When You Have to Plan Every Activity Around Your Illness

As I was growing up, daily functioning and activities that were unconscious processes were taken for granted. It’s like the saying “You don’t know what you have until it’s gone” hits closer to home when chronic illness reared its ugly head in my life. Most people don’t have to think about how to get dressed, brushing their teeth, when to shower, or doing laundry. Unfortunately, I took all of that for granted growing up. Most of us are taught at a young age to brush our teeth and shower, so it comes as an automatic process for most people. Now, every activity takes strategic planning that most healthy people don’t understand.

Healthy people have difficulty understanding how the little things in life affect those with chronic illness much differently with negative implications. I have to plan what days I am going to shower depending on the day I have had or how my body feels that day. If I wake up with my body feeling OK, I can get dressed standing up. If my body is hurting, stiff or weak, I get dressed sitting down. If I have to go somewhere, I have to plan when I have to start getting ready with enough time for unforeseen breaks I may have to take. I cannot be rushed and what takes a healthy person to get up and get ready takes about triple the amount of time for me.

Brushing my teeth standing or sitting is also daily activity that I have to think about depending on how my body feels. This is something we’re also taught at a young age so it’s an unconscious activity that we’re expected to perform. It is now a conscious activity that I have to think about as well as being a “little thing” that can be exhausting. I never thought something as simple as brushing my teeth would become a obstacle I had to overcome.

Laundry is planned every week according to how my body decides it wants to feel. If I wake up feeling good and it continues throughout the day, I will do the laundry. If I don’t feel well or my body is too fatigued or in pain, laundry day will have to wait. Unfortunately, that is how my social life is as well. I very rarely make plans ahead of time because I know there are times when every hour feels different for my body.

I have to plan for every action in my life since I became sick. Every activity that was once an automatic process in my brain has now become a conscious effort in every aspect of my life. When people say “You don’t look sick,” I simply respond with “It took me four hours to get ready to not look sick, so thanks!” I have found that if I respond in a way that is positive, my self-esteem enhances, which I have struggled with for too long.

There are too many moments I have missed out on because I was dwelling on some petty situation that, in the grand scheme of things, is not a big deal. You truly never know what you have until your ability to do those things is gone. As my life continues to change on a daily basis, for better or for worse, I have come to realize that I have to take the good with the bad and smile with the sad.

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