Just a thought

Over the past few days I've realized something and wanted to share. When people come over that are not directly a visit for me, I tend to hide out. The reason for this is not to avoid anyone but because of how my body tolerates everything. If you've read my blog, you know stress makes MG worse. What people don't think about though is that stress can be both good or bad and ways that you tend not to think of stress... perhaps we should replace the word stress, but I don't know what would be an appropriate word to replace it. So let's just talk by example...

Example: Someone who is very high energy. Why do I hide out? Because it drains me. I can't really control this, I could tune them out but that wouldn't be very nice. I don't understand it or know why it happens but it does. There are days I need people to talk slower (even though sometimes I talk a billion words a minute). There are times I can't tolerate sensory things- too many lights, sounds, motions, etc. that most people don't at all notice all seem to fly at my brain at once and it's too much to handle. Whether or not the sensory thing is an MG thing or not I don't know, but it makes my MG worse.

Example: Someone I've never met before. Why do I hide out? Because meeting someone new is slightly stressful sometimes in general, but then I have the added part that they may or may not know I have MG and even if they know they may not know what that means or how it affects me. I either let them think I'm disinterested even though I'm just tired and/or weak and not bring up the MG, or I bring it up and feel like I'm talking too much about myself and/or answer a ton of questions. Whereas someone you already have a solid relationship is mainly comforting, getting to know someone takes effort and that sometimes is enough to make me feel weak.

Example: Anyone but I'm already having a weak day. Why do I hide out? Because even talking is difficult when I'm feeling weak. Focusing is an effort. Walking or standing isn't easy. Again you typically can't see all of that but it's happening inside me.

On top of the MG, around people I don't know I am quiet in general. Though once I get to know you and feel comfortable around you, watch out if I have the energy! haha

So what's a good solution? Well I have yet to have a definite answer on that. I've found it's easier when people understand the situation, if they've read about it or myself or someone else explained it to them. My mom always says, if you need to go lay down or go in another room do it, they will understand. My issue is I hate walking out on someone so if I'm already there I might stay and then be really weak after the fact, or if I'm not there and don't need to be there I might not go there. So if I stay you will probably notice I start fading out. It's not because I don't care or don't want to listen or hang out, but because my body is going downhill and I need to use my energy for what's necessary as opposed to conversing. But I'm trying to find a balance of being able to hang out/converse/visit with others even on weak days while not overdoing it. This is another reason I love emailing/chatting online. Getting to know people or catching up with people from the comfort of wherever I want to sit or lie down, no talking needed.

My hope is that either surgery or medicine or a miracle will put me in remission so that I can do everything without these concerns. But until then, know that if I'm not around a lot, leave or just sit there and don't talk that it's probably not anything to do with you but because I just can't at the moment. Don't take it personally. If you find out a way to telepathically communicate and thus retain my energy, let me know :)