[marybeth59]

Hi
I have been diagnosed with lupus for about two years but was "in denial" for a while. I also have coeliac desease, and wonder if there is any one else out there with these two conditions?
My main problems are fatigue, aches and pains, depression,, and I am having some more tests because my eye sight is worsening, and I have to have an ecg. One of my problems is telling other people, as so many comment on how well I look!! I am working and sometimes come home and fall asleep in the evening. Sounds familiar?! I have an understanding husband and a teenage son (and we all know what they are like). Any tips welcome.
Thanks
Marybeth

 

[Katharine]

Hello and welcome

I think we have quite a few members here with lupus and coeliac. Fortunately I don't have that in my list of woes :hehe:

I'm sorry to hear that your eyesight is worsening. Do they think it is lupus related?

I think most of us have a pretty big problem telling others and many of us just don't really. I am lucky to also have fantastic support at home. For other people I find that just being "nasty" (which I'm secretly quite good at :rotfl and saying "no" until they get that I'm not doing this, that or the other is the most important. I have a few dear friends who have never needed telling. They knew me before and somehow just understand. They are so lovely and "untiring", definitely keepers!

I hope you enjoy being here with us. There's a great bunch of caring people here on the boards and loads of experience as well.

bye for now,
Katharine

 

[Alma Calleros]

Hi, I aslo had problem with my eyesight it is all a part of Lupus and also the medications . I also have a teenager and a husband who can't believe that I can be sick , but the easiest way to show them is by just resting and sleeping not attending to their needs . They actually don't want to believe they are in denial. It will take time give them a book to read on lupus so they can learn "if they read it". Good Luck !! Find a support group in your area that will help you . One hour at a time life is so beautiful enjoy it. Take care ! LOL your way.
Alma

 

[sjink]

Hi Mary Beth

Welcome to the list.

I agree with Alma about teenagers (and adult friends who don't "get it") go to bed or lie on the sofa with a quilt on you. Don't make tea, do any house work and let them see you need rest. I finally did this with my step daughter and grandaughter. They turned around their behaviour pretty sharpish and are really helpful now. Partly my fault as I had to keep doing things and didn't think they would get done without my contribution ha ha. My grandaughter can cook for me, make coffee just how I like it and sometimes she just lies next to me and rests quietly too. She just needed to understand. And she has apspergers so if she can get it so can ordinary mortals I think.

I have fibbed a bit about the "how well I look stuff" to some people, to those who don't understand medicine and the body I say... oh that's vascular, lupus affects the vascular system (which it does) and gives my skin a rosy glow (doubt it but sounds good). That seems to work as I get some very worried looks then as people peer at my face. I don't get the lupus rash so unless I am moving around I look fit as a fiddle.

I also have some leaflets from LUPUS UK which I give people who ask about it,saying I am a bit too tired to explain it all, which often I am. I keep a collection box for LUPUS UK in the hallway next to the leaflets and it is slowly filling up!

Anyway... welcome, this list has really helped me the past couple of weeks. I hope it helps you too.
Love
Sara

 

[marybeth59]

thanks

hi
Thanks for the responses. My consultant has definitely linked my eyesight with the lupus, and I am back at the eyeclinic tomorrow, so might know more after that. Like sjink, I do not have the rash, so often looked well, as fatigue and aches are not always "obvious" to others, although some people can tell if I am having a bad day. I have leaflets and stuff which my husband has read, and he understands if I am unwell. My biggest problem is me really - especially telling colleagues. I either blurt it all out, or say I am fine, because I do not want to appear to be a hypochrondriac. Having had continuiing health problems over the last three years, but managed to keep working for most of that time, I find it hard to say anything now. Like I said, the problem is me :lol::blush:
I will keep looking on here and all shared experiences are more than welcome.

 

[specialk16]

Wow Mary Beth,

I think I could have written your post. LOLOLOLOL... Yeah this disease does suck and I WAS in denial the 1st couple of years.... Hang in there... Welcome to the site... there are some awesome people on here that totally know what you are going through.