No matter how much I want to pretend ulcerative colitis never plagued my life, I am reminded everyday that it did. I may be a lot better off than I have been in a while but it doesn’t mean I am not without my challenges.
Being part of the IBD community allows me to feel “normal.” It allows me to realize that some of the things I am thinking, feeling and doing are understood. I feel connected and supported.
I think I never understood what normal really was. I always wanted to be like a regular person and even though my parents tried to instill in me that there was no such thing, I didn’t really believe it. My life was filled with people who didn’t really need to think about their health too much. Most of the people I knew ate what and when they wanted, fell asleep at normal hours, was able to commit to school/work/goals and actually finish what they started. No one I knew lived in agony every day. No one else I knew lived in fear of eating something “bad” and winding up in the ER.
All of these things have impacted me so much and yet I still have a should mindset. I should be over everything by now. I shouldn’t be phased by things anymore. I should just live like I would had nothing ever happened. I should have eating figured out. I should be sleeping every night.
I haven’t been feeling well the past week. My ostomy has been causing me to empty it every hour and I feel more nauseous than I have in a long time. I have a cold and cough that won’t go away. I had a low grade fever yesterday. I refilled my 32oz water bottle twice in the middle of the night. I have been guzzling juice the past three days (something I never drink.) I have just been feeling blah.
All of these things make it ten times harder for me to function the way I want to. I want to wake up feeling rested, go to work, come home, get some things done, go to sleep and know I will be able to fall asleep fairly quickly (and stay asleep for more than two hours at a time) and then do it all again the next day. It takes me a while to recover from not sleeping, a cold and little things like that.
It sucks. It is frustrating. It makes me feel like lazy bum when all I want to do is feel like a productive member of society.
I know I have some work to do to get myself together a little more. I know it does take time and little things might push me back and take me a little longer to recover from than other people. If it wasn’t for the IBD community, I would be sitting here wondering what was wrong with me. Thank you to everyone who shares your experiences day to day so that other people can take comfort in knowing they are not alone.