Sirin Gnadeberg shares how she cured her ME/CFS & POTS:
ME/CFS/(POTS) Cured after 5 years of illness
Sirin Gnadeberg shares how she cured ME/CFS & POTS after 5 years of debilitating illness in her own words below. We hope to bring you an interview about her recovery journey soon.
Sirin Gnadeberg tells how she cured her ME/CFS/POTS in her own words:
I had chronic fatigue syndrome for about five years, the last two of them I was almost housebound. I found a way out and I am healthy again for two years now. During my time of illness, I learned a lot and am incredibly grateful for this experience.
In January 2012 I got an infection with a massive sore throat and had to spend some days sick in bed. But as soon as I felt better, I got up without taking the time to fully recover. During that time I was in New Zealand for a study abroad semester and used to be very active. Doing lots of training (acrobatics, parkour and so on) was a big part of my life. But since the infection, I had problems to concentrate on my studies and was constantly tired and exhausted.
The first general practitioner I went to after a few months still in New Zealand already suspected CFS and found antibodies of the Epstein Barr virus in my blood. The following months I managed to pace myself well enough to start studying again and being able to do moderate training. All activities that were not based on endurance, such as acrobalance and climbing, worked relatively well. However, I had to take much more breaks, did much less overall and had to move slower than before. It was no longer possible to really power myself out and feel good afterwards.
After two and a half years I lost my patience and decided to do everything I wanted to do again. I went to every training session and finally wanted to finish my studies quickly. I ignored the exhaustion and went over and over the line, until it was no longer possible. In the end I was totally exhausted and for the next two years almost housebound. The POTS symptoms (postural orthostatic tachycardia syndrome: excessive pulse increase while standing, dizziness ...) worsened and walking more than a few meters was no longer possible without breaks with sitting or lying down. I was awake only a few hours a day and in those super brain fogged. I could not concentrate at all. Physically I tried to stay within my limits, but they were so tight that I failed over and over again. I missed my old life insanely, just wanted to go back there and thought at that time that everything had been great before the sickness.
In April 2015 we got a tandem and that was awesome! Rolling slowly around on my bike worked always better than walking. Sitting on the back of the tandem, putting my feet up on the frame and closing my eyes when needed to save energy worked pretty well for me. My partner and I were able to go out together again to experience outdoor adventures. I got to learn not to care what people would think of me such as “being the lazy girlfriend letting her strong man do all the hard work”. That was also the case when we went grocery shopping with me sitting in the trolley grabbing stuff from the shelfs now and then and my partner pushing it around.
I started using an old wheelchair so I could take part in walks and other activities. That gave me a lot more freedom, but at the same time it made me feel like I was really seriously ill. Although I could only walk a few meters at a time, I was still able to do handstands and acrobatic figures on good days. I didn't need endurance for that and for some reason the strength in my muscles had stayed incredibly well. Being pushed around in a wheelchair and then getting up to do a handstand or acro photo is kind of weird. But I did it anyway despite of what people would think of me.
Lesson learned: Stop worrying about what people think about you and just do what feels right and works for you!
When I could neither intellectually nor physically accomplish anything and felt like I was only a burden to others, I often asked myself: Who am I? What is left of me? My answer was: NOTHING. I cannot do anything or contribute to society, so I am nothing. And maybe that was the turning point. I had to find out WHO or what I really am. Appreciating me for being and not for doing was and is a journey that still goes on.
Lesson learned: Love yourself for who you ARE, not for what you can DO!
During this time I came across a website about ten distorted thinking patterns when chronically ill (and also for healthy people). Perceiving and changing these thought patterns has helped me to improve my mood and my outlook on things a lot. Once I was able to be with friends in the park. Later on everyone decided to go to a friend’s house to have some dinner together. I was far too tired to keep going without some sleep but was invited to sleep in my friend’s bed while the others were cooking. When I heard everyone talking and laughing in the kitchen, the dark thoughts began, selfpity
and a little envy rose in me: The others had fun and I couldn't be there. But I noticed and stopped those thoughts and focused instead on the awesome time in the park and what wonderful and supportive friends I had. I was thankful for being able to rest and joining in for dinner later again.
And then I could relax!
Lesson learned: Focus on what you can do and not what you can't!
In October 2015 I saw a video of Lissa Rankin. She says that the human body has incredible healing powers that only work when the body is in relaxation mode. Inspired by this I decided: Yes, I activate my healing powers and get well again! I prescribed myself a recipe of more contact with friends, more meditations, finding things I could enjoy without overdoing and so on. At that time I was not quite ready to actually heal (and I didn't get any help from outside), but it was a beginning and I did improve.
Lesson learned: Relaxing and reducing stress is elemental for healing!
Through the illness there were lots of times when I was unhappy, desperate and very frustrated with myself. During this time my partner stayed away more and more often. When he finally came home, I was already so angry that I pretended to be asleep or turned away, although I was so desperately longing for his company. At some point I realized that I had to do something. Forcing him to stay made none of us happy. So I began to work on myself and to make myself happy instead of expecting others to do so. The more I managed to be at peace with myself and in a better overall mood, the more often he was back home and spent time with me.
