Highs and Lows

Most of the time, I believe that I can bend the rules so that I can achieve my dreams and reach my goals. I have always been determined to prove myself - and to prove I'm just as able to do many things as other people are. Before I got too sick, I was a volunteer, and filled my every waking minute with fun extra-curricular stuff. I loved being involved with things, being part of a team, and being creative. Unfortunately, my world got smaller once my illness set in. I became mostly stuck in my house, with too many of my own thoughts in my head.

However isolated I can feel from the outside world, I'm extremely grateful to have access to the internet. It has given me access to study, and has allowed me to shop, see the outside world through photos and videos, chat with people, volunteer and make friends! It also allows me to meet and chat to other people who feel the way that I do, which is fantastic!

I have dreams of becoming an artist one day. I'm proud to have people feature my work anywhere, and I love to win contests. I want to learn everything I can - because with so much time on my hands - imagine the things I could end up knowing in my lifetime!

I love my family and my pets, and I am very grateful to live in my house. My life is pretty awesome, and I'm very happy most of the time.

However, sometimes living with my illness and disability can get me down. There are times when my optimism completely fails, and reality hits me like a sledgehammer. At times like this, I remember that I'm approaching 30 years old. I have certificates and a degree that I will probably never be able to use. I have run out of courses to study that are affordable and fully online. I can't attend classes, complete supervised placement hours, do an internship, or hands-on training. I can't find work, as I can't leave the house most of the time, and have bad patches with my illness where I might end up in bed for months at a time.

My sadness quickly snowballs. I wonder if I've reached the end of the line and learned all that I ever will learn, and achieved all that I will ever achieve. Knowing that my condition is degenerative frightens me, and the fact that I will probably never marry or have children makes me worry about the loneliness that the years to come may bring. I become terribly aware of the fact that it is unlikely I will ever have enough money to pay for the care I will need as I get older - and my future scares me!

At these times, it feels like my illness and disability have stolen all of my hopes and dreams for the future. It seems like I'm always watching life from the sidelines, powerless to do any of the things that I desperately want to do.

Luckily, my low points generally don't last too long. I have a fantastic support network of friends, family, doctors, and the other medical and healthcare people in my life, and I also have the support of my beautiful pets :). Difficult as it can sometimes be, I keep looking for ways to bend the rules of how things are, and I keep hoping :).

~Ad =)