You wake up every morning, roll out of bed, head for the coffee pot and the shower, and get ready for your day. This routine, like for many of you, was the way I had started my day for as long as I could remember. A mad scramble if the alarm didn’t go off so I wasn’t late getting the kids to school or heading to work. This fast paced and crazy life was my norm, just like it is for so many people. However, what I didn’t know then, was that one morning, my norm was drastically about to change.
I had always been an active person, playing sports as a kid and a teenager, working since I was 14, and breaking many bones along the way. I was always on the go. I survived on very little sleep. So, that day when my left shoulder began to hurt, I just figured I had done too much and wasn’t worried about it. Little did I know that my shoulder hurting was so much more then overdoing it. It lasted for about 2 weeks, and then was replaced by pain in my right shoulder. Again, I just figured I had overcompensated for my left shoulder and didn’t worry about it. Unfortunately, a few weeks later, it had moved into both my arms and hands, and I could no longer hold a pen, or even silverware. It was then I knew that maybe I needed to go see a doctor.
That trip to the doctor would be the beginning of a long road that, to this day, I am still traveling. They first assumed that what I had was Rheumatoid Arthritis because there was a family history of it. By this time, it had also worked its way into my legs as well, so I was now walking with forearm crutches. I spent 2 years trying various treatments for RA, including the low dose chemo, but there didn’t seem to be any change. I would have good days and bad, but nothing seemed to work to make it go away. Finally, the doctors decided that maybe it wasn’t RA, so we moved on to the next group of letters and they thought that is was MS (Multiple Sclerosis). Unfortunately, my body wasn’t giving all the signs they need to confirm a diagnosis, though it is what a large sampling of different doctors seem to believe I have. All I know is I don’t care what they want to call it, I just want my life back.
I want that crazy life back; being able to not have to think about what I am going to do and how much I may pay for doing it afterwards. You see, most people take those crazy days for granted and complain. I used to too, but now I would give everything to be able to jump out of bed and jump into the shower because I am running late. Now, with whatever it is that I have, I am no longer able to jump out of bed. Getting up in the morning is a slow process, as is just about every part of my day. I have to wake up and judge what I can do that day by how my body feels. The problem is my mind is stuck on who I used to be before this disease took over my body. In my mind, I think I can still do everything I used to, but I end up paying for it on those days.
In the last 4 years since all this started, I have begun to learn what I can and can’t do. Sometimes I am stubborn and still think I am superwoman and can do it all, and I pay dearly for those days. I suffer a lot more pain then I ever let show and am pretty stubborn that way. I guess in a way, it is my defense against this disease. While my body realizes that something is wrong, my mind still thinks I am the same person I have always been. My mind has just been trapped in a body that won’t let it do what it wants. It is a very hard thing to accept, especially when people around you can’t understand it either.
It is my hope, that through my writing, I can help educate those of you lucky enough to be healthy. There are many diseases and disorders that develop and change people’s lives when they didn’t want it to change. There are many people out there, like me, who have a mind trapped in a body that is broken. There are so many of us out there who’s mind says “yes”, but who’s body says “no way”! We may walk funny, or not at all. We may have hands that don’t work. We may take a lot longer than a healthy person to do something. But, inside we are still the same person we used to be. We are just battling our own bodies and trying to teach our minds to accept something, that even in our heart, we don’t always want to accept.
For an amazing story to help those of you that are ‘healthy’ to better understand what life is like with a chronic illness, please visit The Spoon Theory. It is the best way I have found to explain what my life is like.
Sources: Christine Miserandino, The Spoon Theory, ButYouDontLookSick.com
More from this Contributor:
Living With an Undiagnosed Disease
Funny New Year’s Resolutions for Those Suffering From a Chronic Disease