don't accept the illness. My friends are great they are learning about lupus and are trying to give me as much support as they can.
http://www.butyoudontlooksick.com/spoons.htm

A neat way to explain lupus to those who don't quite get it...because we don't look sick.
Joanne

[Widget]

Excellent explanation .. thanks JoD
Hang in there lupus girl ...
Widget NZ
:flowers:

[lupusgirl]

:wave: :wave: HI JoD, DID I SAY SOMETHING WRONG IN THAT QUOTE????