Sometimes, ignorance is bliss. I always say that I wish I knew what I was in store for when I was diagnosed with ulcerative colitis but the more I think about it, the more I realize how truly detrimental that would have been for me. I have been up since 2am worried about something I have to do on Thursday. I have also spent a good majority of the weekend, and really the last few weeks without sleep in part because of something I was asked to be a part of that I thought I could handle.
I was contacted by someone from a new health website to be one of their IBD pioneers. Basically, to answer questions that other members post and share my story from the beginning; Focusing primarily on what I would want to know as a newly diagnosed patient of either crohns disease or ulcerative colitis. Initially, I was really excited about this opportunity but as I began writing, I realized how much I had to reflect back on in order to do what was really asked. I was forced to truly dig down deep and think about things I really have tried so hard to forget and for the most part have succeeded in doing so. The only time I really think about some of the details that happened in the first couple years of my diagnosis is when I am asked.
I am really trying to do things that are positive for me and that bring my mind towards the future. Writing this blog has been really helpful for me as I have mentioned a lot. I have volunteered a couple times with Jay from Get Your Guts in Gear and that has been really great for me. I started the IBDating facebook page with my friend, Sara, and that has been really beneficial for me. As I began to really think about it, I notice how doing things that are focused on the future and things that I am looking forward to is bringing me up. Writing and sharing more and more of myself on this blog has allowed me to expunge many emotions that I have kept inside all of these years. Putting things together for the next Get Your Guts in Gear ride is exciting because it makes me think about all of the people who I haven’t seen in a while and look forward to seeing again soon.
One of the things that writing has helped me with is understanding the deep seeded reasons behind certain emotions and reactions that I have. It forces my mind to really take a look at why some things are having a negative impact on me, and what some of the reasons are for why other things that I am doing aren’t. I have come to realize and accept that I do have some limitations. I don’t have enough distance to talk about what happened to me when I first got sick. It is not in the past for me just yet and the only way it will really be is if I focus my time and attention on things that lift me up and things that I am looking forward to doing, and not those that I am up all night worrying about.
The event on Thursday is a focus group for people with autoimmune diseases. It is really just a way for the founders of the site to get feedback on the most helpful ways their site can be utilized by patients. But, what I have come to realize as I started being more involved in this new website and what I expect will happen on Thursday is that I am hearing more stories about different autoimmune diseases. I know once you have one autoimmune disease (like ulcerative colitis), you are more susceptible to getting another one. This concept has only been ingrained in my head since I was diagnosed with pyoderma gangrenosum last November. The very thought of it scares me to death. The very thought of hearing about how someone with IBD was newly diagnosed with multiple sclerosis or lupus, makes me understandably scared out of my mind. I am trying to stop pushing myself so hard because I want to make my parents proud and live up to my own expectations of where I should be in my life now. I am trying to really understand myself better so that I don’t put myself in a situation that has a potential to derail my progress.
I think it is so important that we all understand and accept our limitations. Sometimes, we are simply not ready to hear or read certain things. Sometimes, knowing every possible thing that could happen is not good for our psyche. We need to all try to learn how our mind and body work and react to things so that we can do our best to take care of ourselves. Because when we take care of ourselves and are attentive to our own individual needs, we will come out a lot stronger in the end.
“We think being hard on ourselves will make us strong. Actually, nurturing ourselves will make us strong.” –Julia Cameron
(Thank you Val for the great bookmark! xo )