"The greener grass that turn my head so swiftly did turn brown,
'cause every little dream I've built is always tearing down.
I never knew old Charlie's shoes could have so many tacks,
of disappointing sorrows. I wish he had 'em back."
--Billy Walker "Charlie's Shoes"
Dear Diary,
I've decided to show you what a walk in my shoes looks like. Just a small glimpse. Perhaps, than you will realize a little about what my life is like. Maybe you'll judge me for this. Maybe you'll think I'm not fun.( I think some people do) Or maybe just maybe you will realize that the things you take for granted in life should be appreciated. Maybe you'll realize that your life isn't so bad. Maybe you'll realize what life is like for the many of us in the world with chronic illnesses and look at us differently. Because maybe you'll realize that we strive to have normal lives to. It just takes more work for us to be "normal". What is "normal" anyway? I think maybe being different isn't so bad anymore. Maybe normal is overrated.
This was basically a walk in my day today.
The times may be a little off.
You get the idea.
1 am - My IV nutrition was stopped temporarily in order to start IV antibiotics.
1:15 am - My sugars started dropping. (How do I know this? Well, I had to check them.) This happens because my body has a hard time adjusting to being off the nutrition which provides me my sugars for a day.
1:30 am - My sugars drop more. I have to replace them fast with a dextrose infusion.
1:35 am - I hook back up to my IV nutrition. I read and go to bed.
8 am - I must wake up. It's time for IV antibiotics again.
8:30 am - Back to IV nutrition and perhaps sleep.
12 pm - Time for another Med infusion. IV nutrition is done.
12:15 pm - I must check my sugars in case the med dropped them.
12:30 pm - Repeat my sugars and switch from med infusion to a dextrose infusion.
1 pm - My infusions are done for now. I must check my sugar one last time.
I do what I need to do for the day. Shower (I need to place a guard over my central line.). Do college work. Take naps. Watch TV. Play video Games. Talk/hang out with friends.
You must remember that during this time I take meds to control my illnesses and symptoms. I may even get sick and have to rest for a while. My body isn't quite as energized as it once was. I also must work on trying to do Jejunal ( that is part of your intestines) feeds during this time. If I go out, I must remember to take my supplies, Tubes, Medicines, and maybe I even have to carry infusion bags with IV nutrition or formula. I'm never quite carefree. I would not survive being carefree.
7:30 pm - I must give myself pre-meds so that my med infusion doesn't make me sick. (I forgot to add this last time. I do that sometimes. Its hard and easy to remember everything. My day involves schedules just like anyone else. Except mine are different.)
8pm - Time for my med infusion.
8:15 pm - Time for me to check my sugars.
8:30 pm - Time for me to check my sugars and switch to a dextrose infusion.
9 pm - Time for me to check my sugars. My destrose infusion is done. I must hook up to my IV nutrition.
AND REPEAT...(I've probably forgot some things. I think you get what I'm trying to tell you though. Maybe not)
Believe me in saying that my day does not always work out or go like this. Like everyone, sometimes I need to deal with a curveball. Perhaps, diary, you know what this feels like. Maybe in a different way. As you can see, my days must consist of some trials. In a way, they are like your days. Just different. I deal with the fact that I need to do certain things to keep me alive. I cannot simply forget or be care free. I cannot mess up. Mess ups can be fatal. People do not understand how complicated it can be to stay alive. There body does this for them. They don't need to keep tabs on everything. I am not one of those people. I think you understand what I'm trying to say. I will talk to you later, diary.
Love Forever & Always,
ME
'cause every little dream I've built is always tearing down.
I never knew old Charlie's shoes could have so many tacks,
of disappointing sorrows. I wish he had 'em back."
--Billy Walker "Charlie's Shoes"
Dear Diary,
I've decided to show you what a walk in my shoes looks like. Just a small glimpse. Perhaps, than you will realize a little about what my life is like. Maybe you'll judge me for this. Maybe you'll think I'm not fun.( I think some people do) Or maybe just maybe you will realize that the things you take for granted in life should be appreciated. Maybe you'll realize that your life isn't so bad. Maybe you'll realize what life is like for the many of us in the world with chronic illnesses and look at us differently. Because maybe you'll realize that we strive to have normal lives to. It just takes more work for us to be "normal". What is "normal" anyway? I think maybe being different isn't so bad anymore. Maybe normal is overrated.
This was basically a walk in my day today.
The times may be a little off.
You get the idea.
1 am - My IV nutrition was stopped temporarily in order to start IV antibiotics.
1:15 am - My sugars started dropping. (How do I know this? Well, I had to check them.) This happens because my body has a hard time adjusting to being off the nutrition which provides me my sugars for a day.
1:30 am - My sugars drop more. I have to replace them fast with a dextrose infusion.
1:35 am - I hook back up to my IV nutrition. I read and go to bed.
8 am - I must wake up. It's time for IV antibiotics again.
8:30 am - Back to IV nutrition and perhaps sleep.
12 pm - Time for another Med infusion. IV nutrition is done.
12:15 pm - I must check my sugars in case the med dropped them.
12:30 pm - Repeat my sugars and switch from med infusion to a dextrose infusion.
1 pm - My infusions are done for now. I must check my sugar one last time.
I do what I need to do for the day. Shower (I need to place a guard over my central line.). Do college work. Take naps. Watch TV. Play video Games. Talk/hang out with friends.
You must remember that during this time I take meds to control my illnesses and symptoms. I may even get sick and have to rest for a while. My body isn't quite as energized as it once was. I also must work on trying to do Jejunal ( that is part of your intestines) feeds during this time. If I go out, I must remember to take my supplies, Tubes, Medicines, and maybe I even have to carry infusion bags with IV nutrition or formula. I'm never quite carefree. I would not survive being carefree.
7:30 pm - I must give myself pre-meds so that my med infusion doesn't make me sick. (I forgot to add this last time. I do that sometimes. Its hard and easy to remember everything. My day involves schedules just like anyone else. Except mine are different.)
8pm - Time for my med infusion.
8:15 pm - Time for me to check my sugars.
8:30 pm - Time for me to check my sugars and switch to a dextrose infusion.
9 pm - Time for me to check my sugars. My destrose infusion is done. I must hook up to my IV nutrition.
AND REPEAT...(I've probably forgot some things. I think you get what I'm trying to tell you though. Maybe not)
Believe me in saying that my day does not always work out or go like this. Like everyone, sometimes I need to deal with a curveball. Perhaps, diary, you know what this feels like. Maybe in a different way. As you can see, my days must consist of some trials. In a way, they are like your days. Just different. I deal with the fact that I need to do certain things to keep me alive. I cannot simply forget or be care free. I cannot mess up. Mess ups can be fatal. People do not understand how complicated it can be to stay alive. There body does this for them. They don't need to keep tabs on everything. I am not one of those people. I think you understand what I'm trying to say. I will talk to you later, diary.
Love Forever & Always,
ME
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