I think a lot of people see us and think: They look so young, and so healthy. They don’t look sick at all.
Well, you most likely have seen us on a good day. When you see us we are feeling good enough to be seen in public. No, we aren’t healthy. We are still sick, it’s just that some days you have things to do, but you wait for those things until you feel like going out.
But, you don’t see us when we lay there, not being able to do anything. The only thing you have enough power to do is breath. That is almost everything you do in a day, lay around, breathing waiting for the energy that never comes. This is the life of a lot of us, a life bound to stay not too far off from the comfort of your own bed.
And you know, the night arrives, and people think: If they are so sick, then they must sleep a lot. Trust me when I say this: We don’t. We all would just love to sleep, but in the end we can’t.
I have been having trouble falling asleep for years, of course when it goes too long without real sleep you have that one night where you just feel like you can sleep for ever, and for that one day, I could fall asleep silently and without using hours to do so.
But for most of the time, I could use hours to fall asleep. I could lay there, listening to the silent sound of my music in the background for hours. I have a goal to always get up before 9 o’clock. And I have stuck to that for a while now, and even if I fall asleep at 3 or 4 in the morning, I try and wake up at 9.
This has become easier, because I have started to use Melatonin, and since starting with that, I have been able to fall asleep faster. But don’t let that fool you.
Having ME is like going to sleep, but when you wake up the charging of the body hasn’t gone right. I might even feel more tired when I wake up that I was when I fell asleep. Some days I can use days to just start functioning again.
You know, I love to read, but on the days where I am so tired, not even my favorite activity is tempting. I can look over to a book, and wanting to picking it up, but not have the energy to focus on what is says.
Some days I am just laying there, thinking and hoping for a better day tomorrow. And I don’t know what the next day will bring. But you never see us like this. You never see us when we lay here, hoping for a better day tomorrow. You see us on that better day, when you have to go somewhere because of something. So don’t you dare judge us on our good days, because there aren’t many of them. And for some of us, the better days aren’t getting more of, they are very rare.