Lesson learned: You are responsible for your mood and feelings, not the others!
In spring of 2016 I spend a lot of time in the garden. Because I was sitting and lying around without moving a lot, I suddenly noticed many more birds and squirrels than before and began to take photos of them. That was fun and felt good.
After some research I started to add salt to my drinking water in April 2016. This significantly improved the POTS symptoms, which then increased my walking distance and also normalized my excessive water needs. During this time I wanted to find something treatable besides the "incurable" CFS. Based on suggestions from a CFS Facebook group, I decided to visit a Lyme disease specialist.
The doctor examined me very thoroughly, asked me many questions and promised me: "We'll get you well again". All Lyme tests were negative, but he found increased antibodies for some other bacteria (Bartonella, Chlamydia, Mycoplasma) and I took antibiotics for 16 weeks. The following months I got slowly better. It was difficult not to lose patience with the sure knowledge: I am on the way to recovery. At the same time I had received the official diagnosis "post-infectious chronic fatigue syndrome" at the Charité in Berlin.
In March 2017 I wanted to speed things up and decided to go into nature to find my healing powers again. I stayed one week in the clubhouse of our sailing club next to the lake. Because there was no cooking facilities there, I came up with the idea of fasting. What I read about it inspired me and it felt right for me. On the first day of fasting I felt better than usual, then it went downhill until day 4. I had to spend most of this day in bed. With my current knowledge I could have supported my body better with the detoxing.
From then on it went up. I could extend my walks further and further and reduce the breaks. I hugged trees, meditated in nature and looked out at the lake. I imagined myself being a tree: the time of illness was my winter and now, like all the trees around me, I was ready for spring time, full of new energy to start living again. On the 9th day I started to eat again, on the 10th day I cleaned the whole kitchen and for the first time I went up the hill for acrobatic training on my bike. The following weeks I could do much more than before. I was able to celebrate new best performances almost every day, but
mostly only one activity per day.
In May I did a liver detox, which brought me further significant improvements. I ate more and more wild herbs and raw vegetables and started an online course, in which energetically negative stored emotions are released from the body. At that time I was pretty much healthy again.
In the summer of 2017 I was able to resume my studies and in August I became part of a circus company. I had training twice a week and managed to finish my studies. After I had submitted my diploma thesis after an intensive final spurt in June 2018, I started a two-month long bike tour, biking 2,000 km through Sweden and Finland - a dream that I could finally realize. It was amazing! When I went steep hills up without too much trouble, I sometimes thought back with astonishment to the times when I had failed at the slightest incline.
It just feels wonderful to be able to walk as far as I want, to run and jump with joy, just because I can. It's great to be able to appreciate these simple things in life so much because I know what a wonderful gift they are now.
Looking back, I find it difficult to say what has really helped me and what has not. However, I believe that the following things have been significant on my way to recovery:
- Self-love and appreciation for my being and not only for my achievements,
- pacing with the help of a heart rate monitor,
- live more mindfulness and find out what does me good and do it more and more often,
- eat many wild herbs and "green stuff" (green smoothies and salads)
- Hope: a doctor who promised me that I would get better before he prescribed me antibiotics against
- a chronic bacterial infection,
- Detoxify: Therapeutic fasting and liver cleansing (but only when I was feeling much better again).
My most important learning task was clearly self-love. Today I know that if I hadn't started to love myself, I wouldn't have recovered. Now and then I fall back into old patterns and define myself and my value through my achievements. So I am still working on self-love and on "cleaning up" my thoughts, habits and patterns. I thought that when I am healthy again, everything would automatically be simple and great, but I still have periods of low energy from time to time, which mostly result from indecisiveness and aimlessness and which are probably normal.
No matter how much I hated this sickness in between, in the end it was the greatest and hardest gift of my life so far. It send me on a journey to find and show myself, figuring out what I actually want in life, loving and accepting myself for who I am and diving deeper and deeper in a whole new world of spirituality, possibilities and wonders.
I am also finding out what I really want to do with my life. My new goal is to interview as many therapists and coaches as possible about their approaches to healing CFS and the backgrounds and mechanisms of those. I also want to ask healed people about their experiences and back everything up with the scientific knowledge of top experts in the field of general self-healing powers. I am going to make this concentrated knowledge available in an online summit "Wege der Heilung" (paths torecovery) in English and German for all those who want to find their way out of CFS.
"Like a tree from hibernation, I will awaken. Even though from outside the trees all still look like dead, inside they are ready to start and full of life. Soon the first leaves and flowers will sprout and everything will be green and blooming and full of life. My hibernation is over now as well. I am ready. With my feet firmly rooted, my spring can start." I wish you all a soon spring too!"
Thanks for reading! I hope my story can give you hope and some ideas for your own way into a new life!
With lots of love, Sirin