J's Journey

After a while it had begun to sink in and I realized how serious this was, after three months in bed, being unable to do simple mundane things and slowly becoming the size of a matchstick I was frustrated, fed up and ready to give up. Those were the three longest months of my entire life and I just wanted it to be over. I started to wonder if I was a plant because I felt like I wasn’t going anywhere, I couldn’t work and I couldn’t go out and enjoy the things I loved most.

I’ll forever remember those times as dark times for me, since I’m an adventurous outgoing person who loves having fun. So as you could imagine that was hell. When enough was enough I decided to fight, my family didn’t give up on me so I wasn’t going to wave my white flag just yet. This girl doesn’t go down without a fight, I searched endlessly online for anything that could alleviate my painful symptoms and any information on this disease I could get. After all its better to know your enemy right ?

Ten Doctors and rounds of heavy medication later, i found that at least one of their treatments was working, i had my life back for a little while but like everything in life it came at a cost. It was a steroid medication and a heavy one which meant it wasn’t a permanent solution and i would potentially relapse into my past symptoms. To ice the cake it suppresses the immune system making me vulnerable to anything and everything that passes me. So i felt like a walking time bomb, scared because i knew what would happen when i came off these medications and frustrated cause not only was it not permanent but the medication itself was making me sick. Bechets Syndrome has no cure and so far that steroid medication is the only thing that works but that hasn’t stopped me from fighting the good fight.

With everything in perspective now, i searched for a way out of the mental state i was in. As you can imagine after all that i was tired mentally as well; i needed a way to give my mind a break it had taken enough of a hit from this war already. I needed to be myself again and by turning on the console i found just what i needed.

 

 

 

It was in high school where I started playing video games, back then they were just entertainment and fun. As I had little friends and had to deal with school bullies, I sought solace in the gaming console. My brother had a PS2 and a few games, soon I used it as an escape to not have to deal with problems in school or life. I soon realized that using video games with the purpose of escaping realities problems wasn’t the answer and I wasn’t helping myself at all. I went from being relaxed and focused to skipping school just to play.

I hadn’t played for a long time and if I did it was strictly for stress relief purposes; In November 2016 I had gotten ill and until now I had no answers. Scared and seemingly alone, I prayed to get through whatever this was and I looked for ways to take better care of myself. August 2018 I was finally given answers, not what I wanted to hear but those answers would change my life forever. I was told I had Bechet’s syndrome, also an immune disorder where the immune system attacks some of its healthy cells. It also causes blood vessel inflammation throughout the body, signs of the disease include eye inflammation, skin lesions, mouth and genital sores. I had never heard of Bechet’s syndrome and through habit did some research on it to learn more about it and look for ways to take care of myself while dealing with it.

At the time I was in a relationship and while getting little financial support for tests and treatments; I got no emotional support and that was something I needed most on this journey especially from someone I loved. That and our relationship ending all while I battled this disease was enough to make anyone give up and at one point I was ready to surrender; after spending months in bed unable to do even the most basic of functions my family reminded me I was not alone and I shouldn’t give up. I continued to search for ways to cope mentally and emotionally as being on heavy medication restricted me from many things. It was November 2017 I discovered that my love for games and gaming could help me in ways I didn’t think possible back then.

 

I discovered games that frustrated me, games that relaxed me and games that did both as strange as that sounds. I found ways to cope when i felt alone, being in a bad relationship through it all didn’t help, my self esteem dropped like a ton of bricks and i developed anxiety but this journey is just getting started and giving up doesn’t exist in my vocabulary.