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.
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