Living a great life with a chronic central nervous system disease

On a sunny summer day I went to school in the morning. I must have been just 7 years old, as I was still in primary school. I hardly remember what topics we were going through that day but I remember I had fun. I loved school. I made friends pretty easily and it was always fun to learn new things. I could never get enough. 
But that day something was different. 
My head suddenly started to give me tremendous pain, as if it was about to explode. I wasn’t able to see properly any more and I felt heavily nauseous. I remember that I told my teacher I don’t feel well but I guess that was not enough to get the attention I needed. 
Later that day I fainted and would lie in the back of the room until my mum picked me up.

At this time my parents and me didn’t know what was wrong with me. It all started when I was 4 years old. I would suddenly get these horrible kind of headaches, would throw up and sometimes even lose consciousness. These attacks would often last for days. My parents didn’t know how to help me and I visited all doctors that I could imagine. I spent so many days going to see all of them and being told they didn’t know what it was. Often they asked my mum if she was sure I am not only pretending to have pain to get attention. I wasn’t. I was truly sick and it would knock me out every now and then. For a young kid, this was scary as hell. I didn’t know what to do against the pain, everything made it worse. I would not want to cry and usually didn’t because it was just more painful. Most of the times I tried to roll myself together in a ball form and hide in a dark and quite place to feel better.

Fast forward: I was 9 years old and again I had another doctors appointment. But this time he told my mum he knows what gave me all this pain. ‘Your kid has heavy migraines. Different versions. We don’t know why but that’s what it is. Unfortunately there is no way to cure it. But we can help to make it better’. Migraines. Heavy migraines. So here I was, having a chronic disease since the age of 4.

Looking back to the beginnings of my Migraines, I remember the hardest part was not the physical pain, even though it was easily knocking me out. No, it was the mental pain that others caused. The pain of people not believing me when I said how much I was in pain. The people who told me, I was pretending to be in pain to get attention. People who told me I would have mental issues and it’s my fault that I have those migraines. I never understood how people possibly can think this way of a little girl. Later in my life I was bullied at work for the same reason. A woman who was my supervisor bullied me for over 2 years and who knows what her problem was — but she used my Migraines to try make feel bad and stop me from being promoted in the company. She spread nasty rumors and would blame me to be mental sick in front of other people. She was all about destroying my good work relationships and the reputation I have built, for whatever reason.

There was a time I had 5 to 6 times migraines a week. Yes, per week! Every single week for more than a year. And the hardest part has been people around me, like this supervisor, who would blame me for my disease, tell me I was pretending to have a disease to get benefits out of it and finally also people who excluded me from social life / work environment etc.

It was that day that I finally went through a 3-months migraine when I realized, nothing else matters but me. Please don’t get me wrong. But I had dramatic pain for 3 months, no matter what medication I took, it didn’t help at all. I was still working day in day out and all I got was this bullsh*t from my supervisor. So when I was free from the pain for the first time after 90 endless days I realized that it’s me who can make me feel better. I don’t have to listen to a person that is neither close nor important to me. I do not have to suffer more, than I already do with the physical pain. I just have to rely on myself and be strong. I learned how to better deal with the strong pain. The sudden attacks. The wrong things people thought and told about me.

But how do you get through a hard time like this? How can you make sure to go your way and to not lose yourself?
For me there are 3 key factors: happiness, trust in yourself and staying true to yourself.

Happiness is a choice. You can choose to be happy or to not be happy. You can choose to see your migraines as a punishment. Or you can accept it and see it as a part of you. Believe me when I tell you, it’s just there for your to learn. It’s a continuing lesson. It’s important for you to understand that it’s not your fault to have this disease. Remember, you didn’t order it in an online shop. This is a defect in your central nervous system that happened to appear in your body. But guess what? You are strong enough to deal with it. So stop blaming yourself and be happy. Be happy, because there is a way to live a fabulous life, even with heaviest migraines.

Migraines can be dangerous, due to the simple fact that fainting eg. while driving a car obviously isn’t good for you. There are many examples, but I don’t want to scare you, I want to show you a solution.

Be sure to trust yourself. You know your limits. You know how far you can go and what you can achieve. Yes, you have migraines but that won’t hold you back from anything you want to achieve in your life. And don’t you dare listening to others who tell you, you can’t do/achieve/become (fill in) because you are sick. That’s not their business and by the way they have no idea what you are capable of doing!

So I knew when I had migraines sooner or later my body would shut down in order to get rid of the inflammation of the nerves and blood vessels in my brain (that the migraine causes). That means whenever I had migraine I shouldn’t move too much and rest. I often got the migraine at work, or woke up with it, so I wasn’t able to rest as much as I needed. I would take my medicine and make sure to wear dark sunglasses to protect my eyes from the strong artificial light. I also made sure to only work things I was able to do easily without having to think too much. For example replying to emails, filling in excel forms, having project meetings etc. I was good in what I was doing, so I was able to do some work on “auto-pilot” which helped me a lot to not have a massive attack but having the medication work. Only when I felt there was a strong attack coming, I would stay home or would leave work early to be save.

You will need help from doctors to make your life easier.
Trust yourself when you speak to the doctors. Listen to your inner voice. Do you think this new pills really will work for you? If not, don’t take them. Look for something alternative with the same effects. Try alternative therapies like Traditional Chinese Medicine. Try the therapy you like to try but don’t do things or take stuff just because someone tells you, you should. Even though it’s your doctor. Stay true to yourself and let them know how you feel about this and why you don’t want to take the new pills for example. 
I tried so many therapies. Modern and alternative ones. Took so many pills in my life that I could fill a pharmacy with them. But when I thought a new therapy or new pills weren’t good for me, I told my doctor, that I am not going to take them.

Once I was supposed to take new pills to lower the over all amount of attacks I have per months. I asked for the side effects and they were horrible. I guess with taking those pills I would have killed my body step by step just for having one migraine attack less per month. I denied. 
In the end you are the one living in your body. You can listen to your inner voice. You know how your mind works. No one else does. Find a great doctor that can help you when you tell him/her everything you feel, the pain, when and how it appears etc. There will be therapies that help to lower the amount and intensity of attacks. There might also be pills that support this. But be sure to know yourself best and only do what feels good for you.

You see I am making a point here. First of all its all about you! Your happiness. Your body. Listen to your inner voice and follow it and you will see how much easier it becomes to live with the migraines.

You think your job makes everything worse? Go leave it! You find a way better one. This one friend doesn’t support you? Let him go. It’s not a friend any ways. You only need people in your life who are 100% on your side. You think you want to follow your dream and become a professional swimmer/Tetris player/drummer/skateboarder?! Go ahead! It’s your life. You know you can do it. Your body will let you, as long you know yourself and listening to what your inner voice tells you.

Migraines is an unpredictable chronic disease which can be very hard to deal with. But once you accepted it and you start to listen to yourself, you will see you can have a great life just as anyone else.

Be happy, trust yourself and stay true to yourself and you will live the life of your dreams!

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