With Christmas almost upon us, many of us with Myasthenia Gravis will be wondering how do we get through all the festivities while still protecting ourselves? How do we make sure we don’t miss out, yet avoid pushing ourselves over a cliff? How do we enjoy and remain a part of Christmas?
That’s what we want to talk about today. How do you stay relevant and get the most out of Christmas?
Before I get into the physical part of Christmas as it relates to Myasthenia Gravis, I want to first talk about the spiritual side of Christmas. No matter where you are in your journey with MG, you can still experience the joy and excitement of Jesus’ birth. That story never gets old and will always bring peace to those who ponder it. So, that’s your first step. Ponder Christmas and enjoy the Christmas Story for what it really means, the birth of our Lord and Savior.
The physical aspect of Christmas will be different for each of us. Although many of us with MG share common symptoms, the intensity and triggers for those symptoms can be quite different. Because of that, we have to be aware of what our body is telling us and make accommodations to protect ourselves.
For example, I’ve learned if I’m talking with people in a noisy environment like a Christmas gathering, my voice will become hoarse quite quickly as I have to try to speak louder to be heard. Managing this is rather simple, I just keep my mouth shut and contribute to the conversation only when I have something worthwhile to contribute. In other words, I avoid chit-chat. You’ll be amazed at how much you can still participate as a listener and how much you’ll learn about others.
Let me give you another example. You’ve been invited to attend a Christmas party. You know this will require getting all gussied up, driving to the event, and spending time on your feet talking to others. You know this will trigger your symptoms and lead to fatigue. So, do you just avoid it altogether or do you go and take the chance of people watching you deteriorate in front of them? Not an easy decision, is it?
For me, I know that I sometimes need to push myself out of my comfort zone. I don’t necessarily enjoy these types of events, but I realize some are necessary to attend. It would be so much easier to sit in my comfy chair at home watching tv and allowing the revelers to party on their own, but isolation is never part of the therapy for MG patients. We need contact with others. That’s why I have to force myself to go to these things, but I do so with a mindset of protection.
When I need to attend parties, I know I’m going to get fatigued. Let’s face it, when you’re at one of these parties you’re acting a role. You’re trying to portray yourself as the best YOU that you can be and that takes energy. To prevent melting down in front of everyone when MG symptoms kick in, I make a plan to remain at the party for only as long as I feel up to it. When I feel the meltdown coming, I know it’s time to go. I attended, I made an appearance and I think everyone would appreciate me bowing out on a high note. MG meltdowns are not fun to watch and people who witness it for the first time may wonder if you’re having a stroke or what’s wrong with you. I try not to ruin their fun by bowing out before that happens.
It’s much easier when I’m celebrating with my family. They understand and do everything they can to help accommodate me. They realize when I get hoarse, I tend to just listen. They know when physical activity becomes too much, I have to get off my legs. They realize my afternoon nap may help me be able to enjoy more of my evening. They realize, and often are the first to point out, that maybe I need to take it easy.
So, that’s what works for me. I know I would become a Scrooge if I didn’t push myself a little at Christmas. I know that sitting in a chair watching Christmas happening all around me isn’t enough. I need to participate. I need to feel the things that make Christmas such a special time of the year.
I encourage you to push yourself this Christmas. Make yourself attend things, do things, be part of celebrations. Most importantly, take some time to reread and ponder the Christmas Story. That story alone will fill you with the joy of Christmas spirit. Christmas is also a time to enjoy family and friends. You can’t really do that if you don’t allow yourself to be around them. At the same time, know your limits, protect yourself, and don’t be afraid to do what you need to do to take care of yourself.
It’s a balancing act, but with sound planning and listening to your body, you can handle both. You can’t really enjoy Christmas if you refuse to be a part of it, so put on your ugliest Christmas sweater and go have some fun.