Friday, 1 March 2013

The Truth (1)

Been thinking of writing these posts for a while but I have put it off because I was used to keeping it my secrets. Never wanted anyone to treat me different and I wanted everyone to know the real me keeping up with whatever life throw at me. I hated people pitying me so I thought it was easier to keep everything inside not letting people know what was wrong with me apart from K.I.D Syndrome I had no problem telling people that. I don't normally swear but swore a lot in this post because it's the best way to show how I felt writing this post and how I felt with whatever happened in my life.
It has been up and down typing these posts and it was so long so I thought to split it into few posts.

Keratitis Ichthyosis Deafness (KID) syndrome, it is a rare, genetic, multi-system disorder. There is no known cause or cure. I have had this since birth. It mainly affects my eyes (Keratitis), skin (Ichthyosis) and hearing (Deafness). No one else in the family is deaf or have K.I.D syndrome, that make me rare!
My skin is quite good compared to when I was younger, due to trying out various lotions and bath oils. But compared to the rest of my body, my face is bad. It’s very itchy when it’s hot or freezing.It helps to have cold lotion; I put it in the fridge away from food.

It don't really bother me knowing that I have a higher risk, than everyone else, of getting skin cancer because I know I can deal with it and move on. It's not scary to me because I have dealt with whatever life threw at me and I'm still here happy.

Had a cochlear implant for my left ear but it didn’t work out as the wound split open, my skin rejected the implant, so had more surgeries to keep it closed. In the end, the best decision was to have it taken out. Now and then I often wonder who will I be and where will I be if I still had the implant but really, I am pleased because I love who I am at the moment. Sure it would be amazing to talk properly and hear everything but that’s life.

Because of my K.I.D Syndrome, now and then I do have problems with my eyes and that is scary because one day I could lose my sight. I never want that to happen because I know life would be a lot harder. I go for my eye tests to make sure everything is okay but I have to take eye drops daily. One day my sight could be blurry. One day they could be really sore and I develop migraines. One day I could have fantastic sight. Everyday is different really. I just hope for the best that I don’t lose my sight because it is very important to me. It is very scary but I am carrying on with my life.

There has been so many times where I felt so hurt, lost and confused. I don’t trust easily, because so many people have left me out and let me down I now have trust issues but always trying to trust more people.

I’m opening up a bit because I want to help other people by sharing my experiences but it’s not always easy because I remember what it is like being rejected and let down.

There have been people trying to control me, change me and use me. That was also hard because I thought everyone had a right to be unique. Life would be boring if everyone were the same! I remember thinking that I wasn’t normal when someone told me that I spent too much time in hospitals. That wasn’t my fault it just happened but so what. No one have a right to put other people down. We all just have different life experiences and if most of my experiences happened to be in hospitals so what! I love to be unique and rare! J

So much has happened for my liking. Whatever happened in my life made me who I am and will never regret anything but sometime I do wish my life was easier and less painful so I would achieve things more quicker. But still, bring on challenges I'll cope but if I don't cope I'll cope in the end because I'm still here determined and carrying on with my life.... making it exciting.

I really appreciate simple things, family and great friends especially my best friend Pamela, who I have grew up with. But she moved to England and we still stay in contact. No matter how busy our lives are we still contact each other to check when we are free for SMS catch up. I always fly over there to spend time with her family and herself. Her son is my godson, another important person in my life apart from my family and Pamela.

I didn’t walk till I was about 1½ - 2 years old, I walked on my toes. So I got sent to hospital and Mum got told that they would cut my Achilles tendons. Turned out my Achilles tendons were too short. Then they put my legs in plaster casts for a while. It worked for a year but then I had to have more surgeries to have it done again. Then I had more different surgeries on my feet. They didn't really help. I then had a big operation, aged 16 years old, it didn't work for one of my foot. Spent 2 years learning to walk again and on my own. These 2 years were very painful, both emotionally and physically.  I spent a lot of time in physiotherapy. Very hard but I wanted to walk again so I had to do it. My big operation when I was aged 16 years old, in 2003, had a frame around my feet. The frame consists of metal rings, which go round the limb.  The rings are held onto the body by wires and metal pins, which pass through the skin and are anchored into the bone.

Go to 'The Truth" (2)

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