‘Life is a river’
Sandra tells us the story of her lipo-lymphedema illness. She is one of our first #LipödemMutmacher.
Even as a child, I was often in pain or had severe swelling in my legs. In the mornings, I had to take the bus for a long distance to get to school – the floor heating was practically torture. When I accepted a job at the European International School in the Philippines eight years ago, my illness downright exploded in the tropical climate. It was there that I first got the lipedema diagnosis by a German doctor.
Since then, I’ve learned to appreciate my own health – it’s the most important thing, after all. Stressing yourself out is just not worth it. You have to enjoy life. I have also realised very quickly who my true friends are as they stuck with me throughout the early years despite my illness. While that did hurt on one hand, it was also a positive experience that has shown me who genuinely cares about me.
‘Since the diagnoses, I’ve genuinely learned to appreciate my health’, Sandra says, relieved.
I’ve been doing ballet for about five years. With all my pain and the lumps, I would never have thought that I’d still be able to do this. It’s a lot of fun and is genuinely strenuous exercise with a lot of leg work. I have a really awesome ballet teacher who keeps encouraging me, even if I turn up to the sessions wrapped in bandages. I even got a chance to dance on stage in the background with the Russian National Ballet – they were looking for some additional local dancers for their performance of ‘The Nutcracker’.
You definitely develop a different kind of body awareness
I work as a freelance educator, experiential educator and body therapist in the Allgaeu, primarily with mentally ill people and people with an addiction. On the side, I also care for unemployed adolescents or do things like organising jousting games for children at playgrounds. Anything that has to do with people.
I only completed my additional apprenticeship to become a ‘body therapist’ in mid-2014. It has taught me a lot – from breathing techniques and meditation to dealing with myself, my own body and also with the pain. You definitely develop a different kind of body awareness. I think, with this disease, something’s just not quite aligned within the body. Thanks to the tights, you have a much more shallow breathing and breathe less into the belly. I have learned to let the breath flow through my body more. With my apprenticeship, I ultimately learned how to be more aware of my legs.
My special wellness tips
- Have fun and continue to try new things. I love walking barefoot or going swimming in a cold lake, for example. I’ll do anything as long as it’s fun and makes me feel good.
- Be active! If I feel unwell, my friends and my dog help me motivate myself and go get exercising. I also know that I’ll feel much better after having done some exercise.
- Don’t be embarrassed! People who stare are only shallow and not worth a second thought.
- Become one again with your body! Meditation and breathing exercises can help to manage the pain and develop a whole new body awareness. Personally, it really helps me to take conscious, deep breaths right into my belly and leg area. It can even help to speak to your own legs and ask them what’s wrong while simultaneously putting cream on them or doing vein gymnastics so that they feel better again.
- On hot days or when I simply need some relief, I treat my legs to some cold-water therapy. I have a tub on my balcony which I fill with cold water and then I walk up and down the tub.
Sandra is one of the first #LipödemMutmacher who speaks about her illness and empowers others with the condition. The then 30-year-old spoke about her experience with the chronic disease. Her story inspired the launch of the #LipödemMutmacher initiative.
Using this hashtag, Instagram posts by courageous women get collected which tell of their daily challenges with lipedema. They create a whole information platform which is unique in its kind.
This is where courageous women share their daily lipedema challenges.