March is Multiple Sclerosis Awareness month. I have no idea what that really means, I think most people know it exists. But, nobody seems to know what it means, including the doctors. What do I know? That it isn’t gonna kill me, and falling down a lot is normal for me. Other than that, I’m out of knowledge.
I thought about putting something like this on my Facebook page. I bought a couple awareness bracelets. I have an arm full of bracelets on, I don’t think anyone will notice one more.
You wanna know something stupid? I will tell pretty much any stranger I meet. I feel like having the disease is easier than it being assumed I am lazy or drunk. Because, I’m pretty sure I seem drunk a huge portion of the time. It’s easier than seeming stupid because I can’t remember the words I know, and it makes me cry. Brad mentioned it on his podcast, and only strangers listen, and I had no problem.
But, I won’t tell people I know. Brad knows, obviously. My best friend knows. The people I had to rely on to babysit while I was in the hospital know. Haven’t told anyone in my family. Haven’t mentioned it to any other friends. Haven’t told any of the people I see on the time. There are a couple random people who know, but I already wish I hadn’t told them.
People you know want to get too involved, while not actually caring. Strangers are curious. Family wants to give lectures about how you shouldn’t be doing *this* but, get irritated when you say coming to Christmas is too stressful and will cause a flare up. Family wants to tell you how you brought this all on yourself, by doing *whatever*. I think you expect to get a certain amount of support from people you know. There is no expectation with people you do’t.
Every time I see my ex-mother in law she asks if I am better yet. I am not going to get “better”. And, when I say I’m doing ok, she says “You must be, you look great.” I don’t tell her, I woke up feeling like I had run a marathon. Or that I made a really nice lunch, and when I went to serve it, realized I didn’t turn on the slow cooker and it’s still frozen. That when I got upset with Brad, I fell over. I lit a paper towel on fire on the gas stove, and couldn’t even manage to care. I didn’t realize that connection was fried. I knew I should care. I just didn’t. Because, if I tell her that, she’ll say “but you look so good!” or “well, it’s probably your diet, if you just do these 3 things you can cure it.” or worse…she could encourage her asshole son to take me back to court and argue it’s dangerous for me to have the boys. So, she asks, and I lie and say I feel great, and I smile and remind the boys to put on their shoes, while Brad holds onto me. He looks loving and caring, and we don’t tell anyone it is so I don’t fall down the stairs, or into the china cabinet.
The woman at the dentist though? The one who read my chart and saw the meds I’m on? She asked. She said I looked great, and I didn’t mind explaining that I am glad I look great, because I don’t feel lit. She asked if she could ask questions. She asked me how I knew, and how I got diagnosed, and what now? She said a man at her church was recently diagnosed, and what should she do? What should she say? How would I want to be helped? That was really nice.
So, be aware, this exists. It’s a weird disease and there is no normal. What I say probably won’t match what someone else says. For example, going blind for awhile is ridiculously common (I am not sure, but I think somewhere in the 70% range). Vertigo only affects, like, 8% of people. My eyes are great. My vertigo was one of the first signs, it was horrible, and it comes back as a warning I need to chill. There is no cure. It isn’t fatal. It seems to be more of an annoying disease than anything. At least in my case.