Focus on your wellbeing
Living with scleroderma means facing challenges in everyday life, not only when it comes to finding the right treatment as treatment is essential for each individual case, and your treatment is coordinated by your physician.
But living with scleroderma can also impact your mental wellbeing.
Here is a video with counsellor Nathan Burt, who discusses how to address your mental wellbeing: try writing, painting, go for a walk or do some gentle gym exercises.
Mindfulness is a way to help you to stop up and pay more attention to the present moment, whether it is pain or stress or anything else happening around you right now. It allows you to become aware of the enormous flow of thoughts and feelings you experience while having a chronic disease as scleroderma.
Doing gentle yoga or a walk can be a good way to make it easier to cope with an over-busy mind.
Also, there are many good programs such as apps that can help you focus on your breathing. On your smartphone look for apps with mindfulness – there are many different versions, some for free and some you have to pay for.
If you are more into podcast, you can find many useful in this article: https://www.verywellmind.com/best-meditation-podcasts-4771686
Other steps to mental wellbeing
- Connect with other people. By talking with others about your thoughts you can get emotional support, but it can also allow you to support others.
- Be physically active. Go for a walk, swim, bicycle – what suits your scleroderma best. Your physiotherapist can help you find the right solution.
- Learn new skills or pick up forgotten hobbies
- Give to others – your knowledge, volunteering etc.
Wellbeing and COVID-19
Having a chronic disease during the corona pandemic is a huge challenge for many. The spread of the disease is big and forces the population to maintain social distancing. The stories in the news are many and can cause all to feel anxious or distressed.
The social distancing and for some even quarantine can feel even more severe for those with chronic diseases like scleroderma, as the COVID-19 can be very serious if catching it.
WHO is advising to provide practical and emotional support through informal networks (families) and health care professionals.
Stay connected by using online platforms like Zoom, Microsoft Teams, Google Meet, Facebook Messenger or what platform you prefer. You can share meals, have a cup of coffee, doing exercises together this way. A simple phone call is also appreciated.
And sometimes the COVID-19 information flow can be too overwhelming. Reduce your time on the medias.
news & events
Are you living with diffuse scleroderma?
Would you like to be involved in a clinical study testing a new investigational drug for use in Diffuse Scleroderma?
If so, you may be eligible to take part in the DECODE Scleroderma Study
FESCA is proud to be a partner of a the new This is Living campaign launched last month by Boehringer Ingelheim.
We are happy to share with you our latest newsletter. Read about World Scleroderma Day 2021, projects, our next world congress and more.