I would like to think that I am pretty easy going, and can go with the flow. However, I soon realized what little control I have over my disease and if I can accept it. I have learned different ways to cope with my illness, but still to this day I struggle and get mad at myself for not being able to control what is happening to me. How could I possibly get mad at myself for something I have no control over? Well, easy. I want control over my body! I find myself getting upset when I learn I can not do everything I used to be able to do.
Many days, the fatigue is so powerful I find myself having to take a nap at some point during the day. Or, just doing simple tasks around my apartment has become very challenging for me. Doing laundry for example, has become a day event. I do have to go up and down stairs to get to the laundry room, but I should not be worn out all day from it. Also, cleaning has to now be separated into days. I know some of you are thinking why on earth does this woman strive to clean everything in one day? Well, because I enjoy having a clean home and I take pride on always having my apartment look and feel good.
My doctor explained to me that my body is constantly fighting against itself and of course, I am going to be tired. If I use that extra effort trying to get everything done in one day, then I can make myself pretty sick. I am sure many of you are aware of “The Spoon Theory”. If you are not aware of it, I highly suggest you read it. It is for anyone with an invisible illness, and if you do not have an invisible illness, it can help you understand it a little better. Here is the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I also have to keep in mind that I am on a lot of medication, and with it constantly changing the way it is it can cause a lot of fatigue. Since I am still some what used to this disease, learning all this new information is exhausting. In time, hopefully the tiredness gets better and if it doesn’t then I will have to keep on going.
Another part of having no control, is of course the flare ups. I have been on a pretty strict diet, and have not had to many flare ups. Although, the third time I attempted to taper off the prednisone I got really sick. All of my symptoms came raging back, just like before I was even diagnosed with Ulcerative Colitis. I was very upset and of course called the doctor right away. They ended up putting me on a higher dose of the steroids and added a new medication to the list. I almost could have cried, why couldn’t I just take medication and live my life like I used to? Why cant I have control over how I feel if I am doing everything as advised? I eat foods that wont irritate me, I gave up all soda products, I get plenty of rest, I take my medicine, I try to stay “stress free” and I do all of the doctors orders. Yet, I still struggle and I never know when I will have a flare.
When I do have a flare up, I do not feel comfortable leaving my home. I can not eat, and I can not help but hear my doctors voice in the back of my head saying “If you have this many bowel movements a day you must go to the hospital!” Great now I am counting! As if there wasn’t anything more I wanted to do, than count how many time I have been to the bathroom today.
When I say “Don’t be your worst enemy” I mean don’t fight yourself, and take care of YOU! If you are too tired to go out with friends, then stay home. Or, if you are to tired to clean the house then wait another day, tomorrow may be better. If you like setting goals for yourself like I do. Instead of saying “I am going to get all my laundry done today, and then go grocery shopping tonight”. Try, ” By next week I want to have my laundry done and at some point I have to go grocery shopping”. This way, you don’t feel bad about not getting everything done all at once. The best thing you can do is accept that you have no control over this and it is it okay to put yourself first. If you don’t listen to your better instinct, you can get sick. It is okay to not feel good and to be frustrated with this disease. Whoever said having IBD was something to be happy about?