For years I lived with what I call blacking out without ever realizing (1) not all doctors knew what I meant when I said that, because (2) it's not exactly normal. I call it blacking out when I completely lose my vision (i.e. everything goes black) but am fully conscious and often am able to continue doing whatever I happen to be doing, just without being able to see. It can take between 30 seconds to 2-3 minutes for my vision to come back after one of my blacking out episodes. At this point, I'm pretty good at working through them and most of the time people probably can't even tell I can't see unless I say something. It often comes when going from lying down to standing or sitting to standing, but it will also happen if I've been standing too long or sometimes what feels like completely randomly. I've been dealing with this for as long as I can remember. Even as a kid. I never said anything because I thought it was normal.
When I first started having symptoms we couldn't explain, it took years and dozen of doctors before we were finally moving in the right direction. I remember the day we first felt like we were being pointed toward what might actually be going on. My mom and I had gone to see my PCP for a follow-up after some sort of testing, that I can't remember. We were still trying to piece things together, and my PCP was great at never discounting my symptoms or assuming I was making things up. He would help us troubleshoot and give us referrals he hoped would help. That appointment I happened to mention that I was blacking out "more than usual" but wasn't sure if that was even worth bringing up. He looked at my mom, then looked back at me and asked how much was more than usual. I told him it used to be 6-8 times a day, but was now over a dozen times a day. Then he asked me what I meant by blacking out. That is when I discovered that what I was experiencing was not actually normal.
But how are we supposed to know what is normal if we've never known what that is?
Recently I had to switch infusion companies because my insurance changed. As is common with these type of transitions, some of my supplies came from different suppliers. I didn't think anything of it until I realized I had done a full shipment's worth of infusions and NOT had any of my "normal" infusion side effects. I was used to experiencing swelling, headaches, itching, muscle aches, and overall malaise during and after running my IV fluids. Even when I've been in the hospital or in the ER, the symptoms were there, so I assumed it was normal and thought nothing of it. I'm living with a rare disease and have 2 feeding tubes and an implanted port, pain and discomfort is a reality when there are foreign objects in my body and I'm alive because of countless medications, an unfortunate reality, but one nonetheless. That means that I'm used to just "sucking it up" and dealing with a certain level of discomfort because that's just life. Except when it's not...
After doing some research and talking with some other people with mast cell disease, it appears that what I was feeling from the IV fluids was not simply side effects but actually a reaction to the brand of plastic used in the bags. My new infusion company uses a different brand which, come to find out, is free of a few specific chemicals that often cause reactions in people with mast cell disease very similar to what I was experiencing. Most of the hospitals use the same brand I had with my previous company, so it didn't matter where I was getting them, I was always reacting. Just the fact that I have discovered that running my infusions does not actually have to mean side effects is amazing! But how was I supposed to know that what I assumed were "normal" side effects were not actually normal at all?
It's tough because I try hard not to complain. I truly believe that everyone is always dealing with something, and right now, my mast cell disease and medical issues are my something. So I do my best to keep a positive attitude and not complain, because if this is what I have to live with, I'm not going to let it drag down my attitude along with my body. But in cases like this it can be frustrating. Maybe if I *had* complained about the "side effects" I always got with IV fluids I might not have had to deal with them for as long.
I didn't speak up about my feeding tube buttons causing bleeding, irritation, and discomfort for months because I assumed I just had to accept it as part of having surgically placed tubes in my stomach and intestines. Come to find out, a simple switch to a different brand of feeding tube meant a slightly different shaped balloon which completely solved the problem. What else do I just deal with because I don't want to complain that might be able to be solved with a simple fix?
Don't worry, I'm not going to all of a sudden start complaining about everything. Even if it did uncover other simple fixes, I don't think living with an attitude focused on what isn't working is how I want to live. I'd rather choose to smile every day even if it has to be through some pain or discomfort.
Although I will say this was an interesting revelation. How often do we blow people off when they appear to be complaining? What if they're not complaining because they want to but because they are trying to calibrate their normal? If we can't ever figure out what is "normal" we could unknowingly suffer silently through things that could have an easy fix.
But like I said earlier, even just knowing that things aren't normal can be hard if we've never known any different. I mean, how was I supposed to know that other families didn't stop everything to shout, "SING ME THE SONG OF YOUR PEOPLE" when the washing machine or dryer plays the tune that indicates the end of a cycle...
What is your normal that really isn't???