Hugs are a good thing, aren’t they? They’re generally something people want. Getting a hug from someone can make you feel many things. Love. Happiness. Comfort. Support. Excitement. A hug provides us with a sense that someone wants to convey something deep and meaningful to us, even if for a moment. Who doesn’t like a good hug, especially when it’s from someone we love? Who in their right mind wouldn’t want to feel that connection, that sense of affection or encouragement? Bring on the hugs!
Well I’m here to tell you, “hugs” aren’t always a good thing. Confession time: I have multiple sclerosis, or MS. Specifically, I have relapsing-remitting MS, which means that I may look just super-dee-duper to you, but I experience a wide array of neurological symptoms that range from mildly annoying, to “whoa, what the hell was THAT?” Numbness, tingling, burning sensations in my extremities—check. Fatigue that makes me want to lie down on the floor and let the dogs walk on top of me—check. Migraines secondary to said fatigue—check. But the one symptom that absolutely will stop me in my tracks, and at times wakes me up in the middle of the night (like last night) is something called the MS Hug. Physiologically speaking, this is how the medical world explains this phenomenon. But I’m here to tell you, they can kiss my…well, you get the point.
First off, who in the world decided to use the word “hug” to describe this thing? Given the positive feelings most associate with that word, the person who decided to call it a hug, in this instance, is a douchenozzle (my new, favorite put-down word). This ain’t no “hug”—it’s not that friendly. It can vary from a nagging annoyance, to something that has me grabbing my boob to counter the internal pressure (which may work for some people who see me do this, but whatever), to at times taking my breath away. And the medical description given of feeling like what I imagine a heart attack may feel like is spot on. The first few times I felt it were bad enough to land me in the emergency room, checking for cardiac issues. “I’m sorry, ma’am, you’re fine. And this ‘hug’ you talk about? We’ve never heard of it.” Which of course implies that the nurse and doctor thought I was making it up. Fun.
Second, and here’s the kicker—there is nothing to be done about it. I’ve been told by varying docs to take more drugs, use a warm compress, wear a girdle, stand on one leg and bark like a dog. All oh-so-helpful and desirable, say, in the middle of a work day. So I have been known to sit in meetings, holding my boob, and letting people know that I’m not having a heart attack. “Really, please continue with the death-by-Powerpoint presentation you have there. I’m good.”
Why in the world am I ranting about this? Well, because I can. Because I can’t make this darned thing go away, and since it’s all I can think about at times, why not write it down? I know other people with MS experience it (although not all), and when I mention it to them, their reaction is generally“Oh man, I get that TOO! I thought I was losing my mind!” It’s comforting (and not in a hug kind of way) to know you aren’t having a psychotic break, feeling like you’re being felt up by the devil himself. Makes for great cocktail party fodder though. “Don’t mind me. I’m clutching my chest, but I’m sure this stuffed mushroom over here will make it all go away.” Kind of fun to freak people out, but ultimately I’d trade it for a great glass of wine instead.
Maybe I’ll open a bottle to breathe, for later of course. It’s 5 o’clock somewhere, right?
Hi DeeDee!
I’ve just been diagnosed with ms too. What are your treatments? How do you deal with this diagnosis? It does explain a lot of my crazy symptoms. Help!
Hi Jennifer! I was dx’d in ’98, so overall I am very lucky in terms of my symptoms and daily life. I am on Copaxone, and have been for more than a decade. That is the one that I tolerated best. Dealing with the dx for me was like anything else in life when it throws you a curve ball–deal with it as best possible, and try to remain positive (and have a sense of humor) when you can. But I admit that I’ve had plenty of days when I just want to feel “normal” again. It’s a tricky disease, and I never know which symptom is going to want to get in the game on any particular day. And the symptoms are different for each person, and tend to evolve over time (in my experience, anyway). Finding others who are going through it helps immensely.
Hope your journey is one with a balance of treatment, support, and humor. :o)
LOVING YOUR BLOG BUT, HATING YOUR HUG! WISH I COULD CHEERS WITH YOU!