Up until I was 12, my life was almost perfect; I was good at sport, school and making friends.  I began to get the sensation of burning when I was playing sport.  Later the burning in my feet would never end. I began to start droppping out of all my many sports until I was left with just netball. When I turned 13, the burning moved to my hands and became constant. Last year when I turned 15, I began to experience episodes where my face would feel like it was burning. But it was not just burning. It felt like what I would imagine acid burning all the skin, muscles, bones and even I felt like the blood was burning. Throughout the year of 2015, I began to experience problems in my calfs and forearms.  The pain I experience is as if my muscles are being torn to shreds.   This is now progressing into my face and thighs.  Sadly, after refusing to give up netball for years because it was all I had left, I could hardly move so I had to step down. Some days I am lucky to be able to wobble around the house in agony but all I say to myself is "one step at a time".  The doctors have not been able to find any medication that will give me some pain relief , so I try to just smile through the pain. 

For me, if writing this blog helps explain to people the struggles I go through on a daily basis, I will be  more than happy.  When I was needing something or someone to relate to, there was nothing I could find from a teenager's perspective of someone that  was going through an illness that could remotely relate so here is where I come in, I want to help and encourage others on their journey. 

I would love to hear from you and I am more than happy to answer any questions you may have xx