My soon-to-be husband made me a salad full of all the things that are said to help you go into remission how sweet

[Julietsmombless2015]

Perfect timing 2 I'd worked in the house all day and I'm starving to death and this was like the perfect thing just so thoughtful to pick up everything from the store and take my list of foods that I'm supposed to eat with him and make me a salad after being gone all day himself I just thought that it was really sweet and it made me feel good I had a talk with him so he has a better understanding that this is just the way life is at least for a while I'm going to be sick I'm not going to feel well and I know that he wants me to feel good too and it causes conflict with us but he's really starting to understand a little bit more and I'm actually having him go to my next appointment with me so that the doctor can talk to me with him there so he can get a better understanding of what this is how it feels and the symptoms that go along with it it's helping our relationship that we had this discussion we are getting married very Septemberonmblr 10th the day after my birthday

[Shadows-walker]

Wonderful you have his support and understanding ! 😄 Hang on to him he's definitely a keeper xxxxx

[Julietsmombless2015 in reply to Shadows-walker]

We have a daughter even though I was told that I could never have children we tried and we had a daughter the first time we ever tried and we've been engaged for a year and we will be married this September 10th so he's definitely a keeper he said that I can never get rid of him LOL

[lupus-support1 Administrator]

It is so important that your partner/spouse/family is supportive. To have someone whom you can feel that you are "understood" cannot be over estimated.

I should imagine that you tell him how this makes you feel. A partner/spouse having to watch someone they love suffer, is credibly difficult and painful. Spouses also need support too.

I am very happy for you!

With good wishes,

Ros

[Julietsmombless2015 in reply to lupus-support1]

We had a lot of conflict I was almost scared because we're going to get married in a couple months but he had spoken to his mother and his mother tried to explain to him the way I feel how I feel like I can't complain to him and that he doesn't understand and that he just gets angry when I'm when I'm sick but it's because he loves me but still to me it just felt like he was angry at me for being sick I felt terrible but he is being much better now about it still understanding it helps a lot it makes things iety of us getting married just disappear which is really great because I have a lot of anxiety about it I needed him to know this wasn't going to change or go away but there's no cure

[lupus-support1 Administrator in reply to Julietsmombless2015]

Many partners behave in this way and there are many reasons for doing so: anxiety, frustration and his feeling helpless and powerless. He has to understand that being ill is no one's fault and has to be dealt with by both of you.

Like any marriage both people have to work at the relationship. Talking is very important - both of you have to listen and understand the other person.

It is also important he comes with you to your medical appointments so he can learn about lupus. Knowledge can be empowering and therefore both of you should have questions prepared to ask your doctors.

With good wishes,

Ros

[Freckle1000 Volunteer]

Do you have some close supportive relatives to include in this process of helping you out and learning about your Lupus ? The greater the Lupus 'aware' support network you have, the more secure you and your soon to be hubby will feel.

[Julietsmombless2015 in reply to Freckle1000]

I do I just hate explaining the symptoms and why. It's draining after a year.

[Freckle1000 Volunteer in reply to Julietsmombless2015]

Yep.

You're definitely not alone in having trouble getting the people around you to understand Lupus and how it feels - Unfortunately its an extremely common problem. Its a complicated illness that often cant be seen. It also has the added bonus of us sometimes looking extremely healthy - just at the very time we feel our worst.

Might be easier to just say - I'm sick right now - can you help me ?