Hello

[Liz2304]

I was only recently diagnosed with SLE this October, after battling for 15 months with various symptoms. After several blood tests we finally have my diagnosis. I am currently going through such a bad flair up ( day 8) I have been signed off work due to my mental health not being great either. I just need to speak to people going through similar to me and get some tips to help me . 😊

[RosieA]

Welcome. I am so sorry you are going through this, such early days in your diagnosis. You will find some wonderful people on this site who will offer you much advice.

I think my main thoughts for you at this stage would be to learn to be kind to yourself. You can't fight through a flare, it will just exhaust you further. Rather think about pacing yourself. Do something small, then have a cuppa and repeat if possible. This will give you some sense of achievement but not end up with you in tears. Sounds a small thing to do but it took me a long time to get this into my head, I just wanted to get on and do all the things at the pace I used to be able to do them. I would then spend all evening blubbering, with an aching body and massive fatigue, over supper- not great.

So be kind to yourself, learn to pace and finally keep reaching out as you have. Hope that helps a little. x

[Liz2304 in reply to RosieA]

Thank you so much for your reply I just need to speak to people dealing with the same as me for guidance and support 😊

[StriatedCaracara]

Hi Liz2304

Welcome. You will be able to learn a lot on this forum.

Here are links to video playlists that I found useful. Just pick any subject that interests you maybe relating to symptoms you have. I limited myself to one video a day. Some have repeated info that can scroll past.

Kaleidoscope Fighting Lupus:

healthunlocked.com/lupusuk/...

Lupus Foundation of America:

healthunlocked.com/lupusuk/...

[StriatedCaracara]

I found WRENS really good and wish I had contacted them earlier. healthunlocked.com/lupusuk/...

My GP also social prescribed. I found reorganising interests hard, as well as people understanding, and I was a carer too, and was exhausted.

It can be really hard at work. At lunchtimes knees hurt so much could not go out the office in case got stuck in town, and then in the afternoon I felt so ill and just had to wait and try and work, watching the clock...it was aweful.