The Truth (3)

Carried on from "The Truth" (2)

I then knew that it would be hard to plan my future because something would always come up. I took many courses in evenings to make up but either failed or dropped out because of my health issues and operations. Sometime I was angry because I had plans and I wasn't who I planned to be.

Looked at same walls, ceilings, and beds. Hospitals were my home but knew there was a big life out there. I just felt safe in hospitals even though I had to put up with a lot of needles and many more but back then it was easier to put up with a lot of pain and needles etc. Because I knew what was happening but out there, it's a big world and damn it can be hard.

When younger, I wanted to be active always involved in sports keeping busy and go travelling around the world in a year by the time I was in my late teens but that never happened as I always was in hospital or at home recovering.

Looking back I know it made me who I am and that I can't always plan but know there is something out there for me making me who I am.

I’m facing double amputation in the future, it have to be done. But I’m putting it off because I don't think I will handle waking up seeing empty space in the bed knowing my limbs (below the knee) will be forever gone. It's harder when I know I have to deal with it with little support because I know a lot of people will freak out. I know I will have support from my best friend - not easy when she's in England, and support from my family & hospital team but still, not enough for me because I know when I have recovered I have to go back to outside, the big world and deal with stranger's comments, and attitudes etc. That's harder than the actual double amputation. I’m afraid that I'll wake up losing a bit of me because I might not be so positive? Or so happy? Or so eager? Who know? I will never know till the day comes. I'm hoping I will be strong enough to deal with it. It means putting my life on hold once again, can I handle that? I don't know because I'm eager to do fun crazy things and achieve my dreams right now! It will be hard knowing people out there are having fun and carrying on with their lives.

There are always people who are worse off than me and I'm selfish for being afraid about double amputation but still, it's a huge thing.

Knowing that I have to put my life on hold because I know once the wounds have healed I would be determined to learn to walk again with prosthetic legs, from the knees I hope.

Finding it hard to tell people because I know how they will react

Wanting to train for a certain career but don't know if it will be worth it because I know my life will be on hold and I have to be prepared to accept the fact that I might be in a wheelchair if it's too sore to use prosthetic legs because of my skin.

Hoping I will be more active afterwards but who know.

Wanting to travel around the world for a year but can't because would have to come back to my team of specialists and I would need a lot of prescriptions. So many hassles. I have to experience some countries for few weeks then back home to save up and carry on with my day-to-day life, before I go travelling again. I would be knackered if I went for a year so it's impossible for the moment.

So many things I want to do but I have to be realistic and save my energy and do things bit by bit. Very annoying but that is the only way I can survive. If I tried to do everything in a short time I would be dead because it would be too sore and I won't want to live like that.

I'm hoping after the amputation I might be able to travel more and being more active but who know.

Many people always have said I’m mature, it's because I had to grow up fast and made hard decisions but that's life.

I am a fitness freak and always spend my time in gyms using weights. Who knew I would be a fan of weight lifting putting me in pain even though I had a lot of pain but gym pain is the good type. I have always said my health issues is putting me in 'bad pain but gym give me 'good' pains :)

Loving gym because it has great benefits but many people out there who are not into fitness as much as me will never understand why I’m a fitness freak who like clean eating unless they get into it more. But trust me there’s many benefits and one of them are hopefully gain a lot of upper body strength all ready for my double amputation - don't want to have both done at same time though, hoping to have one removed one at a time it mean more time in hospital and all that but if I have both done at same time then I lose all of my independence and I’m not ready for that.

People who knew me and know me I want them to look back and realize I had a great life partying, travelling and working... please remember that and treat me normally at the moment because I still can work, party and travel.

Sound like I’m complicated lol but really I’m just a simple girl who love life but just happen to have health issues and no one need to deal with my health issues, just accept me :)

I will hate being remembered as the deaf girl with a rare skin condition and many health issues, spent a lot of her life in hospitals... rather be remembered as crazy girl who love to do things that would give mum heart attacks, motivated people and was determined to achieve a great life no matter what life threw at her.

What I have learnt from my life is that emotional pain hurts more than physical pain.

Life is too short.

Make the most of your life.

Thanks for reading J

The Truth (2)

Carried on from "The Truth" (1)

When I was aged 21 years old, I had MRI scan after having another operation to remove some bits of cochlear implant. MRI scan was the final piece to confirm that I have Osteoarthritis in my feet – still work and don’t let this be a barrier in my life. I knew for ages before I had MRI scan but it wasn't confirmed. Had many different scans before MRI scan.

