For World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog.

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My life with lupus – living to the fullest – “Don’t stop me now” by Claudine from Belgium

‘What did you do last night?’ I asked myself when my alarm clock went off in the morning.  And to clarify, I had done nothing special during that night.

But like every morning I wake up with the headache, the flu-like feeling and the rigidity of my body. The usual stuff, like I always tell my husband when he asks me how I am. But this time it felt as if I had run a marathon. I hadn’t J.

I knew this was coming.  My wolf had warned me with his subtle signals.

‘You’re going too far, you are ignoring me too much’. He admonishes me with his finger in the air. And I know, I realize it. But it remains so attractive to be able to keep up with everyone. Without being stopped, without being slowed down.

After a few minutes I pull myself out of bed. Everything goes very slow. I find it difficult to think, to move and to breathe. ‘I’ll have to be patient with myself today’, I mumble quietly.

In the distance I hear the voice of my son Lenny.  And at the end of the staircase, he is waiting for me with his arms wide open.  I feel so blessed. His big hug creates the first miracle today.

At our breakfast table I close my eyes while I enjoy the scent of my coffee. Hmmm…this is another blissful moment.  And a big smile appears on my face. Because my sandwiches with sprinkles that I’m making will taste so good with my coffee.

My mobile beeps and in a blink of an eye my face brightens up. It is a text message from my daughter Lisa. She is on a school trip this week.  Her message makes me laugh. I miss her terribly! I can’t wait to see her again and to take her in my arms.

In the background I hear the song “Don’t stop me now by Queen, with the ever-inspiring Freddie Mercury. It is still one of my favourite bands.

I turn up the volume of the radio because it’s a great song, it’s exciting and it makes me incredibly happy! Really, you can’t stand still on that song, can you?

And the small dance movements that I’m making, also help the stiffness in my body.

I sing along with the song:

“Don’t stop me now…”

“I’m having such a good time, good time…”

‘Uh, good time? ‘ I think to myself. No, not really no.

However I’m singing all the air out of my lungs.

Absurd, isn’t it?

You know, in my mind I’m not sick, on the contrary. In my mind I’m unstoppable.

I read once in a newspaper: “Look more into your talents and less to your limitations.” That’s wisely said. Often we are too much focused on the things that we can’t do. And it inhibits us.  Because, it is mostly our thinking that limits us.

Although my lupus is still quite active, I feel this fire inside me that can’t be diminished. So I had to find something that I could do with my talents and within my limits. Something that made me feel useful again. Something that I could do at my own pace.

A couple of years ago I started writing about my invisible illness and I share it in my blog http://wolfandthecity.blogspot.be. It creates more awareness and more understanding about living with arthritis, living with lupus. And the most beautiful thing about sharing these little parts of me is that I’m also helping and supporting other patients.  And this still gives me a lot of warmth in my heart.IMG_0025_2

And that feeling, helping others with my experience as a patient gave me the impulse to do more.  So now I have become a patient-partner in research and a patient representative. I’m so happy that I can contribute and speak up for those who are temporarily unable to.  I can hardly describe in words the powerful energy when we are working together in a patient panel or at a convention. Putting our hands, our thoughts and our energy together.  United we are changing the world into a better place for patients with arthritis. It gives me so much mental energy and friendship in return.

There was a time when I used to postpone the things I wanted to do.

Because of my illness…But now I just do them! So I’m learning to play the piano and I love it. It stimulates my brain again.  And recently I’m into yoga. It helps me to regain strength. And during the drama classes I’m learning to express myself again.

And all this makes me feel so alive again.

You know, I am aware of my sick body, I am aware of my ‘limitations’.

Every morning I get up with my wolf fur. And every day I scan my limits.

What I can do and what not. What will work today and what will not.

It is what it is…

But besides being ill and having daily pain, I experience also very beautiful, intense moments of happiness.  Even if they are only fractions, a few hours, it doesn’t matter.  I’m especially grateful that I’m experiencing them.

My focus is on the things I can do, not on what I can’t.

And even though my wolf often tackles me in all my enthusiasm…

Even if I tread my path with much trial and error.

It will certainly not stop me to follow my heart and to do the things I’m passionate about. It will certainly not stop me to be intensely happy too.

Don’t stop me now…

You are right Freddie.

Show must go on!

That’s the spirit ;-).

