I am both fortunate and cursed by being able to function almost normally despite my mystery ailment. (PA+ACD?, PA+something else? Something else entirely? No one knows.)
I am a largely self-reliant person. I know there is no one but me to work, pay bills, mow the lawn, do laundry, etcetera. It gives me the drive I need to get up and do those things despite how I feel physically.
It also means that my level of illness can be overlooked. When I mentioned that I might, finally, be getting an iron infusion to my friends, suddenly the response was, “wow, that’s serious”. One person, who had wanted my help packing for a move, told me to take it easy and that I didn’t need to help after hearing my news about an upcoming infusion. It was almost laughable to me. I function through my fatigue on a daily basis. The prospect of getting one of the causes of my fatigue treated does not make me suddenly an invalid. I can still do the same things today that I was able to do yesterday. The point is that I live in a state of having to prioritize what I do everyday, because I am too chronically fatigued to get as many things done as a healthy person can manage.
Since I need a place to live and food to eat, work ranks very high on my priority list. Clean laundry is needed for work, so that’s next. Clean dishes are pretty important too. (I have a limited number, so I have to wash them or I’d run out.) I try to keep the front lawn mowed for the sake of the neighbors. The backyard is less important. The things that always end up at the bottom of the priorities list are the fun things, such as going out, meeting people, and trying new things. I live the bare minimum of a functional day-to-day existence.
Yet I’m still grateful that I’m able to do this much. There are so many people who are so fatigued that they can’t even get out of bed. My fatigue rarely gets that bad, so I’m lucky.
But I’m also unlucky, because having no definitive diagnosis and generally “normal” test results gets me labeled as a hypochondriac by most doctors. They throw up their hands and tell me there is nothing they can do to help. The fact that I’m high functioning almost works against me because, if I were truly ill, I wouldn’t be able to get anything done. The fact that I do normal things, like work and shop, gives the impression that there is nothing wrong. Short of walking around with a sign that says “I am fatigued”, no casual observer would know.
And then there’s the challenge of explaining fatigue to people who’ve never experienced it. For years I had a coworker, who had no clue what fatigue was like, try to tell me I could just snap out of it if I wanted to. She failed to grasp that I was already employing mind over matter just to make it to work everyday. Her attitude only changed when she personally experienced some fatigue herself.
While I generally don’t wish my experience on anyone, it often seems like the only way to convince doubting doctors, and others, that it isn’t all in my mind is for them to go through something similar (complete with their own experience of doubting doctors/friends/relatives/coworkers) to make them realize it is even possible to live this way.
I’m not entirely sick or entirely well. I’m a little of both. Some days it’s more of one than the other. I hope that an iron infusion will make me feel better. There are good reasons to choose an iron infusion over an injection (less painful, less risk of a permanent mark or cancer at the injection site). Otherwise they are pretty much the same. I had an iron injection a couple of years ago and it seemed to help, so I am optimistic about getting more iron regardless of the method. Right now I don’t even know when it might happen. Until then I’ll keep functioning the best I can.