Tuesday, January 06, 2009


Nights are the hardest. Although I'm awake longer during the day, I'm busier. I have nothing to do at night but think, starting when I nurse Ava before bedtime. It doesn't help that one of my favorite songs on her bedtime CD was playing in the earphones during the brain MRI, the one that revealed the five lesions. The loud jackhammer noise of the MRI machine is slowly lessening, but it's still there. I feel as though this disease has already taken so much from me (at least mentally) so I'm not willing to give it Clair de Lune. One day I'll hear that song and think fondly of the year that I nursed my baby and not of the MRI. But for now, the jackhammer creeps in.

Nights are the hardest. I am hateful, but even that is difficult for me right now. I feel emotionally numb. My right leg has improved greatly since starting the steroids and my left leg is starting to recognize cold as cold and not hot or pain. That's positive. But at night I hate it all. I hate not knowing why. I hate that I have a disease. I hate that I have a neurologist. I hate that come Friday we'll be discussing lifelong drug options. I hate that I don't have the feeling right now to yell out loud. I know steroids can do weird things to your body and perhaps this is part of that. I hate that while just sitting isn't what I want to do, it's all I can do at night. Part of me is afraid to just sit as this will allow the thoughts to creep in, but tonight I just feel empty. Drained.

It's such a weird feeling. I had a difficult morning as my mom isn't feeling well so I was back to being mom full-time while Joe was working. I had a good afternoon with a visit from a dear friend who traveled hours in the rain with her little girl. Ava had a short playdate before a good nap. I had some wonderful heartfelt conversation. We had delicious dinner brought to our house, complete with some yummy gluten-free mocha mousse and appple crisp. Along with that came some homemade bath salts that smell wonderful. I hate that I wasn't able to embrace all of this as enough to carry me through to tomorrow. It's not that I need more. I am learning to walk through this with baby steps. I might be fine right now and a little down in an hour - and that's ok.

I enjoyed some quiet time with Joe this evening. We left the house and went to the little cafe up the street. He had a beer. I had a decaf coffee that he said didn't deserve to be in a cup. I laughed at that. We talked a little about his work, a little about MS, but we mostly sat quietly holding hands.

I hate that Joe has to think about MS every day, but I couldn't ask for a more supportive, more nurturing, more loving person to think about this with - even if he does buy a lousy cup of coffee.


Serena said...

Dale - you write so beautifully. Words are healing and although you may not be able to yell out the hurt and the frustration right now....you are writing it out....so let those words form and let them envelope you....healing you....


Sybil said...

Dear Dale - Just a note to let you know that we are praying for you, Joe, and Ava. I have a wonderful friend who has MS and has had it for many years. He functions normally and is a wonderful father, husband, and friend. I know things are hard now, but I have learned through my life that hard is not impossible. You will be in our thoughts. Love, Sybil (Joanna's neighbor)

nikole said...

All of your feelings make so much sense. I am thinking of you so much and anxiously awaiting an update from your appointment tomorrow. Lots and lots of love.