March is Multiple Sclerosis awareness month.
I’m definitely aware of it now. I completely over did it this week. 5 hr drives Monday and Wednesday. Hiking, gym, and hot tub on Tuesday. I tried to eat well, but I couldn’t as well as usual, and didn’t drink enough water. Today I’m too tired to do much of anything. It is usually my grocery shopping day, and I just don’t have the energy.
The weird thing about the “Awareness” is, I don’t even know what people should do. Breast cancer awareness, ok, you look for lumps and family history. A lot of the awareness stuff is pay attention. But MS? Are you normal, only more so? I mean, do you trip and fall? Well, how often? How badly? Are you ever fatigued? Are you more fatigued than other people, whose body you are not in? Is your normal different than everyone else?How do you know? If you answered yes to anything, you might have a disease, or you might be normal.
Let me say this then…MS is invisible. I look normal. It is a stupid disease that makes me feel like a fraud.
Most the time, I’m fine. I will get dressed up in sky high heels and a skirt and do my make up to go out for dinner with my husband, often. And, other times, I will be in yoga pants, because everything else hurts to wear. I will be in hiking boots, because they keep my foot from dragging when I walk.
Sometimes, I can be in the gym for 2 hours straight. Other times, I need my cane to walk into the grocery store.
I managed to graduate college while unknowingly having this, but, I can’t put together sentences other times. Simple ones. I point a lot.
Sometimes just regular life is too much. If you try to talk to me, while i’m cooking, while i have the music on, while the kids are playing a video game, while the dishwasher and washing machine are running, while the dog is barking, I will pretty much shut down. Want to see me unable to form a sentence? That’s a good time to try to make me.
Sometimes, I have to tell my husband his arm around my shoulders is too much, it hurts too much, can he please stop trying to touch me?
I know going to the comedy club (or, well, anything that ends in “club”) is going to be too much for me. So, my best friend no, every time she invites me out, and feel guilty, because I am fine with my regular day.
It means turning down a girl’s weekend in Vegas, because, I don’t really know the other 3 girls going, and I don’t want to spoil everyone else’s fun by walking slow, by falling over, by needing a nap. I know my best friend would be understanding, but, it wouldn’t be fair to everyone else.
At the risk of TMI, I go numb, a lot. Especially my left side. It isn’t really even a big deal to me anymore, I’m used to it. But, it is really hard to tell your husband “I love you, I love being with you, I will, but, tonight, I won’t be able to feel sex.”
I am so randomly good, then bad, that I don’t want to tell people anything. I don’t want to explain why I am well enough to do *this* thing that I want, but not well enough to do *that* thing, that they want. That is where the feeling like a fraud comes in. Last week, I walked around the giant mall with the kids, we we went to look at some cars for fun, I cleaned the house, I did Zumba, I was on my feet all day. We put the kids to bed. Brad wanted to go to the store, for a couple things. I told him I wanted to go with him, but I had crashed. Every step I took felt like I had cement blocks tied to my shoes. I could only go if he’d push me around in a wheel chair. If not, I needed to sleep and we’d go in the morning.
Yesterday, I needed my cane. But, the dog doesn’t walk well with my cane. We had to pack to leave the hotel, and she was going nuts and pulling, etc. So, I had my cane when we went to breakfast, but, knowing Trixie would end up hurting me and pulling me off balance later, I walked without it. I CAN walk without it.I really can. But, I stumble, and I lose my balance (on the bad days) So, breakfast, I need a cane. an hour later, I’m walking a pit bull and loading my car up, with luggage, without a cane.
None of these are even complaints, it is what it is, and I know it and deal with it. This is my life, and looks can be deceiving. But, I’m telling you all this because I have heard “why can you do *this* but not *that*?” I’ve seen the little woman, climb out of the big truck, in the handicapped space at the store and heard “Don’t look handicapped to me.”, I’ve made fun of the people (in my head) cruising for the closest space at the gym, and now I understand. walking is exhausting, but, the modified gym classes, or the pool are ok. If you save your energy for them.
So, just be aware, not all disabilities are obvious.
I read somewhere it takes someone with MS 5 times more energy to do something, than it does someone without. So, yes, I was awesome, until about 1pm. And, then I used up all my energy for the day. But, somedays I will do better.