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