Inflamed and Untamed

It’s Invisible Illness week and now that I am back home from the Get Your Guts in Gear bike ride (i’ll blog about that later) I am ready to focus my attention on II week. As I was browsing the internet last night on all things Invisible Illness one thing caught my eye - a video titled Who Am I Now? After Being Diagnosed. The title of the video alone struck me and I was already blogging away before I actually watched the video (which I am doing now, while writing this). 

Who am I now? 

Think about that for a second…

I know you have probably thought about it before. Maybe you think about it ALL.THE.TIME…your life has changed significantly since you were diagnosed with this disease hasn’t it? Do you often find yourself fantasizing about the person you used to be? Thinking about how able your body was, dreaming about a sport you used to play so well, or all the things you used to be able to do without thinking twice about it? Do you think about how your body used to work before a certain surgery you had, or what it used to look like? I know that I used to do this often, and still during tough times find myself thinking about who I used to be “before I got sick.” I spent time with a friend this past week who is a bit newer (newer? I made that word up) to being sick than I am. I have had more experience living this life and so maybe that puts me at a different stage in all this? That does not make me better or worse or mean that I have one-upped her in any way, but it made me realize that I have come a long way and that there is still room for improvement. 

Here are my thoughts: Fantasizing about who you used to be isn’t healthy, though probably not always unavoidable. I admit it - I’m guilty. I think about the body I used to have and how capable it was. I miss the days that I danced, I think about how I used to go to school, work 2 jobs, and maintain a social life without thinking about it. When things get hard I get negative and wish that I could go back, or I watch my healthy friends and wish that I had their lives that they take so for granted.

There have been times that I’ve been flat out angry with life, my body, my disease…

Times where I have lost hope for a future that could be anything I wanted it to be.

Now I am able to recognize that those times come when my health is at it’s worst and I am fed up and frustrated and mentally it all becomes too much at times. Thankfully now, after so many years of being this sick, I have come to a point where I have mostly accepted who I am currently. And I know that things are always changing and that my health today is not going to be the same a month from now, or a year from now (it could be better OR worse) so I better learn to roll with the punches. I realized this as I chatted with my friend who is having a hard time coming to terms with life the way it is today. Like me, she is driven, hard working, and pushes herself. She doesn’t like to settle and maybe pushes herself too much (love you)? I listened to her talk to me about the life she used to have and I heard her question “is this my life now?” often. It’s not wrong, in fact, I think it’s completely normal to go through this. To mourn life the way it used to be, to dream of going back, to wonder what the future holds. Has our disease or illness taken away everything we wanted for our lives? 

Here is my mission for you if you choose to accept it. Write about who you are now. For me it has certainly been a journey of coming to terms with what my life is now. I had to let go of some dreams I had and I had to learn to rethink the way I think. I am stubborn, and EXTREMELY driven, passionate, and maybe a leeeetle bit hard on myself. I don’t like to accept “failure” and used to have to be the best at everything. This past weekend during the GYGIG bike ride I realized how far I have come just by being able to say “I can’t” or “I need a break”. The old Sara would have beaten herself up for that. She would have thought that everyone must think she’s the biggest failure in life. She would have thought about how physically fit she used to be and what she used to be able to do and compared herself with that. Sure, she still feels bad, but she was able to recognize her new limitations and be mostly okay with them. Huge accomplishment.

Right now I can’t do some things I want to do…

In the future maybe I can?

Or maybe my health will never allow me to get to that point again.

I have to accept that because really I have no other choice than to accept it, do I? If I don’t life will be a lot harder. Some things are out of my control. Try as I might, I can’t control what medications will work or not work. I can’t control future surgeries and how they will affect me. I can’t control when ulcers and inflammation plague my insides, when I will be doubled over in pain from a blockage or scar tissue, or anything else that might happen. So I have learned for the most part to be a go-with-the-flow type of person. This is certainly not the type of person I used to be but as each year passes, and more and more happens, I realize that in the end it’s all okay. It’s okay because I am here, I don’t give up, and life is still filled with it’s good times. I have friends, I laugh, I have love in my life. In the end does it matter that I am a high school teacher, working in a salon, or doing something completely different? Does it matter what grades I got in school or how long I was able to ride my bike? I think not. I think in the end when I look back, all I want to be able to do is say I tried my best, I laughed, I smiled, and I have love in my life. 

So write about who you are now. You can keep it to yourself or you can share it with me. Maybe I will share what you wrote with everyone here. It may seem a little cheesy or like you’re writing out positive affirmations but it helps. It helps to remind yourself that even though you are not doing the things you wish you were doing, that there is still so much you do. To give you some ideas - here is who I am now, after being diagnosed.