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A Regular Day for Healthy People Can Feel Like Running A Marathon for Me

My Window is Shrinking

Lately, because I have been feeling so bad, I only have a few good hours during the day. I call this time ‘my window’. It’s the time in my day where I feel well enough to do the things I need or want to do. If I am in remission my window is wide open; I have the whole day and can usually accomplish everything on my to-do list. If my disease is active or I have an increase of symptoms then my window shrinks. The more severe my symptoms get or my disease becomes the smaller my window of time gets. 

If I do 'THIS' then I Can't Do 'THAT.'

 I only have a window of time during the day to get things done and once it’s gone you can pretty much forget about me doing anything else, so I have to choose wisely what I want to do with my day. I suppose it’s kind of like the Spoon Theory, but I hate the spoon theory because it’s not a theory and because of other reasons I will one day explain. Maybe.

Currently my Crohn’s disease is pretty active again. As in: I definitely have inflammation in my intestine as confirmed by endoscopy. If I had a full time job right now this would be the point where I would have to start calling in. I hate the way chronic illness can make a person seem unreliable. The extraintestinal manifestations of my IBD are actually bothering me more than my guts are right now; though those are bothering me too.

My arthritis is really interfering with my life; it hurt to do things that should be simple this week. These are the times when I am reminded that I am sick. When things most people NEVER think about, like showering or brushing my hair without pain, becomes difficult. If that is difficult for me you can imagine what it is like for me to walk my dog, clean my house, run errands, or do all the other things healthy people don’t have to think about. 

Forced to Make Tough Decisions: My Window of Time is Decreasing

This weekend I have a birthday party to attend and some of my close friends and I are meeting beforehand to get ready together, have some drinks, and chat and then we are going out. I was asked to cover a shift that day before we all go out and I had to really consider whether or not I could. 

Would I be in any condition to wake up and get ready? How would I be once I got to work? If I work then that would probably take up my entire window of time I have during the day so would I be able to go out that night? Having to think this much into it is not how people my age should have to live their lives.

As I was thinking about this today in the company of my friends/co-workers I realized just how different I am. None of them have to think about things like this. Most people don’t think about getting up, getting ready, going to work, and then going out as something that will completely exhaust them.

I wish my window was as open as theirs…


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