4th of July. Most people are out at picnics or grilling, playing bocce ball and bags, maybe laying out in the sun or at least enjoying fireworks.
Then there are the chronically sick... the ones who look normal but aren't. We think back to the days we used to plan a full day and enjoy every bit of it. We think back to eating whatever was at the picnic without thinking twice about it. We think back to playing bocce ball, bags, softball, going for a run or a swim. We think back to those days filled with smiles, family and friends. And then we get sad, because that life we used to live is gone.
Yesterday I got caught up in this. Who would have thought 4th of July of all holidays would be the one to get me down, but it did. Thinking back not only to my old life of good health, but my old life of having been married. Don't get me wrong, I certainly don't want that person back after he left me for another, but sometimes it still makes me sad... there is no way to erase the past. Being divorced will now always be a part of me. I don't like that one bit. Once you get off on a bad thought it spirals around to a bunch more of those bad thoughts.
In the past, my 4th of July would consist of a parade in the morning and an all day picnic after. Since being sick, I don't go to the picnic anymore. I can't be out in the heat all day nor do I want to risk being right in the middle of tick-ville. The past 2 years I still went to the parade in the morning. This year I didn't plan to do that for multiple reasons, one being that mornings are very hard for me.
I woke up yesterday, the 4th, feeling sad. How could I not do anything at all for the first time in my life? I refused to let that happen. So I rushed to get ready and went to the parade with my mom. I brought an umbrella to block the sun, yet it still felt pretty warm. If I would have just stayed in after that, I probably would have been ok. But no, I was stubborn.
Again I got sad, thinking about everyone else out and about and me sitting inside by myself. So what did I do? Something I should not have. I went to a second parade. Little did I know this parade was much larger and parking was much further. Also being later in the day, it was hotter. Too hot, and too far of a walk. I should have left as soon as I realized any one of those things but I didn't. I wanted to be normal, or at least pretend to be for a day. So I found a spot and sat through another parade. Again I had the umbrella, but that heat was just too much.
Today I woke up sad again, but for a different reason. I knew immediately there was no way I was making it to church. My back, arms, chest and core was all very weak. This means my breathing/diaphragm is at risk of slowing down or stopping on me. I remembered the last time my MG flared up due to heat I spent 6 weeks in a hospital. So I knew I had to rest and do nothing today to try to prevent that.
You see, there are 3 main things that make Myasthenia Gravis worse: exercise/repeated use of a muscle, stress and heat. I don't really know why it happens but heat affects the muscle as if you were working out, and working out is something most with MG cannot do. Heat can quickly make you go from walking, talking and feeling decent to a trip to the hospital with emergency treatment for breathing crisis. Heat means anything over like 70some degrees. Heat means any length of time. Heat means in the sun or blocking the sun. Heat can even mean being indoors when it's not cool enough with air circulating.
These are the things people don't quite understand. I mean they really don't make much sense so how could people understand them. But it's important. I wish there was a community for all chronically sick people to live in. So we could have our own little indoor air conditioned, quiet, lay on the couch, lots of water available- party. But there is no such thing. So I have to accept that I am different and I have to live differently, which often means missing out on many things.
But I'll let this be a lesson to me. By putting my earthly desires first, I missed out on what truly is first in my life- going to church, God. And that's what I have to remember. Every time I have to miss an event... Every time someone makes me feel bad that I'm not working in the traditional sense... Every time I'm reminded of all the things I can't do... I will think about what comes first: God. I am here for Him. Not for earthly desires, not to please others, not to be molded into who others want me to be. But to be molded into who He wants me to be. And if that just means studying His word, reading, writing, researching and conversing with others online, so be it. It's enough if God says so. Maybe He's preparing me for something much greater. And maybe not. But, it's really not about me. And it took the heat and an MG flare to bring that back into focus.
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