7 Simple Tips to Make Living With Lupus Easier

When I was diagnosed with lupus 16 years ago, I had no idea how the disease would affect every area of my life. Although I didn’t use a survival manual or magic potion at the time to answer all my questions, I had a good life experience. Today, I see lupus as something that has transformed me into a stronger, more compassionate woman who is happy with the little things in life. It also taught me a thing or two—or a hundred—about how to live better when dealing with a chronic illness. While it’s not always easy, sometimes it takes a little bit of different and outward thinking to find what works for you.

Here are 7 ways to make living with lupus easier

1. I collect rewards for keeping a diary

Years ago, my husband repeatedly suggested that I record my daily life. At first I resisted. Living with lupus has been hard enough already. I started using it so as not to break it. For twelve years, I never looked back.

The collected data was remarkable. I have years of knowledge about medication use, symptoms, stressors, alternative treatments I’ve tried, and remission seasons.

Because of these notes, I know what triggers my attacks and what symptoms I typically have before a flare-up occurs. A significant portion of the chapters I write in the diary see the progress I have made since diagnosis. 

2. I focus on my “can do” list

My parents labeled me a “carrier” at a young age. I had big dreams and worked hard to achieve them. Then lupus changed the course of my life and the course of many of my goals. That was frustrating enough, I added fuel to my inner fire by comparing myself to healthy friends. I spent ten minutes scrolling through Instagram, feeling defeated.

After years of torturing myself by comparing myself to people who don’t have a chronic illness, I’ve become more stable by focusing on what I can do. Today I keep a “to do” list that I constantly update and highlight my achievements. I focus on my unique goals and try not to compare my journey with others. Have I beat my habit of constant comparison? Not exactly. But focusing on my abilities has greatly increased my self-confidence.

3. I installed my orchestra

For 16 years living with lupus, I felt tremendously the importance of having a positively supportive environment. This issue is important because I was disappointed with so little support from close family members.

My circle of support has grown over the years. Today, my circle of friends and support includes distinguished family members and my church family. I often refer to my environment as the “orchestra” because each of us has different characteristics and we fully support each other. Thanks to our love, courage and support, I believe we make beautiful music together that replaces anything negative life may throw our way.

4. I try to eliminate negative thoughts

I remember being particularly tough on myself after a lupus diagnosis. Thanks to my self-criticism, I blamed myself for my old habit of lighting candles at both ends of the church. Physically, this is a condition that causes exhaustion and psychologically embarrassment.

Through prayer and every Brene Brown* book on the market, I felt a little bit better physically and psychologically by loving myself. Today, I focus on positive thinking, even if it takes effort, saying positive words like “You did a great job today” or “You look beautiful” has definitely changed how I see myself.

*Personal development book author.

5. I felt the need to rearrange my life

Chronic illness has taught me not to live my life on schedule. After dozens of missed opportunities and rescheduled life events, I slowly started to lose the habit of controlling everything. When my body couldn’t meet the demands of the 50-hour workweek as a reporter, I switched to freelance journalism. When I lost most of my hair to chemotherapy, I used (and loved!) wigs and extensions. When I turned 40 without a baby of my own, I started on the path to adoption.

According to lupus, organizing my life has helped me get the most out of my life, freeing me from feeling frustrated and stuck by things that didn’t go according to plan.

6. I took a more holistic approach

Cooking has been a big part of my life since I was a kid (what can I say, I’m Italian) but I didn’t get the food/body balance in the beginning. After battling intense symptoms, I embarked on a journey of researching alternative treatments alongside my medications. I think I’ve tried everything: juice, yoga, acupuncture, functional medicine, IV hydration, etc.

Most of my life I depend on food, chemicals etc. I had an allergy and food sensitivity test done by an immunologist because I was overactive, dealing with allergies. With this knowledge, I worked with a nutritionist and revamped my diet. Eight years later, I believe clean and nutrient-rich foods are still giving my body the daily support it needs while dealing with lupus. Have dietary changes made me better? No, but they have greatly improved my quality of life. My new relationship with food has made my body better.

7. I find healing in helping others

There have been times in the last 16 years where lupus has been on my mind all day long. It was consuming me, and the more I focused on it—especially “whatever”—the worse I felt. I have always enjoyed serving other patients. At that time, I was being treated at the hospital.

My love for helping others be happy on a blog I started eight years ago called LupusChick… Today, she supports and encourages more than 600,000 people a month about lupus and related diseases. Sometimes I share personal stories, other times I don’t know what special situation you have that might help others by telling someone they love, providing support, telling someone they’re lonely, but I believe sharing will greatly affect both the recipient and yourself. There is no greater joy than knowing that you have positively impacted a person’s life.

Conclusion

I discovered these life tips by traveling a long, winding road filled with many unforgettable high points and dark, lonely valleys. Every day I continue to learn more about the legacy that matters to me and the legacy I want to leave behind. Although I was always looking for ways to overcome my daily struggles with lupus, applying the above practices changed my perspective and made my life easier in some ways.

Today I no longer feel that I have lupus in the driver’s seat and that I am a powerless passenger. Instead, I have both hands on the wheel and a great, big world that I plan to explore outside! 

Marisa Zeppieri 
LupusChick.com 

Source: healthline.com

Abdul Arif Kerim ÇALIŞKAN

Dünyayı kelimelerle ifade etmeye başladığımdan beridir harflerle hemhal biriyim. Mekatronik temelli eğitim hayatımın perspektifinden ağaçların, çiçeklerin, hayvanların mekanizmalarını çözmek üzere tefekkür etmekteyim.

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