How do we view life when almost everything around us is taken away? I have had a very good time over the years walking around on this earth, but at this moment life is very heavy to bear. My chronic fatigue syndrome has become much worse and right now I almost do not have energy to do anything. I have been sick for many years, but before I have been able to work at least half time and live a reasonably normal life. During the last 18 months, it has been hell. I need to lie in bed many hours during the day and I have become very inactive. I hate that since I have always loved to train and have been so physically capable. Now I have been reduced to only being a shadow of my old self. I long for being able to use my body to a greater degree, but right now all I can do is a short walk in a whole day and nothing more. I am not only tired and without energy, but I have serious illness feelings throughout my days. I spend almost all my time inside my home, almost like being in prison. I cannot plan anything and it affects my whole life. I can not take care and be there for my woman and my five year old daughter, which gives me a painful feeling of inadequacy. I exist, but I don’t live and I am afraid that I will not be able to dig myself out of this hole. I can only wish that my body will heal itself with time. One problem is also that this disease is quite unknown and there is often little knowledge about it. During the time that I have been at home from work, I have been given very limited help. Many people and doctors think that it is a psychological problem when in reality my body is sick. Sure, both mental and physical efforts make me more tired, but I am not depressed or stressed. Being sick and not knowing if I ever will be better again can make any person lose hope.
Is there any light to be found?
To see the light in my current situation is not easy, but I have been blessed with a lot of things. I have a fantastic, strong woman at my side and a smart and beautiful daughter. My parents are supporting me through thick and thin and I have a group of close friends that have been in my life since I was a child.
Most people want to have the feeling that they achieve something each day, but when we are sick, we need to accept that right now we cannot do all the things that we wish for. We need to celebrate all the small wins and not be too harsh on ourselves. We are still playing a part in writing the history of humanity on this earth, it might be a small part, but we are still part of something greater. When we realize that, even if i don’t realize all my dreams, there is still someone else that helps playing that role in the bigger picture.
When we are so sick that we can not control almost anything, there is a need to be less egocentric. It is a perfect time to be more kind to people around us and grow to be another better person. We are all together in this life as humans and it is not just about me, it is about us.
Right now I cannot steer my life in the direction that I want. I have fought and fought trying to go against the river, but the more I tried, the more beaten up I became. I still try to fight from time to time, but I know that I need to follow where life takes me and not try to go against the tide over and over again. It is hard to embrace the fact that sickness can take away your ability to have the type of control over life in the way that we wish for. We think that we need to create and mold it into a specific form to be happy, but maybe there can be happiness in a life where the form is different than what we initially wanted. We are all different when it comes to how much control we feel that we need in our lives and I have a very high need for control. Being an Autistic person that wants my special routines each day, finding myself in this situation where I cannot do them no matter how badly I want it, I have to loosen up and take things as they come, honestly I really don’t like it, but I just have to do it.
Spring will soon arrive here in Sweden and today the sun is shining, I had a good breakfast with my girlfriend and my daughter, there is still hope.
Daniel Antonsson is a 43 year old Autistic man living in Sweden with his Venezuelan girlfriend and four year old daughter. He has always enjoyed writing about different subjects and being able to publish for the Art of Autism make him feel truly blessed.
