This seems to coincide exactly with what the neuromuscular doctor told me to expect with the CoenzymeQ10 supplement: to notice improvement in about two months, with full benefits felt around six months. I've been taking CoQ10 for about three months. After six weeks I noticed the brain fog beginning to lift. My thinking felt clearer, less like I was moving in slow-motion and more like I was witty and ambitious again.
Within another two weeks I began to have short periods of time where I actually felt energetic, like I could wash the dishes and put in a load of laundry without needing a nap and a cup of coffee in between. It would only last an hour or two at first, but the energetic periods slowly became longer and more frequent.
Then I noticed that my legs actually began to feel like a weights had been taken off of them. Have you ever done the little slumber-party game where you stand in a doorway and press the backs of your arms out as hard as you can against the doorway for one minute, then when you step out of the doorway your arms begin to float upward? That's how my legs felt, like I was walking with so little effort now that they almost lifted too high, like the slightest amount of force made them just float upward now. I wondered if I might be able to lay on my back and raise a straight leg upward now, something I had been totally unable to do in December, and to my amazement my leg flew up with hardly any effort at all. I've been galloping through the grocery store lately (OK, not actually galloping, but it feels like it compared to the way I used to drag myself through stores last winter), and running up staircases for the fun of it.
About three weeks ago I noticed another completely foreign feeling: waking up feeling refreshed, like I'd actually had enough sleep, like I wanted to get out of my bed and do things: clean the house, take the kids to the swimming pool, or teach Toby to ride his bike. In fact, I've felt energetic and ambitious long before having that cup of coffee I used to cling to. And, at least in that way, it's been the best summer in a long time.
I got a pool pass for our family this summer, and we've gone now more times than I can count. Hannah apparently can hardly recognize me as her mother. When I told the kids we were going swimming for the second day in a row a few weeks back she gasped with wildly excited eyes, "Swimming again?! You've got to be kidding me!"
-Hannah and Emma learned how to swim
-Naomi has grown to be quite a strong swimmer
-Toby learned to ride a bike
-Elijah has learned to play in the backyard and obey the boundaries I've set up for him
-The girls learned to make rubber band bracelets and set up a busy shop in our backyard where they sell all sorts of rubber band accessories to the neighborhood kids.
-All the kids have made friendships with neighbors
-I took the four older kids bike riding on a nature trail while I attempted to keep up with Elijah in a stroller
-We took a week's vacation to visit my family
-We went to the county fair
-All four kids are on separate soccer teams, which means we have practices and games almost every day of the week.
And I'm actually enjoying it all. It's been really amazing to feel alive again. I remember how much of a struggle it was just to get up and get the kids out the door last year at this time, and how much I loathed any extra activities for that reason. I remember the dismay of knowing that no matter how many hours of sleep I got I would never, ever feel better. I remember the fear that something was seriously wrong with me when my arms and neck began to actually give out on me. And I am so grateful to be on the other side of those feelings.
I still get tired, but it's a much more normal tired, the kind that comes after a long day of activity and disappears after a good night's sleep like it's supposed to. I still struggle with weakness in my arms and neck, but even that is finally improving. Yesterday and today I have begun driving short distances without the help of my neck pillow--yes, holding my own head up against the movements of the van--and I'm able to do it for about five to ten minutes now, which is a great improvement.
All of this adds to the collision of emotions I've had in the last month: so much grief over the new BBS diagnosis, but so much happiness over the return of a good deal of energy and ambition. I've feel like this summer I want to give my kids the best summer they've had yet, to make sure that it is full of happy memories, and I feel that I'm achieving that goal and enjoying doing it, even with all the grief mixed in alongside.
Emma's endocrinologist called me today to tell me that Emma's enlarged thyroid is due to autoimmune thyroid disease, the same as Naomi has, but that her thyroid function actually looked a little better on this last test so she won't be put on medication right now--we'll just have to watch it closely. She also told me that Emma's hormone tests show that Emma's adrenal glands are definitely acting as if they are in puberty and Emma's pituitary is showing borderline high hormones as well--not scary-high levels or treat-it-right-now levels, but "we need to watch this closely" levels. Emma will be having a brain MRI in October to see if there's anything abnormal, such as a cyst in her pituitary gland.
On August 4th I will be taking Naomi and Emma to see a pediatric ophthalmologist to begin the process of assessing the condition of the girls' retinas and watching their degeneration, an appointment I am simultaneously anxious for and dreading.
But today, today they are well. Today they are "healthy." Today is what we have. So you know what I did today? I took the kids to the pool and we had a glorious time. Naomi passed the pool's swim test and got up her courage to jump off the diving board, then decided it was so much fun she jumped off ten more times while we laughed and cheered her on. This is an amazing accomplishment for a girl who three years ago couldn't stand the feeling of any water on her face.
Tonight we went to soccer practice and had a lovely time there as well watching Toby ham it up in front of all his new friends. I'm so glad that I am now able to give this kind of day to my kids, and I'm hoping to do it again tomorrow.