Claudine Goyens is a member of CIB LIGAUnknown

 

 

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1 day ago
LUPUS EUROPE

Only one day left for the great day!

🌟 Don't miss our webinar on digital health & patient care! 🌟

⏲️ Time is running out to secure your spot at our transformative webinar.

💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.

Here's a glimpse of what awaits you:

✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
✅ Explore the boundless potential of technology in advancing healthcare.

🗓️ Date: September 28th (tomorrow!).
🕗 Time: 20:00 CET.

This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.

Join us and empower yourself with the knowledge that can transform lives! 📱🏥

The webinar will also be streamed live on Facebook. 🎥

Secure your spot now by registering:
📧 Email: secretariat@lupus-europe.org

If you have registered for Zoom already, please ensure you attend via Zoom 🤗.

See you at the webinar!
... See MoreSee Less

2 days ago
LUPUS EUROPE

‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.

According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.

👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs.

Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:

1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. It's a win-win for your health!

2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.

3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs.

4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.

5️⃣ Remember, it's never too late to start. Exercise is safe and a step towards enhancing your health, even if you've been less active before. Every step counts!

6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.

🦋 If you're dealing with lupus, know that exercise can be a game-changer for you too, especially for managing symptoms and enhancing your quality of life.

📷 Embrace the power of exercise in managing lupus and share your journey using #kicklupus.

Let's inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪

ard.bmj.com/content/82/1/48
... See MoreSee Less

‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.

According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.

👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs. 

Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:

1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. Its a win-win for your health!

2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.

3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs. 

4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.

5️⃣ Remember, its never too late to start. Exercise is safe and a step towards enhancing your health, even if youve been less active before. Every step counts!

6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.

🦋 If youre dealing with lupus, know that exercise can be a game-changer for you too,  especially for managing symptoms and enhancing your quality of life. 

📷 Embrace the power of exercise in managing lupus and share your journey using #KickLupus.

Lets inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪

https://ard.bmj.com/content/82/1/48Image attachmentImage attachment+1Image attachment

1 CommentComment on Facebook

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1 week ago
LUPUS EUROPE

Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.

Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.

🔵This week, let's highlight the unique benefits of physical activity for individuals with lupus:

1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.

2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.

3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety.

4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.

5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment!

6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.

7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.

🔴 For individuals with lupus, it's essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.

That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ www.lupus-europe.org/me-lupus/

🌈 Your journey to improved well-being can begin with us!

Let's #kicklupus together!💪

Always consult a healthcare provider before beginning any exercise regime
... See MoreSee Less

Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.

Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.

🔵This week, lets highlight the unique benefits of physical activity for individuals with lupus:

1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.

2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.

3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety. 

4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.

5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment! 

6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.

7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.

🔴 For individuals with lupus, its essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.

That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ https://www.lupus-europe.org/me-lupus/ 

🌈 Your journey to improved well-being can begin with us!

Lets #KickLupus together!💪

Always consult a healthcare provider before beginning any exercise regimeImage attachmentImage attachment+6Image attachment
1 week ago
LUPUS EUROPE

Last Monday, we held an Interim Review Meeting online with our National Members. We were thrilled to see so many familiar faces! 😃

During the meeting, we gave an update on the progress of Lupus Europe initiatives and discussed priorities for 2024. We were also delighted to hear from our members about the great activities they are undertaking in their own countries and communities.

We were astonished by the passion and commitment of our members, and we are grateful for their continued support of Lupus Europe. We know that together, we can support each other as we work towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus💪.

We want to thank everyone who attended the Interim Review. Your participation and contributions were invaluable. We also want to remind you that our communication channels are always open. Do reach out to us whenever you need anything!

Together, we are stronger 🙌
... See MoreSee Less

Last Monday, we held an Interim Review Meeting online with our National Members. We were thrilled to see so many familiar faces! 😃

During the meeting, we gave an update on the progress of Lupus Europe initiatives and discussed priorities for 2024. We were also delighted to hear from our members about the great activities they are undertaking in their own countries and communities.

We were astonished by the passion and commitment of our members, and we are grateful for their continued support of Lupus Europe. We know that together, we can support each other as we work towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus💪.

We want to thank everyone who attended the Interim Review. Your participation and contributions were invaluable. We also want to remind you that our communication channels are always open. Do reach out to us whenever you need anything!

Together, we are stronger 🙌

1 CommentComment on Facebook

It was a beautiful and interesting meeting.Thank you all.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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