Saturday, 2 May 2020

ARRC World Lupus Day

Because I've been too lazy to do anything about World Lupus Day this year, I've stolen this from the Autoimmune Research and Resource Centre.
page1image19752288Lupus Lounge
Learning : 1 
World Lupus Day May 10th, 2020
Communication & Support
Open communication is an important management skill to practice with any chronic illness. Being able to confidently talk about lupus with family, friends, work colleagues and also health workers including your doctors can help to build self- awareness and improve health management outcomes. With a shared and informed understanding of your lupus symptoms and impacts, and knowing what strategies you can put in place to reduce these impacts can significantly improve your overall well being.
The first step is to increase your own understanding of what lupus is and what it means for you. This involves learning about how to access and assess information as reliable and relevant. Next, learning how you can accommodate lupus into your daily life by being an active self manager is vital. These steps are a large part of developing skills to communicate confidently with your medical team, family and friends, as well as other people living with illness.
To help you improve these skills ARRC has put together a short series of reference materials from available websites and also past ARRC-hive publications that you may find helpful. It is hoped that by increasing your understanding of your individual symptoms and symptom impacts and learning how to voice your own needs you can better share your lupus experience and plan for a life accommodating your lupus and its symptom spectrum without allowing your lupus to take over your life.
A brief description of lupus
https://www.autoimmune.org.au/wp-content/uploads/2020/04/The-many-faces-of-lupus-1.pdf
Critiquing information
https://www.betterhealth.vic.gov.au/health/servicesandsupport/finding-reliable-health-information
Being an active self-manager
https://www.autoimmune.org.au/wp-content/uploads/2020/04/Being-an-active-self-manager.pdf
Reaching out for support
https://www.autoimmune.org.au/wp-content/uploads/2020/04/Cafe-conversations.pdf
Doctor-patient relationship
https://www.autoimmune.org.au/wp-content/uploads/2017/06/Directors-message-Doctor-patient- relationship.pdf
Talking about difficult things
https://www.autoimmune.org.au/wp-content/uploads/2017/06/Directors-message-The-things-we-dont- talk-about.pdf
https://www.autoimmune.org.au/wp-content/uploads/2017/06/Sex-and-Intimacy.pdf

A personal story
“The Spoon Theory”, by Christine Miserandino, that describes how people dealing with chronic illness such as lupus deal with fatigue and energy reserves daily. Miserandino lives with lupus. https://outline.com/F5xh5V
https://www.youtube.com/watch?v=jn5IBsm49Rk
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Autoimmune Resource & Research Centre is a not for profit charity helping people with lupus to live well. www.autoimmune.org.au
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