The long and winding road
I wanted to share my story. My story isn’t over but it started over 15 years ago.
At the age of 11 every February I got a mystery rash. No doctor could ever work out what it was. It would appear on my body and my spread to my face. Every year this rash would come back. Nothing helped it or got rid of it.
I lived an active life and when I left school I worked hard and played hard for a few years. Until February 2009. My rash came back and I got the flu and a tummy bug. I just couldn’t shake it off. Months later I was still run down and exhausted. My family thought I was just doing “too much.” My work thought I was going out too much with friends and not taking my job seriously.I lost my job and my exhaustion got worse. I was run down. Covered in mouth ulcers and i could barely get out of bed.
Life had to slow down and I had never felt more alone. The doctors suspected M.E. I asked and asked for help but got nothing. So I changed my diet and did everything I could to help myself.
Still my family didn’t believe I was ill. I started to think maybe I was making all this up in my head. I asked for help and actually got laughed by doctors. After this incident I moved. With my mom finally coming around she got me some help. Scans. Blood tests. Nerve conduction studies. All sorts of tests. Still nothing conclusive.
In 2011 I got diagnosed with fibromyalgia and started to get some help. It was such a relief to get some kind of answer but I still felt something was missing.
I looked after myself. I worked part-time and was as independent as possible. Always ill and run down I felt fed up. After being hospitalized 3 times in 7 months my doctor suggested Lupus. It was something I had only heard of.
My dad has a similar condition that is rare and affects the body in a similar way and Raynaud’s phenomenon runs in the family. Looking at this and all of my other symptoms it all fell into place. It clicked.
I’m still waiting to get an official diagnosis 18months on. My condition is getting worse and worse but I’m happy knowing I’m on the right track to getting the help I need. I have a great supportive community or lupus warriors. I have my own business with my boyfriend which gives me flexibility when I am ill and a great team of doctors behind me.
My story still has a long way to go but it’s going to be a good story!