I really didn’t know where to start for my first real blog post. I decided that I needed to start by explaining what life is like for me right now. The problem is that it is difficult to explain what living in this dysfunctional body is like to able bodied people. I was recently asked by someone what keeps me going. I gave some response about my family and my faith but, while these things do help, the real answer is that I keep going because I don’t have a choice.
Daily life for me usually begins with waking up exhausted and in pain. Some days I sleep as late as possible. In part, this is so that I don’t have to be awake and face the reality that my life is nothing like I thought it would be. It is also an attempt to make my body less tired. In the end it doesn’t really matter how much time I spend in bed I am always exhausted.
After waking I have to take my meds and prepare my tube feeds for the day. While there are days where I choose not to tube-feed (although I need to) most days this is necessary. My pump is plugged in all night while it runs so that it doesn’t need to be plugged in during the day. Each morning I need to change to a new feed bag and add a new supply of tube feeding and water. The water is necessary both so that my tube does not get clogged and to help me get some much needed hydration. My feeding tube bag and pump stay in a backpack that has been altered to hold them so that it is easier to be mobile during the day. I am also in the process of slowly increasing my feed rate in an attempt to get to a point where I am getting adequate nutrition in a day. This means calculating what the total volume over the day is based on the new hourly rate.
After setting up my tube feeds my day can really begin. On a good day this means getting dressed. On a bad day I often stay in my pajamas all day. I usually start the day with a cup of coffee (one of the few things I can usually keep down) which helps stave off my migraines. Sometimes, if it is a good stomach day, I may make myself an egg for breakfast.
After all of this I head back to my room, where I spend 90% of my time. I will sometimes read a book for a little while (I try to read at least 2 books a week) or I will watch tv. I spend most of my day sitting in bed, sometimes playing games on my phone or coloring in a coloring book. Often when I tell people that most of my time is spent in bed watching tv they respond with ‘I wish I could spend my day like that!’ What people don’t understand is that lounging in bed all day is fun for a day or two when it is a CHOICE. When you are stuck in bed all day it is not fun and it gets old really fast. I often find myself looking at the clock counting down the hours until I can go back to sleep and escape my reality.
Sometimes, on a good day, I may get out of the house to go to starbucks or to visit my mom’s classroom for a few hours to work with the kids. This can be a nice break from the monotony of staying in the same room day after day, but it is also a reminder of the fact that I am not nearly as independent as I would like to be.
The evenings are often spent in the same room that I have spent my entire day. I sometimes am able to eat a little something for dinner, but not always. On some days I will help my mom grade papers or we will watch a show together on tv. If I am feeling exceptionally energetic (and it is not raining too much) I may even take my puppy, Apollo, for a walk.
After a day that looks pretty much the same to every other day I once again make sure that I have enough tube feeding formula to make it through the night. This means adding another bag and more water. Then I will plug my pump in for the night, take my meds, maybe read for a little bit, say goodnight to Apollo, and turn out the light. I then spend the night trying to sleep as much as possible before waking up and doing it all over again.
There are days when I get out of the house, to go to the grocery store or to a doctors appointment, and rare occasions when I spend time with friends. All of these things take spoons. When I hang out with other people or spend time away from home I often pay for it the next day or the next week, which is sometimes worth it. In the end most days look the same as every other day. So to honestly answer the question of how do I keep going day in and day out? I don’t really have any other choice but to keep going in the body that I am stuck in.
Grasping at Spoons 