When I read the title of this post, Defining Fatigue, I think to myself how in the world can I define fatigue as a chronically ill person? Seriously?
To the ordinary person fatigue is when they have to wake up early, go to work for the day, run to the store, come home made dinner, do some laundry and/or other house work then you became tired and go to bed only to have to wake up the next day and do the same thing over again. Or maybe it is a sense that you have done to much and just need to rest, sit down somewhere in the day and close their eyes and take a quick cat nap so you are able to finish the day and all the things on your list. Doing all the things on your list but never having to think about your body keeping up with that list. Your body does what your mind tells you to do and not the other way around.
To me fatigue looks very different. Sure, I wake up with the same list in my head or on paper because I can't seem to remember anything these days. The night before I may think to myself, OK self, tomorrow you are going to clean the floors, do the laundry, dust, cook something, blah, blah, blah. Then I get up in the morning and I hear, self, maybe you are just going to do a load of wash and the floors can wait. Maybe we will just have tomato sandwiches for dinner today because there is no way I can make anything else, it takes too much energy. Then there are the thoughts of, I really want to get a job. Even if it is just a few hours a day somewhere, the self says, get real you can't even do two or three things on your list how are you going to get a job? I could go on and on but hopefully you get the picture.
So how do I, as a chronically ill person, explain my fatigued compared to someone else? Fatigue to me is in control, a monster that runs my life. I hate this monster. Imagine being the most tired you have ever been, now times that by ten, the only thing is you can't sleep to make the monster go away. I don't want to sleep because I am not tired in that way, I am fatigued. My muscles are tired and they don't want to listen to my mind they just want to be lazy. Think of the laziest you have ever felt and live with it every minute of every day. Imagine that lazy, tired, fatigue, it not only messes with your body but it messes with your head too. It is very hard work being fatigued/weak all the time. My body is constantly sending messages to my brain to either stop doing what I am doing or just don't do it at all. If my arms are weak my mind it being told every second, don't do anything! I realized when I was at the Michigan vs Notre Dame game that I was weak and a true indicator for me is my right eye. When I get weak and fatigued my right eye droops. If I do too much or get hot or whatever I can feel that eye just fall down. When I look at the pictures from that day I can see what kind of day it was. No one else would have a clue by looking at me. I look great, as I hear all the time. I think, if you only knew. I was tired. my hip, ankle, fingers ache, I am weak, and was wondering the whole day how I was ever going to make it through this. I did! Somehow someway but I did!
It is hard to watch others live a life you want to live, but can't. Then when you do decide to take the plunge and have a day like everyone else it takes all your energy to pretend you are fine and the whole next week to recover. Seriously! Twelve hours of sleep for a few nights and just sitting around more than usual during the day because you are so physically tired. But sometimes you just have to do it and be normal. I was normal Saturday and now I am paying for it, certainly it WAS all worth it! I was able to spend the day with the people I love and that always makes the recovery worth it!
So the next time you are fatigued think about it and realize it could be so much worse than it really is. Of course all of my chronically ill friends know just what this post means. They live it everyday just as I do.
May God Bless You All!!