Nice to meet you all. Any tips or tricks to deal with this lovely, lovely butterfly disease that I need to know?

[Raeia]

Hi. Can't believe it took me this long to find this site. I was diagnosed back in 2016 at 25 with severe Lupus SLE, and I'm studying here in the UK, hoping to stay permanently because I love it here so. The lupus certainly makes life more interesting, I've noticed. Nice to meet everyone. Anyone know of any sort of tips or tricks that help make this a little easier to live with?

Thank you!

[Spanielmadlady]

Welcome 👋 to our forum. Be kind to yourself, pace yourself and sleep as much as possible. Cover up when outside factor 50+ ,long sleeves and hat.keep stress to absolute minimum which may be quite hard with your studies.google the spoon theory.living with lupus takes alot compromises and adjustments in every aspect of our lives but it is doable.Good luck with all your studies and ambitions...go girl xxx

[svfarmer]

Welcome to the group x

[Apricot100]

Welcome! Every individual case has its own challenges but Spanielmadlady gives some sound advice.

Definitely research the spoon theory. It's given me understanding but, often more importantly, helps explain some of our situation to friends and family.

Good luck with your studies and great to have you here x

[rosebud52]

Welcome Raeia, Spanielmadlady has given very sound advice, stay well x

[BeeHoneyB]

Welcome,

Sound advice from Spanielmadlady.

Also try to laugh sounds bit strange! but I’ve found keeping humour helps me. The illness can be awful but I refuse to allow it to chip away at my humour!

Take care 🤗

[Kevin53]

Hope that you have had a peep at the Lupus UK website. Best wishes Kevin

[Pumpkin2009]

I agree with all the great advice and a sense of humor helps me a lot. Also, appreciating the peace I get from the wonderful things of nature around us.

Healing hugs.

[TwoH]

Welcome! It’s a long road with twists and turns and every single one of us is different but with similar experiences. Be your own advocate!! I cannot stress that enough. You must use your voice to speak up for yourself. This is your journey and your life so never be afraid to ask questions and if something doesn’t feel right, say something.

This forum is wonderful! You can learn a lot and will receive support here.

[Neriah]

Totally agree with all said above. I have two quotes posted up on my office wall: 'Plan, Prioritse, Pace' and one which , believe it or not, turned up in a dream , that I should always try to find ' creative , compassionate and proportionate solutions to prevailing circumstances' - which is basically the same idea with frills on.