I know that doesn't have much to do with MS or Fingolimod, but in a round about way, it does.
I have grown my hair for several years. Not because it was a goal or anything, but more because I never got around to making a hair appointment. I got pretty good at wacking off my own bangs, so the rest could grow and grow, but the bangs, when they bothered me, were easy to trim. All which made the necessity of going to a salon and having a styled cut done optional.
My hair was also turning white. Notice I didn't say "gray" because that sounds like I am old, which I am, but refuse to believe, thus the term "white". Sort of a lighter than blond color -- that's how I perceive it.
Well, I've wanted to dye my hair, but didn't want to do that until I got it cut. Why buy 3 boxes of color when you could do it with 2, right? But here's the MS connection/catch: Perhaps it's only in my hypochondriacal brain that this issue lurks, but I have been deathly afraid that the chemical smell of hair dye or the reactions between the dye and my hair/scalp were going to trigger an attack.
I know that sounds silly, but after living with this disease and being in a long term state of denial, peppered with anxiety and worry, things like hair dye can become formidable challenges.
The turning point for me was realizing it's been 8 months now without a relapse. I can quit holding my breath and dare to feel normal for a few minutes. It's okay, I probably won't need the cane or walker after the experience. It's just that I feel like I have been tensed up for months now waiting for either a) another relapse or b) some nasty side effect that would cause me to have to leave the trial in which case I would then be waiting for "a)" again.
I sat down the other day and thought to myself "8 months. That's a long time, really. A long time to wait for another shoe to drop. And what have you done with those 8 months??!" (I can be hard on myself even tho I never pay attention to the voice in my head that's trying to push me to do things like be more organized and stuff like that.)
So I looked in the mirror, in a figurative way, and decided it was time to make some changes in my life that would mark a new beginning. To shed the depressed, tired, old shell of a person I had allowed myself to become and take back the person I think of as the true me.
While in the midst of this personal revelation and need for change, I visited my son's school. A teacher there who I have known for years said "Have you ever cut your hair?" I'm sure she didn't mean it in a rude way, she was smiling when she asked and seemed genuinely intrigued. That got me thinking.
I looked in the mirror this time in the literal way. Man! My hair had gotten out of control. It was raggedy and waist-length. Funny how fast hair can grow when you procrastinate about getting it cut. I've only been meaning to for a few years. :-)
So, to shorten this story up (yuck yuck) I got 12 inches wacked off. Then she styled it a little for me and fixed my bangs so that they look like a real stylist cut them instead of someone looking in the mirror trying to remember that things are backwards from the way they appear and if you move one way in the mirror, you're moving the other way, really. (a dangerous thing with scissors in your hand).
Then Friday I went and did it. I sat in a salon full of fumes with chemicals smeared on my head for 2.5 hours all in the name of Starting Fresh and Making A Change. I had the whole beauty parlor gawking at me like I was a side show freak after it was all over. Someone said Shirley should have taken before and after pictures because the change was so dramatic. Someone else said it took 20 years off my appearance. I was ecstatic.
Until I got home.
My nine-year-old saw my hair and made a funny face. I asked him if he thought my hairstyle and color made me look any younger. His reply was precious and I laughed until my sides hurt...
"It makes you hair look teenage, but it doesn't go with your 'old lady' face."
*sigh* Next comes makeup, I guess.
Hey, if I lived through a cut and color and the MS monster didn't attack me, maybe I could smear a little goop on my face to keep everyone involved from having to look directly at the unpainted old lady face staring out from inside this teenage haircut. It's not for me, you understand, it's for the benefit of those around me.
Thanks, Fingolimod or Avonex, whichever one of you is real... You have given me the proverbial New Lease On Life and allowed me to just exist like a normal person for a while. (Yes, I realize I was holding the camera really weirdly. My hands are not deformed, they just look that way here.)