As promised the story about how and what after I finally had the diagnosis. Think I will post this topic in several blogs because a lot has happened since the diagnosis.
I was diagnosed at the UMCG in Groningen, after many physical examinations the diagnosis of Ehlers Danlos Hypermobility Syndrome was diagnosed there. I had no idea what it meant but I was happy, because finally after 15 years of all kinds of doctors, therapists and research I finally had an answer. after 15 years of hiding for the outside world what I actually felt, after hiding the pain, going through with pain, swallowing everything that will relieve any pain. I could finally get advice / help that I needed, and I could finally admit I had something.
But that is easier said than done, before this happens you go through all the emotions. Sadness: I do not want this for the rest of my life. Incomprehension: This is not understandable for others, so it is difficult to understand Anger: I had to give up all dreams that I had and look realistic. Fear: How will the rest of my life look like? Mourning: It sounds weird but also mourned for everything I had to let go. But the most beautiful emotion was hope, hope that I was stronger than this, hope that there would someday be something that would help, hope for understanding, hope for support and hope for help. Hope brought many questions, many times when I had to step back and see what I want, what do I do and what do I do? A year after the diagnosis I had a very difficult mental experience that my body was going to show more flaws, I had a hard time accepting that mentally. I had shared myself in two, mind and body. My mind wanted everything my body could not do, this was such an intense struggle inside that I realized I need help. I found it weak that I could not do this alone, but I found a great psychologist in Assen who helped me so well. She made sure that I could go to the Haren Rehabilitation Center and follow several therapies. For 3 months 2 days a week I was in Haren, here I had Physiotherapy, Occupational Therapy, Psychologist and Heart coherence training (short summary: Learning to regulate your breathing and heartbeat). These 3 months gave me so much rest there were so many times when I thought okay so it is possible. I still lived after the diagnosis as before, just do the same as the rest of the society and make sure you count as the rest does. But there I learned everyone is different, you are different I am different. I do not have to do what everyone else does, I do not have to perform like the rest, I participate in society in my own way. and that gave peace, I accepted my condition and I accepted myself with this condition. I was me.
Spirit and Body were one, no more fighting among themselves but a collaboration. I know as you read it here it is short of no emotion just a simple explanation, but in reality I have these months often sat with people crying on the couch, crying on the phone, it was difficult, it was heavy. In reality I completely broke myself off until there was nothing left, with the result that I could build myself up again. But now that all your defense mechanisms are gone, you are nothing but very helpless. And I have had trouble accepting and accepting help all my life and now I was someone who really needed it, but that too has taught me so much about the people in my life, and how people see me. Nobody knew I needed them, nobody saw it because I did not allow it. I still only state that I really need you now if it is too far, but I can ask the question now. Since a year I walk back to a homeopathic healer, and what have I felt so much better in the past year than before. Physically everything went away, but the therapy, food advice and homeopathic medicine makes me feel mentally better and my body feels better too. It is double because as yet I have pain, and my body goes its own way. Yet, certain pains can now be suppressed and softened, making me feel better. It feels so good that even though I'm moving I still come back for her once a month. I have also realized very well that I do everything for everyone around me, I need help, I do everything for you. And I never understood why, but now all those years after the diagnosis I know, that is my way of feeling that I am adding something. I do not work, I can not work anymore, I do not contribute anything. My way of contributing something is to take care of everyone and be there for everyone. As a result, I always forget myself, and that awareness only comes when I have gone too far and have to pick myself up again. But that is not bad, because I have learned in recent years that nothing is fixed, everything can change, you can say yes today and tomorrow no. everything is possible and everything is allowed. The only thing I have that can not be changed, maybe but I have not succeeded all those years. Is that since I know this I have become so insecure, I used to walk without make-up, jogging pants on the street whenever I feel like it. Now I do not leave my house without make-up, neatly dressed. Why??? Feel more confident as long as I look good no one sees anything. Getting to know new people is a social conversation and what do you do for work? uhm yes do not work! and then tell them that you are sick, of course not, but what do you have to do then.
But fear is also part of chronic illness, all fears have a reason but problem everything I understand my fears. For someone else it does not make sense, so it is difficult to discuss it. While having a fear and admitting nothing wrong with it, I still do not do it. There is so much more to it than just having a condition that destroys your body, it also demolishes you spiritually. The constant pain, not being able to sleep, being constantly tired, insecurity about what your body is going to do that day, can not plan anything because you never know, losing people around you because they do not know what to do, your constant wonder what is the next thing that will happen. I hope that this move will do me good, that I find what I am looking for, that I will get further than where I have been standing still for years now.
This was a whole story, but I have never been honest with anyone other than myself. Even while I type this, I do not want to type certain things because that is confronting, but as I have intended myself I am going to do things that I find anxious. So here is for the first time in my life an honest look in my life !!! -XXX-
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