I've had a headache since about March 11th--not the birthday present I was expecting. I use the word headache because MS symptoms are too inexplicable to translate into one or two word phrases that others can understand and empathize with. Actually, my head doesn't hurt--the pain is contained in one area, it is electrical and alive much as a summer thunderstorm. If you flattened a #4, no make that a #2, coffee filter on top of your head, and then drew an imaginary line down the middle leaving only the right half, like a weather forecaster, the boundaries of the storm are defined. All of the time it feels like an electrical current is pulsing in this region. Randomly, lightening strikes and a deep stabbing pain comes out of nowhere. Last night was a particular low point, about 2am I was wrenched from sleep by a flash of pain so intense that I unknowingly grabbed and woke my husband. He was unable to sleep for the rest of the night--I can imagine the adrenaline of being awoken this way and his concern for me were the cause.
I am sharing this to demonstrate the complexities of MS and the challenge of understanding and living with both odd and unrelenting symptoms. At any moment, this storm can and I hope will pass. It is the not knowing; the oddity; the sporadic nature; and changeableness of symptoms that makes MS so difficult to live with. Will my 'headache' fade by lunch time, next month or is it here to stay?
I say this, fully acknowledging the impact of MS on my life--sometimes the hardest thing to live with is seeing the toll it takes on my husband. He is a doll and says he wouldn't be anywhere but here taking care of me, working, and managing our lives. But, neither of us chose this life. I am so grateful that in the seeming randomness of college dating--I managed to find a man who stands by me through it all. This morning he made my breakfast, helped me get settled for the day, picked up the living room, and headed off to his demanding job without complaint. All on about four hours of sleep. I have the day to recuperate and nap--he will spend his day in the complex world of statistics and Excel formulas. Tonight, he will come home, cook dinner, do some laundry, care for the house and bills, and hopefully get a good nights sleep.
Unless, the thunderstorm intensifies and he is awakened in the middle of night where he will hold me, give me a head rub, and watch through the night for more lightening strikes. The next day, without complaint, he'll start another day and do it all over again.
I often say that with MS I have only two choices: live each day as best I can or jump off a bridge. I choose to live. My husband chooses to be here helping and loving me every day. For that, I can never truly express my gratitude.