My life with Spasmophilia

Credits: Unsplash.com

In a world where everything always has to be perfect and where we need to perform well, it’s almost taboo to be sick for a longer period. And when we talk about chronic illness, people often don’t know what it’s like to live with a type of disease that complete changes your life. Therefor we asked Julie, a 23y/o girl to share her story about living with Spasmophilia.

Meet Julie

My name is Julie Rosseel, a 23-year-old girl who’s a little bit sassy and classy with a touch of badass. I’ve been raised by a single mother and I come from humble beginnings.  I’m cursed with a disease named spasmophilia, therefore I have to live life day by day and I have to appreciate the ones without pain.

Before I had spasmophilia I wanted to be a kindergarten teacher as I was raised with the two children of my big sister. I always loved to be creative with them or to teach them something new. Somehow I always had something in me that attracted children. Do you recognise this type of feeling?

But after I got sick, I realized that it was impossible to do such an intensive job. So I began looking for something else. I had so many interests that I couldn’t just pick one. I love fashion, beauty, food, and lifestyle. And above all helping people. When my mother said to me I should write a book about everything I’ve been through, it just clicked. I’ll become a writer! With all my interests, I have enough choice to write about.

While writing I want to help people by talking about sensitive subjects and breaking boundaries. To let them know they’re not alone. That’s why I’m thankful to be part of the amazing Blogzine team. It’s a team where you can be yourself. 

By sharing my stories I want people to know that they’re not alone


Spasmophilia

Spasmo-what? Yeah, I know right? When the doctor finally said what caused all my pain, neither I nor my family and friends knew what this disease meant. After all these years, I finally had the name of the one thing that had turned my life upside down and I didn’t even knew what it was. What does it mean, and is there a cure? In this article, I’ll tell you all about Spasmophilia and how it affected my life.

Spasmophilia is a disease where the muscles and nerves are abnormally sensitive. Just a simple pat on the back or an embrace can cause a lot of pain for someone suffering from spasmophilia. And to make matters worse, it goes hand in hand with a range of complaints like severe muscle cramps, spasms, extreme tiredness, pain in the chest, etc.

How it began

It started off  innocently: first I thought the muscle pain came from making the wrong movements, or I had the flu or something like that.  But after a while, the symptoms became worse. I repeatedly had a fever, I slept a lot but remained exhausted and my muscles always felt like I had done a heavy work out. In the beginning I ignored the pain and kept on going. After a while going on and forcing myself wasn’t going to get me any further. So I decided to find answers.

Actually my eyes opened when I lost the strength in my hands. I had trouble holding things which caused me dropping everything and my body forced me to take a break. All tasks in my daily life became impossible. Getting out of bed was already a big task for me.

Credits: Unsplash.com

And you need to know that I visited my doctor a lot but she unfortunately never really found the real reason. It was not like it was in my head since my body clearly showed that it was not okay. Even in my blood they only found that my vitamins were out of balance. That was causing all the tiredness or so they thought. Can you believe that? So like a good girl I swallowed all my vitamin pills and took extra syringes to boost the vitamins, but the pain remained the same.

Not a depression

Another thought of the doctor was that I had a depression. But deep down I knew that something else was wrong and that I really needed to find the correct answer. Yes I’ve had a depression years ago, so I knew what it meant. But this was so different and the only thing I wanted was to continue my life and do what my former classmates love to do like partying and studying,… But my body prevented me.

“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” –Carmen Ambrosio

Since I wasn’t able to go to school every day I had to decide to stop my studies. However it didn’t hold me back to continue differently. I started over and over again taking classes in adult education programs. Simply because I didn’t want to accept that I was sick. However I had to give up because my body couldn’t handle it.

This period was very hard, not only because of the pain but also because of the decision to quit school but also because I lost a lot of friends at that time. That time when I actually needed them the most. This caused a very lonely feeling and I wanted nothing more than to do what they did, but for me, it wasn’t possible.  It’s mostly feel unheard during that period but to this day I am still grateful for the few who have remained and have always supported me.

Only after a few years my doctor finally referred me to a physical medicine doctor. It immediately became clear that I didn’t imagine my illness. Having someone who was finally listening to my stories and who understood my worries felt like music to my ears. The doctor did a few tests and I finally received an answer: “You have spasmophilia”. I was thrilled to finally know the name of the one thing that had taken away so many years of my life. I could finally find out what to do to make me feel healthy again. 

How to cure from Spasmophilia?

Unfortunately, there’s no magic pill to cure spasmophilia. I was advised to start rehabilitation therapy to reboot all my muscles with physical and mental exercises and in a few months I will start this treatment. Hopefully this will help me to close a chapter that decided a big part of my life.

“ Not being able to do as much as others does not make you a failure.”

So to all the people who also suffer from an illness I just want to say a few things that I learned the past few years. Always believe in yourself, no matter what someone else says. You know what you feel and you know your body the best. It’s possible that you can do things today that you couldn’t do tomorrow. Remember that people will always judge you no matter what, so live your life the way you feel like living it and create your own memories.

The society we live in often has a hard time looking beyond what they know. That is why they prefer to judge people rather than think about breaking standard patterns. Don’t let it stop you!

I have learned that there are so many more options in life than those that are considered ‘normal’. By thinking outside the box I now almost have a degree through home education. Don’t think about the people you lost but about the people who stayed. I’m very happy I have my family, my boyfriend and a few friends to stand by me when I need them.

I once heard a quote that has stayed with me since that day. “I have a disease, but the disease does not have me.” That is why it is important to keep fighting, not for someone else, but for yourself.

This article has been made in collaboration with Julie Rosseel

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