I was scared that if I tell the truth then I might not be able to get jobs even though I knew there were laws about discrimination. But still, can't help thinking about it really.

Also I felt that people might get wrong ideas thinking I can't do anything so they leave me out. That make me angry because they should ask me if they want me to join in. It's nice to be asked.

People do assume I can't do certain things but why do they think that?

They should ask me what I can do and can't do it's that simple I don't bite! J

Sometime it's easier to leave it because I'm too tired to deal with everything.

Sometime I feel like I'm doing it all on my own.

People know me as strong person but guess what I'm only human and do have feelings. The more bad things that have happened in my life make it harder to trust people and that's sad because I don't like to keep anything in but have to because it's easier.

There's more than one sides to me. I may act and look strong but not always, I do have bad days.

Now and then I am soft and do get hurt.

I do have bad days when I'm angry with everyone but that never last for long because I'm positive person and try to see the best in everything. Heck, I’m only human I am not always positive though.

I won't say I always cope, in my 25 years of life I had to put up with a lots of shits, and sometime get lost along the way not understanding why some people leave me out. It fucking hurt and it confuse me. Some people don't have the balls to tell the truth about why they are leaving me out.

If I demand the truth I’m seen as aggressive bitch.

If I don't demand the truth and leave it I'm seen as the person who give up.

I can't win really.

Sometime I can't be bothered to go up to people and ask why they are being funny towards me, maybe because I know they are draining my energy away and maybe the answers might make me unhappy and make me think there are more negative people than positive people.

I will never say my life is hard but some days I do think that no one will cope with my life because I’m fucking rare :) Nothing is the same daily because one day I might wake up and can't move my fingers because skin split and take ages to heal. One maybe I might wake up with sore eyes I know I might get headaches that day. One day I might wake up bursting with energy wanting to take on the world, full of determination to achieve my goals.

It's a roller-coaster I never know how much pain I will be in till I wake up and walk to make breakfast, if so much pain then it can change my plans for the day. But the truth is that I am always in pain 24/7 but don't want people to treat me different. I rather have a life so if I am in pain so what. I don’t have a carer, yet I live on my own and I love it! Mum gives me lifts now and then for my big grocery shopping.

If I open up more about my life, people always pity me or leave me alone. Apparently it’s because they think my life's hard and depressing. Why the fuck do people behave like that, it's my problems they don't have to deal with my health issues really.

I believe I was bought on this world to help people.

Always wanted to be a model as I'm tall and slim but when I got older I knew good skin was necessary so left it and started thinking about what else I wanted to be. I knew I wanted to be a youth worker because I was a role model and loved working with youths. People tried to stop me from studying to be a youth worker because it was 'a waste of my time' but of course me being determined I refused to listen to them and went to become a youth worker and loved it. Never told anyone about my Osteoarthritis  because I was scared of discrimination but it does happen and it has happened in my life, which was very hurtful.

It can be hard to plan ahead in the future because complications always happen. I try my hardest to push barriers down or work around them but not always easy though. Sometime I have to be sensible and realistic.

Remembering that I had a big operation aged 16 years old, that was frigging hard going from being popular having school friends, friends in youth club and outside school friends to almost zero friends but always had my best friend Pamela - always have stuck with each other for 20+ years and I'm forever grateful for that. So-called friends always came up with excuses saying they dislike hospitals or couldn’t handle the fact that I had metal frames with pins (Really hurt!) around my feet.

Finally recovered 2 years later walking on my own, and went to college aged 18 years old. Spent 2 years recovering at home after my big operation and hospital stays learning to walk again. Spent these times being tutored at home which was better than going to 2nd school as I hated that school much.

Made new friends at college, it was the best year of my life because I didn't want any more operations till I finished my 1st year at college so made the most of it partying away. Once the 1st year was up, I was back in hospital all summer (literally) I had one operation in July but developed a really bad infection that made me go back to hospital in August, again I lost more friends in deaf community because I didn't party with them during the summer. That was hard because I loved partying but had to stay in hospital. For my 2nd course in 2nd year, it was hard because I joined few weeks after my classmates and didn't bond with them well. I was still recovering from bad infection, the treatment took months and it was so hard because I had to focus in college and having treatment at same time. I then dropped out in approx. late Oct because the side effect from my treatment was so bad and I wasn't happy. I'm always grateful for my 1st year of college partying and passing my 1st course. I then spent the following months at home recovering till December.

Go to "The Truth" (3)

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)