Living With Lupus

[LupusGirly]

Living with lupus for 28 years, disease has now progressed to Lupus Psychosis. Sometimes I feel like I’m losing it. I’ve got wonderful doctors and getting the proper treatment. I’m so sick-n-tired of people asking “How are you?”, I always reply “fine”. I am not fine and just want to scream. I know a lot of people with illnesses deal with this as well. I hope to one day write a book about my lupus journey and not being “fine”. Anyone else dealing with similar issues?

[MAS_Nurse]

Hi there,

Welcome to our community. Hopefully, you will find just how wonderfully supportive folks on here are too. Did you know that there are specific Health Unlocked Lupus community forums, you can be a member of multiple groups? Heres' the link the UK one:

LUPUS UK: healthunlocked.com/lupusuk And here's' another:

Lupus support: healthunlocked.com/lupus-su....

I'm not qualified to answer your specific questions about your conditions but have you checked out the main LUPUS UK website as there is a lot of useful information including a nurse guide about Lupus psychosis if this help at all. Here's the link:

lupusuk.org.uk/

lupusuk.org.uk/medical/nurs...

In the meantime may yourself familiar with our site, and check out our Pinned Posts section. Keep our International crisis support helpline handy.

OK folks, let's give this new member a hearty welcome!

Keep posting.

Take care,

MAS Nurse

[EmmyLoop]

Lately I've been going through quite a few things that are super troubling. Sometimes, I have no idea how I'm coping. I desperately want and need to talk about them, but when people ask if I'm ok, and I'm not ok, I say "fine" because I'm not ready to talk about it or I don't feel like talking about it. Also I get afraid if I talk about it I'm going to get so exhausted that I will just disappear (or probably unbelievably depressed.) I'm at a crossroads where I am pretty sure how to start an approach to healing, but I'm so angry that I've had to work so hard to recover from so many OTHER wounds these people have caused, I have no interest in getting started. But I am suffering and my day to day life is suffering, so I know I MUST start talking about it.

Does any of this resonate with you? Or maybe I got selfish and off track and made it all about me. Sorry if I did.