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Not a whole lot of people can understand when you say, "I'm tired," what you really mean is you’re exhausted. You are too tired to stand for one more minute, your arms are too tired to hold a book up, and all you can do is stare at something because you're too tired to lie down. They won't understand that walking from the car to the house wears you out to the point you need to take a breather. Even though it seems like you barely did anything, you need to sit down on the couch and regain your strength. And most of all they don't understand when you say, "I'm tired," you mean tired of pretending to be okay to make other people feel more comfortable around you and tired of not having anyone understand what you’re going through.
They won't understand why you're going to bed at 6PM, not because you want to, but you need to. You need that much time to walk to your bedroom, to brush your teeth, to change into your pajamas. Half the time you're too tired from the day’s activities, you just sleep in your clothes. They won't understand you need the time to complete your physical therapy exercises; not to make you stronger, but to hopefully maintain the strength you do have. They won’t understand after you complete the exercises, you need the time to stretch so you can wake up and get yourself out of bed in the morning. They won't understand when you're going to bed at 6PM, it’s really 10PM before you can begin to even think about sleeping.
I wrote the above two paragraphs several months ago, before I ever thought about sharing my thoughts and feelings about living with Spinal Muscular Atrophy with the entire world. I feel lately I have been more tired than I have ever been in my life. I can't stay focused on something for a long period of time. All I want to do by the time I get home from work is go to sleep.
I have responsibilities I need to take care of. I am going to school and I need to be able to focus on my school work. I need to be able to cook for myself so I can eat and not make myself weaker than I already am. Or even worse, give myself a bad headache I can’t recover from for a few days. I need to do chores around my house. I can’t sleep as soon as I get home from work and just get up and go to work again the next day. That is not living.
It took me awhile to understand where this sudden, overwhelming exhaustion was coming from. My muscles are having to work twice as hard as someone without a muscle disease in order to get through the day. Of course I am tired! Not only am I working twice as hard, but I find a lot of the time I am putting in extra effort than what is needed. This is because I feel like I need to prove myself. If I am going to open up about having a muscle disease in a work environment, I start feeling like my coworkers will start to question whether or not I am good enough. Not only am I extending my efforts to prove myself to everyone, but the tremendous pressure I put on myself to succeed is also wearing me down. Constantly thinking I need to give extra effort and bringing the extra effort to the table is exhausting! No wonder I am tired all the time!
Unfortunately, several other people with chronic medical conditions feel the same way I do about needing to prove ourselves. This is exhausting, on top of the fatigue we are already feeling from our condition. It’s important to understand that when someone says, “I’m tired,” they most likely are feeling more than just tired.