But tired doesn’t really even begin to describe the life of someone with chronic fatigue. But who knows if I really have chronic fatigue — that is a diagnosis that is given when they have ruled other things out — or in other words they don’t know what else to test for and so you get thrown in a category like “chronic fatigue” and most of the time I feel like doctors look at me like it is all in my head. Fatigue – sounds vague. I don’t think people can understand just what I am talking about unless they have experienced themselves or know someone very well who has lived it.
If chronic fatigue is what I have then here is my attempt to describe it. Tiredness so deep that you feel it through your whole body. Muscles feel like noodles or else they hurt. Hurt for no reason. One of the big signs for me is that I need to slow down is when my words get jumbled up. My kids crack up and I joke with them about it — and then I make a mental note that I need to take a nap or get to bed early … soon. If I don’t get some rest, soon my brain stops working. I can’t remember things that occurred a little bit ago, I have great difficulty answering questions and I am not a safe driver. Not a pretty picture.
The good news is that I am doing better than I have in a while. I used to not be able to make it up the stairs if I went down. Now I go up and down the stairs multiple times per day. That is an accomplishment. But not really anything I can brag about to anyone besides those who have lived with me and seen me at the worst moments.
I have had something come up in my life recently where I am quite anxious about something that is several months away. It is a large event and will take lots of planning. I am not worried about the planning part. It is the actual week-long event. How the heck am I going to do it? I told the organizers that I really didn’t think I would be able to do it but they smiled and said, “I’m sure we can work something out.” Well, they really have no idea what my needs are. Sure they say I can go take a nap when I need to — but I am sharing a room with other people. The likelihood of no one needing to come in the room while I need a nap is small. The likelihood of me being able to fall asleep somewhere besides my house or somewhere silent is remote.
I feel like my privacy is going to go out the window in this process. I will be working with a committee of people. (Here is where the title comes in…) What do I do, meet the committee and say, “Hi my name is Connie and I am tired all the time … so don’t expect to see me much. I will do the best I can but don’t count on me for anything. Just plan on me as bonus when I’m here.” Sounds great! I work so hard to schedule my life so that people don’t know that I need a nap every day — and I mean every day. But this is going to put it out to the world. I guess I am doing that right now — but it feels different because I don’t really know that anyone will read this. This is step A of revealing the tired part of me. Step B will be trying to let people know before the event and Step C will be the actual event.
Fatigue used to be the worst of it — until a few years ago when migraines came into the picture. Not that is a scary site — a chronically fatigued Connie with migraines. But that is for a different story.
Anyone else have this experience — with chronic fatigue or some other chronic health problem? Where people just don’t seem to get it? I would love to hear from you. Please leave a comment below.