Here's something for you-
I'm not as strong as I appear on Facebook.
Most days I push, and push, and push. I never allow myself to be sick, or tired and I never blame anything on my MS. I wear the MS t-shirts. Ra ra ra, let's cure it, push harder, we're MS champions, Facebook memes and run the races, MS Fitness Challenge and...oh my word just announcing you have a disease is exhausting.
I want to go to bed. I want to be selfish.
Every morning I take a drug called Nuvigil. It's for people who have chronic fatigue. That's me. I fall asleep working, driving, talking, going to the bathroom... It's embarrassing. I'm embarrassed by it. I bring my coloring books over to friend's houses so I'm stimulated enough to carry on conversation.
But I'll be honest with you. Some days? I just don't want to take it. Some days, I just want to lay down and take the nap that my body is asking me for. I ask my husband, "I wonder how long I'd actually sleep if I'd sleep as long as my body wants me to sleep." (How much wood would a woodchuck chuck...)
Some days, I just want to be sick. Some days, I want to call in and say "I can't today. I have MS. I'm also having my period now, so it's about double in intensity. I'm slurring sentences and forgetting words. I'm not wearing my sneakers because I took them off and forgot where I put them. 10 minutes after taking them off. I drop footed twice today, and it makes me feel unsteady, so I'd rather lay in bed. Is that okay?"
When you are first diagnosed with a disease, everyone jumps on your disease bus. I may have said this before, but it's true. There are meals delivered. People offer to take you to appointments and babysit your kid and clean your house and... and then it stops. Just like a new baby. Three years into it, and people have already forgotten. It becomes part of the scenery of your life.
I've been asked to participate in wedding planning for a relative who is getting married in the Spring. She has a long laundry list of things I'm supposed to do. I told her honestly, I cannot do all that. She informed me it wasn't that much. I wanted to remind her- I have MS. Getting up and coming to your wedding and arriving with my family looking presentable is "that much." But I don't say it.
I went to the grocery store with our son. He was being three. He was excited to be at the grocery store. He was upsetting me. I broke down. "Liam, the grocery store makes mommy's MS get VERY BAD. So I NEED YOU TO LISTEN TO ME NOW." People turned and looked and then walked on. (She doesn't LOOK sick...)
We are plugged with all the hoopla of "Own the disease! Don't let it own you!" Yeah, shut up. Today I don't mind the title.
If you need me, I'll be asleep on the potty.