My name is Melina and I live in the easternmost, warmest, and sunniest part of Europe, the small island of Cyprus. I have lived with lupus for the last 21 years, most of my life, if you count that I am 37 years old. I have also made a dream come true and I want to share it with you. My dream was to run a 5km race wearing the jersey of the Cyprus League of People with Rheumatism (CYPLER) and to run for all people with rheumatic, musculoskeletal diseases. I also want to share with you my experience and my thoughts during the race. With faith in myself, with the support of the wider association (CYPLER) as well as the members of the lupus group I made my dream come true. My biggest “problem” all these years was my lack of self-confidence, as I was very late to join our association because of my beliefs. I will not forget my first acquaintance with the lupus group in the furniture restoration workshop; how much strength and confidence I gained from this workshop. Doing things outside the norm gave me pleasure and strength!

 

Running towards the dream

 

There I was walking in the park one day, watching others running. The thought came to me that with the right guidance I could do what I have been dreaming of for years, namely, to run long distance. To run a race, say 5km.

 

 

During the duration of the race, because it took place at10.45 am the heat and the sun were too much, it “stole” my energy and made the whole run hopelessly endless. When I came upon the first “refuelling station” that had water, I took a small sip to quench my thirst and kept the bottle for later. The heat in my body combined with the heat outside was becoming unbearable. In my mind were so many thoughts, but I was mainly thinking of the girls at the association (CYPLER), the people with lupus who cheered me on in this effort shouting “Melina go, go, go Melina go goooooo”. I shouted it too with so much intensity that I even encouraged my fellow runners and I also kept running.

 

Lupus patient running in the 5km Run Limassol 2024 race, waving and smilingI then realised I had passed the 2.5 km mark and that there would be another refuelling station soon! As soon as I got there, I took off my hat and doused myself with water.  I then tried to stay on the side of the running path that was in the shade.

 

When I saw the finish arch, I gathered all my strength and started to run harder! In the last few meters, I felt so exhausted. But the joy of completing the race was great! When I reached the finish line and actually realised that I finished, it struck me that, for that race, I overcame so many of the obstacles a lupus patient can have in her life: sun, heat, dust, the cold rainy days (the time of preparation), the fatigue, the mental strain of effort. I found a solution to all the problems that happened throughout the race. But the race isn’t a 5km one; this race is our whole life. The winner is not only the one who finishes first, but also the one who fights until the end with all their strength.

 

The Dream Continues

At this point I want to say that the dream continues!! I have been invited through a sports group on Facebook to another race in Crete; have signed up for the 10km and I have already started preparing! I will continue to run for all of you! Dreams are many steps taken together and they only become a reality one step at a time. Once upon a time I could not climb a single floor without stopping two or three times due to fatigue, but now I can!

 

Written by Melina Georgiou, Member of the CYPLER Lupus Group 

 

Disclaimer: The views expressed in this article belong to the author. Please note that sun exposure is generally contraindicated for individuals with lupus. For more information, read: Can I sunbathe with lupus

 

 

 

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3 days ago

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan  and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care.

https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
5 days ago

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health!
... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!

3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

1 week ago

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay
... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Dont smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDayImage attachment

1 CommentComment on Facebook

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

1 week ago

⁉️Do you have depression? If you do, know that it is frequent in #lupus patients.

🚨Our 2020 Living with Lupus survey unveiled that #depression ranks among the most common symptoms in lupus patients.

⚠️ Out of 683 patients (16.7%) who identified anxiety or depression as one of their most bothersome symptoms, only 315 (46.1%) reported using antidepressant or anxiolytic medication.

lupus.bmj.com/content/8/1/e000469

🔬 Recent studies support these findings, revealing that depressive symptoms affect anywhere from 11% to 71% of patients with systemic lupus erythematosus (SLE).

🔴 This common neuropsychiatric manifestation can be due to:

1️⃣ The illness itself.
2️⃣ Some of its treatments.
3️⃣ Other clinical variables, like fatigue or pain.
4️⃣ Sociodemographic factors.

👉 A specific study highlighted that #SLE patients report worse health-related quality of life, fatigue, anxiety, depression, and sleep quality compared to the general population and other chronic diseases.

‼️ Understanding these realities profoundly is essential for providing lupus patients with the necessary support and holistic care.

✅ It's crucial to encourage dialogue and action around mental health.

🌈 The #kicklupus campaign is committed to shedding light on these issues and driving positive change in the lives of those affected by lupus.

For more information and support, visit the member organisations section on our website and reach out to your national lupus organisation.

www.lupus-europe.org/lupus-members/
... See MoreSee Less

⁉️Do you have depression? If you do, know that it is frequent in #lupus patients.

🚨Our 2020 Living with Lupus survey unveiled that #depression ranks among the most common symptoms in lupus patients.

⚠️ Out of 683 patients (16.7%) who identified anxiety or depression as one of their most bothersome symptoms, only 315 (46.1%) reported using antidepressant or anxiolytic medication.

https://lupus.bmj.com/content/8/1/e000469

🔬 Recent studies support these findings, revealing that depressive symptoms affect anywhere from 11% to 71% of patients with systemic lupus erythematosus (SLE).

🔴 This common neuropsychiatric manifestation can be due to:

1️⃣ The illness itself.
2️⃣ Some of its treatments.
3️⃣ Other clinical variables, like fatigue or pain.
4️⃣ Sociodemographic factors.

👉 A specific study highlighted that #SLE patients report worse health-related quality of life, fatigue, anxiety, depression, and sleep quality compared to the general population and other chronic diseases.

‼️ Understanding these realities profoundly is essential for providing lupus patients with the necessary support and holistic care.

✅ Its crucial to encourage dialogue and action around mental health.

🌈 The #KickLupus campaign is committed to shedding light on these issues and driving positive change in the lives of those affected by lupus.

For more information and support, visit the member organisations section on our website and reach out to your national lupus organisation.

https://www.lupus-europe.org/lupus-members/Image attachmentImage attachment+1Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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