Feeling a bit overwhelmed

[AKLA-Bristol]

Hi all,

So after a very confusing and painful 18 months, I have been diagnosed with Lupus.

I already had been diagnosed with APS in January so had already processed living with a life changing autoimmune disorder but I always felt it wasnt quite the end of my medical journey.

Fast forward to March and it would appear at 28 years old I have serve SLE and strangely only show symptoms of this with hair loss and organ problems.

I'm feeling very overwhelmed and while the rheumatologist here in the hospital are amazing and are treating the lupus hard (as its attacking my heart and lungs) I'm feeling quite lost and scared for the future.

I am also feeling quite alone. Noone in my family has lupus (thankfully!) And I have to be honest I didn't or maybe still arent sure what I am dealing with.

I am hoping I can still return to work and university and be a good mother.

It's just......a lot

[Shorthouse]

Love to you .Try to be as healthy as you can with diet No prossesed crap (it’s everywhere)eat as basic as you can .it will help you.listen to your body DONT push yourselfx

[AKLA-Bristol in reply to Shorthouse]

Thanks for replying! Yes I've been doing some reading while in hospital about foods to help especially with energy. It's all a bit of a battlefield at the moment but I'll get my head around it eventually I think

[baba]

Lots of GOOD information on Lupus UK main website

lupusuk.org.uk/

Also for APS see:

ghic.world/

healthunlocked.com/hughes-s...

[Treetop33]

I've got Lupus and APS, though no organ involvement. It's a lot to take on but you will come to terms with it over time. The meds do help. As people have said, so does diet. You need to fight for the right medical care and keep trying to understand your own illnesses. Lots of support on this forum, so never be worried about posting for help and ideas xx

[panda2]

Oh, you dear thing. It really is...a lot. Especially at 28. That feeling of being overwhelmed sounds like the completely right reaction. Heart and lungs being attacked is so very much to get your mind around. That is awfully serious. It's a relief to hear you are being treated so well in hospital at least.

Others have given some great suggestions for reading material and you've obviously got a strong spirit to have reached out here. Sometimes, in the darkest parts of new illness, a place to share can be our best medicine. Hoping you feel some comfort as time goes on.

Panda x

[Harpie513]

Hi,

I am so sorry To hear your pain. You are not alone.

I feel scared and awkward, and alone.

My doctors, bless their tiny hearts, are lost. They still aren't sure about Lupus. One week it's fibromyalgia, and the next, well maybe lupus.

Just hang in there and take care of you.

Anna

[Paul_Howard Partner LUPUS UK]

HI AKLA-Bristol ,

Welcome to the LUPUS UK Community Forum. I am really glad that you have found us and I hope that you will find this a helpful place for information and support.

It is wonderful to see that you have already received some supportive and helpful comments from other members of this community. If you would also like to chat to other people with lupus in a support group meeting or over the telephone, please let me know as I can provide you details of other services we have available.

I'm glad to hear that you have a good rheumatologist looking after you. I hope that with treatment they can get your symptoms under control soon.

If you need anything, please let me know and I'll do my best to be of assistance.