Monday, June 6, 2011
This weekend we experienced my first full body shut down. Admittedly, it could’ve been much worse, but being our first experience it shook us all up a bit. I did way too much. I overdid it. Ignoring Charles’ repeated warnings, I just never stopped all day. The igniting factor was a 7am call of nature that led to a negative pregnancy test. The adrenaline rush made it impossible to go back to sleep, so I just ground my emotions down into a gritty little dust and listened to my logical side, put on a smile, and got to work, thinking, “Fine, I’ll show you!”
First of all, you have to understand that this disease has made it close to impossible for me to do even the most basic of household chores. Secondly, you have to understand that I am stubborn. And not just a little stubborn ……
Adrenaline is a wonderful drug. I was a machine from 7 am on. We were going to the pool with my sister friend Jasmine and her family, and I was going to make this an absolutely perfect day for everyone. I let Charles sleep in, cleaned the kitchen, fed the girls, even shaved my legs! I got all the food, towels, toys, swimmy diapers, regular diapers, wipes, shoes, cover-ups, snacks, hand sanitizer, sunscreen, swimsuits, hats, and the kitchen sink packed, I got the girls into their suits and into the car in record time and we took off. I played the perfect little hostess, introducing Jasmine to my friend who had let us use her neighborhood pool. I made sure everyone had water, everyone was comfortable, I ran around taking pictures, offering snacks, laughing at jokes, does everyone have a towel? Sunglasses? Are you having the best time ever? Do you need any sunscreen? Can I put it on your back for you? Did you see this part of the pool? Are you too cold? Too hot? Let me stand over you to create some shade, let me dry you off, let me create a float for you from this piece of paper, let me fry you an egg on my tummy, let me cut out my heart and give it to you on a silver platter. The adrenaline was working. Everyone was having a blast as I continued to promise Charles I’d sit down to rest “in just a minute.”
I finally sat down in the kiddie pool as Jasmine and I watched our little girls play. My right knee had been spasming most of the day. For me, that’s like the warning blast that sounds just before a submarine is blown to bits by a torpedo. I didn’t listen. I kept moving, going, entertaining, so my body issued a second warning, one that no one could ignore. My whole body went into spasms and I was haunted by Charles’ voice begging me to, “please sit down and rest.” Jasmine and Tanger ushered me to a chair, my gait that of a late stage Parkinson’s patient. I was embarrassed and scared, both emotions brought on the sobs that made the spasms worse. It was definitely one of my lowest points so far.
So I’m beginning to accept that I’ve entered this alternate universe where my poor sweet husband has become my butler, my chef, my maid, my nurse and my nanny (fun for only the first few days, after that I just felt guilty.) Where on a bad day I may have to crawl to get to the bathroom, where it’s hard to text, type or pluck my chin hairs because my hands are shaking so badly, where each day that I make it through without peeing my pants is celebrated, as is each BM – I know, I know, too much info. In this universe I have to take over 50 pills a day, I am drinking liquid iron and cod liver oil (gag me with a spoon!) I live in my pj’s, have my 2 yr old correct me when I call a microphone a motorcycle, and walk as if I'm three sheets to the wind.
But there are good days too, even good moments on the bad days. I am learning to appreciate each and every single one. Celebrating the days I can walk instead of crawl, when I can make my own breakfast and coffee, when I can carry Finley to her bed. These days are wonderful. These days fill me with hope and joy. But most of all they make me even more determined to fight this disease. To get well, to no longer be this shell of who I used to be, and to one day race my kids to the top of a hill, or in a more likely scenario, to take them to the mall and be able keep up with them as we race from one store to the next. J