Dr. Martina Melzer, published: 08/01/2022
Especially about syndromes like ME/CFS, fibromyalgia, POTS, Long Covid or MCAS, doctors often know little or have faulty knowledge. So, from my point of view,
it is absolutely recommended that you acquire knowledge yourself, educate yourself. Even if you have found a doctor who knows a lot about your disease, it makes sense. Because time at the
doctor's office is scarce, as we all know. And most of them represent the classical western medical approach.
So go to the numerous good sites of patient organizations at home and abroad, look for blogs, for healing-oriented Facebook groups, find other sufferers on Instagram and Facebook (preferably those who are also on their healing journey and don't drag you down emotionally!). Read books on the subject - scientific books, healing stories, self-help books - take online courses or programs. You need to become your own expert (and in my case, that's an ongoing process)! Take notes: this appeals to me, this might fit me, this I could try, this is interesting, I want to know more about this, this might play a role for me.
After you have acquired knowledge, it helps to observe yourself for a while. What triggered your illness? What stresses you out? What stressful and distressing
events were there in your past and childhood? What worsens your symptoms? What is good for you? What is your diet like, your sleeping habits? How much rest do you allow yourself? What does your
body tell you? What do you have to do, what should you do, what do you want? How does your body feel when you are afraid, angry, sad or desperate? When do you have the most energy, when the
least? Do you feel good about breakfast? Do you feel the need to move?
Ask yourself questions about the topics that spoke to you most in your research. Again, take notes. This will give you some initial clues as to what you need to change in your situation, in your life, what is good for you, what is hurting you. Surely, when you did your research, there were already numerous suggestions about what you can do towards recovery. Maybe you've already tried something, too. How does that work for you? Does it feel good? Does it help or do you think it might help? Or can you not really get comfortable with it?
Self-observation and mindfulness are extremely helpful in my view to find your personal path that makes you healthy in the long run. I practice it every day anew. For example, yesterday I read something in a book where I immediately thought, that's exactly what happened to me. Suddenly another piece of the puzzle was presented to me, I immediately wrote about it in my diary and was totally grateful that I now understood this piece.
The last important step is to put your knowledge, all the tools you now know and all the little things you have learned about yourself into action. You must now
become active, test out new things, change things in your life. Even if it is very scary, if it creates inner resistance, if you say "I can't, I can't do it". You can! Baby step by baby step. One
baby step further each week. Just test it out. What's the worst that can happen? And what is the alternative? Staying sick, getting sicker, missing out on life? No, I don't think that's
For me, the last step was particularly difficult. I delved into the knowledge like being obsessed, dug deeper and deeper, understood more and more, put together more and more pieces of the puzzle. Took the hundredth course, read the eightieth book. It was then clear to me why I had gotten my syndromes. And I knew at least roughly how I could fight my way out of it. I tried out a lot, improved my condition bit by bit. But I didn't want to tackle the really difficult things. I knew I had to tackle them if I wanted to get well. But they seemed like Mount Everest. And I was still stuck in base camp, even though I had already accomplished so much. That then frustrated me, annoyed me, disappointed me. There was a lot of inner resistance. I'd rather read another book, do another course. And then I dare to do it. Or don't I?
Do you know that? Yes, in the end you just have to start. Fight your way step by step from the base camp of Mount Everest to the next camp. Rest. Possibly descend a bit again. Then back up again. Piece by piece. Until you eventually see the summit and think: I'll manage that somehow. No matter how long it takes. Therefore: Don't give up! Dare to take the particularly difficult steps. They may be exactly the ones that bring the breakthrough.
Translated with the help of DeepL
PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition,
I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.
Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their ME/CFS or other syndromes.