Life with Lupus: My Journey Towards Resilience & Awareness
Hello lovely readers! I hope you're all enjoying the summer months. Today, I want to open up and share something personal with all of you. Recently, life threw me a curveball when I received a life-changing diagnosis - Lupus (SLE), an autoimmune disease that has turned my world upside down.
What is Lupus?
In case some of you are unfamiliar, Lupus, or Systemic Lupus Erythematosus (SLE), is an autoimmune condition where the immune system mistakenly attacks healthy tissues and organs, leading to inflammation and a wide range of symptoms.
This complex and unpredictable disease can affect various parts of the body, causing joint pain, skin rashes, fatigue, and sometimes more severe complications involving the heart, kidneys, or other organs.
The Shock of Diagnosis
As someone who lives a fit, active, and health-conscious life, this diagnosis hit me like a ton of bricks. It took time to process what it meant for me and how it would reshape my life. Currently, it translates to being sensitive to UV/sunlight and experiencing a severe rash when exposed to the sun, extreme fatigue, headaches, joint pain, digestive issues, and inflammation.
Navigating the New Normal
For a while, the unexplained rash (see the images) made me feel like my skin was on fire. It persisted for nearly two months before I finally received the correct diagnosis and medication.
While getting the right diagnosis was a relief, it marked the beginning of a new chapter in my life - one where I needed to prioritise self-care and manage my condition proactively, above pretty much anything else.
Embracing Resilience and Positivity
Living with Lupus means adopting a resilient spirit and embracing a positive outlook on life. While there is no cure for Lupus, with the right care plan and medication, it can be manageable for the long term. My goal now is to spend time healing, learning, and finding ways to keep symptoms in remission, so I can continue living a life I love.
Challenges and Lessons
One of the most significant challenges I've faced so far is learning to incorporate more 'rest time' into my daily routines and finding ways to be still. As I navigate this journey, I've come to reflect on how managing chronic health conditions can profoundly impact our outlook on life. It has been a learning experience, and I believe my journey might inspire others who are dealing with similar situations.
Taking Control of My Health
Instead of being passive, I've chosen to take an active approach to manage my condition. I am currently working on my own anti-inflammatory and autoimmune support nutrition plan, where I will experiment with different strategies.
I'll make sure to keep all of you updated on my progress and share the results. Coping with the limitations has been tough, especially not being able to enjoy the outdoors uncovered or ride my beloved bike.
The Power of Writing and Knowledge
Throughout this process, I've found that journalling helps me cope with the ups and downs and aids in managing frustrating memory problems that can arise due to Lupus. I keep my journal nearby at all times and can just notes things as I think or feel them!
Additionally, I've discovered some inspiring books that have helped me learn more about Lupus and how to navigate life with it, given the limited research available.
Sharing My Journey to Raise Awareness
As challenging as it is, I feel it's essential to share the reality of my experience, even if it means showing the most awful pictures of my rash-covered self. By doing so, I hope to raise awareness and understanding about Lupus and its impact on people's lives. I believe that sharing our stories can open up more conversations about autoimmune conditions overall.
Thank You for Your Support
Before I wrap up, I want to express my heartfelt gratitude to all of you for your support and for being a part of my journey. As I continue to embrace life with Lupus, I invite you all to join me on this journey of resilience and awareness. Stay strong, resilient, and hopeful. Tara xx