Please welcome emusedone (Susie)

Hi Susie,

Welcome to the forum. This place is a wonderful support group and you don't even have to leave home to make friends with a group of folks who are going through the same thing you are. We can all identify with feelings of guilt!

It sounds like your husband doesn't really understand what you're going through, and being alone in a new city must be so hard. I've lived in my city for over thirty years, and yet lupus has made me feel so very isolated so I imagine it must be doubly hard for you. It took me a long time to get my husband to really understand what I go through and I finally printed off a thread from this forum that dealt with the awful fatigue we get. When he read several pages of everyones comments he finally got it. But we have to revisit the whole topic from time to time.

Let us know more about you. I hope you'll become part of our little family and that you'll make some new friends here who will help you feel more connected to people who care.

Take care,

Pat

Hi Susie--
I'm glad you found this forum. the people here are so wonderful and they have helped me so much and there is always someone to talk to here it seems. I understand the move. I'm very isolated, moving to where my boyfriend could work and we could afford to live, and it is extremely rural. I'm very isolated and cut off and this forum has really helped me. I can relate with the guilt and the excuses and the family just not understanding and it is so hard to explain to them how you feel, how tired you get, how painful, stiff, nauseaus, etc all the things that you can feel that get worse with activity sometimes. And the thought of running strong, being really active, for me is terrifying. But you shouldn't feel guilty, though I know sometimes we cant help how we feel, maybe not so much guilt as sadness, but either way, it's not your fault and they will come to understand with time, and this is great place to talk to people about it. Thanks for joining and I hope things work out for you and your family.

Wow!  I just happened along my official welcome post!!  Thank you all so much!  Yes, I am SO happy to have found this forum.  Living like this alone isn't healthy in itself!  No, my husband isn't the most understanding OR helpful, plus he is younger than I as well, so maturity plays a large part in his lack of compassion on any level.  I just feel for everyone that has this stupid disease and have such a heart for everyone because I know, on some level, what they are experiencing.  I just never have been able to talk to anyone about it because I have always had to "act" well, but it has gotten too difficult and I don't care to act well because I can't and it is too dangerous to my health. Plus, when you end up in the hospital, or have a seizure, or go on prednisone, or can't get out of bed, it is hard to deny you've got a chronic illness.  So I am taking steps to seek support, talk to others, and learn ways to cope with the emotional problems as well as the physical that lupus brings on us.  I want to live, even with the pain, I want to live and I don't want to have to try and hide the pain or the fatigue so that everyone around me is happy and can do the things they want to do.  So this forum is wonderful to network with others who endure.  I admire everyone who has to deal with this disease, and just keep on keeping on! Thanks again for the wonderful welcome!!!  Susie

Hi Susie, Huge HUGS and welcomes! I'm sorry I didn't post sooner. I been taking a couple of days off. I can't imagine what I can add to this post that the others have not already said. Like at my church the pastor says "The first time your a visitor after that your just home folk!" So welcome home! Looking forward to hearing more from you!
hugs
carol