02 Dec Voices of Fibro-Charley Ackroyd
My name is Charley, I am 23yrs old. I have fibromyalgia, damaged muscles and nerves in my neck, leading half way down my spine and my arms and hands, asthma, and I also suffer with anxiety and depression, I am still in the middle of tests for other conditions, as I know that I am dealing with a lot more than just fibromyalgia and its symptoms. This illness has changed me, most of the time I don’t feel like my own age and according to some people, I don’t look my age either. But it’s surprising what a fake smile and some make-up can do, it can make you look like a normal, happy, and healthy person.
That is not how we feel at all, we feel weak, and tired, and no energy, and in a lot of pain. There is no cure and very little treatment that hardly ever works, and unable to get on with everyday life like others. You feel lost and isolated and you just feel like your existing, but not living in this world.
Without knowing for so many years until a few years ago, that I had been suffering with fibromyalgia since I was 6yrs old. I spent most of my childhood/teenage years trying to find out why I was always in so much pain and had all these different symptoms. All doctors ever told me as I were growing up through the years, was that it was growing pains, or it was all in my head, or I am faking it, for many years it made me feel lonely and isolated. I was always off school because of being ill and in pain but no one really believed me; teachers, family and friends just thought I was faking it to stay off school and cancel plans. On the days I did go to school, all I looked forward to was going home and going to bed, but as usual people just thought I was lazy.
For a few years during my teenage years, after it started to get to me even more and having so many people judging me and bullying me. So, I decided to stop bringing my pain up and tried to get on with life with a fake smile, so I could make everyone else happy. I got fed up with people telling me to shut up and to stop complaining and to stop looking for attention, so I stopped talking about any of it and because of that. I also stopped talking about my feelings and because of that, I now find it hard to speak up and talk about my feelings and about how I am feeling. A wall got put up and even now I find it hard to bring it back down.
Finally, school was over, and I went to college, well I went 3 times to 3 different ones, because the first 2 I had to quit because of how much worse my illness got. But I managed to complete my third one. More time and years past, and I kept going to doctors to figure out what is wrong with me because I knew deep down that it was more than growing pains, plus that never explained all my symptoms and painful migraines. The doctors still had no clue, but they put me on crap and low painkillers, so I decided I had enough of this, so I spent a lot of time researching to find out what was wrong with me.
I then stumbled upon Fibromyalgia, something I had never heard about before, but I knew straight away that I had it because it explained everything. So, I went back to my doctor and told her about Fibromyalgia, she then says it may be possible. She sent me for tests and scans with specialists and all that, and finally after everything kept coming back ok, she finally diagnosed me with fibromyalgia. Ever since then I always try to diagnose myself first before seeing a doctor, which every time I am right.
A part of me was so glad to finally be diagnosed and to finally have an answer, but when that minute was over, I went in my room and broke down, it had felt like my world came crumbling down. I knew that my life and future would change even more. I knew I couldn’t go back to college again for something I had been dreaming of doing to do what I really wanted to do in my future. I knew I couldn’t even work, it even changed my thoughts of having kids one day because I learned it can be genetic and I found out I had gotten it from my biological father. Which would mean there would be a possibility of my own child having it one day when I was ready to have one, and I didn’t want to take the chance because it would be my fault if it did get passed down, and I would hate to see my own child suffer the way I have. Then I realized maybe there is that chance it would skip as it has with my half siblings, so maybe there is hope there.
After being diagnosed, I kind of became obsessed with trying to find out everything about fibromyalgia, and what I had found in my research scared me even more because when having fibromyalgia, you are at more risk of getting other conditions. I still needed to understand it all more so I kept doing my research and then I found myself doing research about other illnesses, I couldn’t believe how many there were and that there are so many people out there suffering, all I wanted to do was help them but I didn’t know how. So, I made a Facebook page for other fighters out there and I try to offer them support and I post information about different illnesses and offer to do research on anything they need help with to find answers. Later, I decided to make a support group on Facebook so other fighters have a place to feel safe and have support and to not be judged and be around others that understand.
It is nice to speak to those who fully understand what I am going through, but it’s not like I don’t have support in my life because I do. I have my mum now who helps me and supports me, she may not fully understand everything I am going through but she at least tries and I appreciate her support and help. Especially on my worse days when I must cancel plans and not able to help with things or not able to do my own stuff like shopping and that.
Every day I still try to put a front on and a fake smile most of the time because I had been doing it nearly my whole life and it’s just who I am. I also learned that I am not my illness, I won’t let it run my life completely, I am still me and that will never change, all I want to do now is help and support others. I hated feeling like I was alone for so long and I hate thinking that someone else out there is going through this and feeling like they are alone in this hard and long fight. I want to find those people and help them and support them and help them know that they are not alone and that we can fight this together because at the end of the day, we are Warriors!