Things have been pretty good here for the past few days, at least since the last time I posted. Despite the pretty good, I still feel a little bit lost. I feel like I'm stuck in a pinball machine, waiting to bounce off of something that'll shoot me in a different direction. We still don't know anything with any degree of certainty, except that uncertain is the way MS works.
I'm hoping after the specialist appointments next month, we'll know a little more about my case. I'm also hoping that the doctor will go over my lesions with me; show me where they are, how me how big they are. I have the images from the MRI and would post one here, but they were depressing. I made a trip to the hospital last week to get the films from radiology. I was a little scared walking through the crowded hallways of the same place that just two weeks before had taken up so much space in my life and brought me face-to-face with so much uncertainty and fear. I held it together while I waited on the elevator for the happy family to pile in - a mom, a dad, a little girl and a new baby. They all looked so happy and I couldn't help but wonder if Joe, Ava and I would be lucky enough to experience that feeling again.
People ask me if I'm doing ok, if I feel alright. I feel fine - physically. I'm back at the gym five mornings a week (well, I say back like I went with any regularity, when the truth is I hadn't set foot into the gym in over a year and a half - I walk outside, not on a treadmill, weather-permitting). My right leg/foot is 100% normal; my left side, while not 100%, still registers cold with a small degree of pain (no more feeling warm instead of cold) but does not make me feel worse. It's what I call the "mentals" that make me feel bad.
Wondering, when I see a young family with a new baby, whether or not I'll be allowed to have another baby. Right now, that falls into the "who knows" category. The doctors we're scheduled to meet with might tell us that my condition is such that I need to be on medications right now and not off of them for any reason (pregnancy and nursing would be two such reasons to be off medications for any length of time).
Wondering, when I get hot at the gym, if I'm over-exerting myself and sweating more than I should be and whether that will cause a flare-up. When I asked the doctor about exercise, he said "that should be fine" but not to get too hot. Well, what's too hot? I don't know how to judge that, especially now if I get too hot, bad things can happen.
Wondering, when I'm falling asleep on the couch at 8pm, if I'm over-tired and pushing myself too hard (or whether I'm still adjusting to waking up at 5:45 to go to the gym). I like to nap - I could nap every day if I had opportunity to do so. But now when I'm tired in the evening, I wonder if I should have napped earlier. What is too tired? Sure, I've been a little busier than usual, driving to and from doctor appointments, waiting in exam rooms, attending meetings. But I've also been doing normal life stuff: having lunch with friends, going to birthday parties, grocery shopping, running errands, going to playdates. How much is too much?
How many children will I have? How hot is too hot? How much is too much? (I sound a little like Carrie Bradshaw - forgive me; I just finished watching the Sex in the City movie.) And when the mentals start chattering at 11pm, not knowing the answers to these questions with any certainty is very frightening.
I had my first real case of not knowing whether or not I could handle all of this the other night when Ava woke up crying at 9pm and would not fall back asleep until 11:30. By 11, I was done. I was tired (over-tired?) and feeling helpless (as nothing either of us did to soothe her worked). Then I started feeling as though my left leg was getting worse. How do you gauge partial numbness? Did my leg feel more or less numb than the day before? Was the sheet warmer on the left side than the right? At 11 o clock, the mentals are like little gremlins, pushing doubt into your head, pushing out any sense of rational, logical, sanity. All I heard was chatter; all I felt was doubt.
I ended up sitting on the side of the bathtub, sobbing. I called on my "inner Joe" to help calm my nerves, but that didn't work. Luckily the real Joe came in and helped silence the chatter long enough for me to stop crying, take a Lorazepam and drift off to sleep. I hate that I need an anti-anxiety drug to help me sleep some nights. Surely I'm stronger than that - but some nights the mentals are stronger than me. Luckily after a good night of sleep, they're silenced to a whisper. Most days I can keep them at a whisper, but some days, they all whisper together and demand some attention.
One way to ignore the whispers is to think of all the things accomplished during the day, the week, the month (we'll get to the month mark soon, so for now I'm focusing on the day and the week). Some positive things accomplished include finding a counselor who I think I can work with (I see her again tonight, so I'll know more after tonight's session whether there will be a third); finding a great massage therapist; knowing that for now I can still nurse my baby and don't have to wean her if I don't want to; learning that I'm not allergic to anything (at least to nothing that was tested) so my immune system can remain happy (at least as far as what I'm eating is concerned!); and coming closer to perfecting the brownie recipe (next time, a little more rice flour will be added to the mixture).
Playdates and phone calls, visits with friends and working with fondant, care packages and time with a sketch book all keep me grounded. I never thought much about what kept me grounded until I started feeling like I was floating away. There are still times when I feel like I'll come crashing down, but for now, I know that if I keep myself planted a little on the ground, the crash won't hurt so badly.
I'm a dork. I pulled out the Sound of Music soundtrack the other day and sang my way through several trips to and from some place and home. How can you not feel better with Julie Andrews in the car with you? I simply remember my favorite things, and then I don't feeeeeeeeel so bad!
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2 comments:
Oh, sweet Dale, you have been through *so* much. You have so much to process and adjust to, it makes so much sense that learning to wrap your brain around your new reality would take lots and lots of time, and that in the meantime, there will be lots of chatter in there. Please be patient and gentle with yourself. One day at a time, one moment at a time.
I love your idea of focusing on what you have accomplished. I recently read on a blog about actually charting down daily accomplishments - to keep them visible - and to let you really see what you've done. I think I'm going to try it!
I'm so glad you and Joe have each other. I am looking forward to knowing him better.
I love the visual of you singing in the car. It made my day.
You are strong.
You are brave.
This will get easier.
Dale,
I remember reading that when a child is going through difficult times (like the "terrible two's), that is when they experience the most growth. Now I realize that this is true for adults, too. The past year has had some very difficult times in my life, but now that I can look back, I see that I have grown a great deal. There were times, just like you are experiencing, when I would wail that I'd grown enough, thank you very much, but the one constant is God's presence through it all. I have been blessed with a group of stalwart friends, like your mother-in-law, who constantly reassure me that God has a plan (see Jeremiah, chapter 11) for my life, and His plan is for the good. Even at the age of 62, I still don't know what that plan includes and I, too, wonder a lot, but rest assured that He knows! Asking qestions is good--I often find that voicing my questions (and fears) aloud makes them less scary. Dale, remember that you ARE strong and loved, and surrounded by prayer warriors. God bless you, Joe, and Ava.
Jan Hurd
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