Mobility was always paramount to her life. As a child she hiked acres of hillsides, rode horses, biked, skated and spent evenings playing statue, hide and seek and kick the can on the steep streets in front of her hillside home. Track was the only sport at which she excelled. College brought a more sedentary period. Her focus was study. Later she fell in love with martial arts. Then the gym and a switch to racewalking when jogging hurt her back.
She always tells her husband that if in the future her brain is dinged out and she wanders about placing rocks in interesting patterns with a smile on her face just know she is happy.
She was sore. Her thighs and calves mainly and up into her quads. This pain didn't seem to correlate to recent workouts, although the feeling was familiar. Over a couple of weeks the pain escalated and moved into her arms and shoulders. Still she tried to find a reason. You don't complain to a doctor about being sore. The day she had an appointment with her doctor she couldn't dress herself. Bending to pull on socks just wasn't possible. Hooking a bra laughable, although it wasn't a bit funny.
She was diagnosed December 6th 2014. Polymyalgia rheumatica. An autoimmune disorder of the muscles and joints of older persons characterized by pain and stiffness, affecting both sides of the body, and involving the shoulders, arms, neck, and buttock areas. Highest incidence of this malady is in caucasian women. Onset usually around age 70. Bingo. Although she had never even heard of it, one in a thousand people develop pmr every year. Her doctor prescribed Prednisone, the drug of choice to treat the symptoms. She sped to the pharmacist that afternoon. Relief was dramatic. She heard horrific prednisone stories from everyone who had ever taken it or knew of someone who did, but instead she felt zero negative side effects and prednisone became her new best friend.
After a year of living normally her pmr had not burned out as she had expected and hoped. Prednisone can be your friend, but it also has quiet negative side effects. Bone loss - she is already osteopenia, cataracts and diabetes. With the help of systemic enzyme therapy she slowly lowers her dose. Her pain does increase somewhat, but she is looking for tolerability not perfection. After a couple of months she is finally thrilled and proud to be prednisone free.
In the days and weeks ahead the pain builds. She begins to dread going to bed at night. She knows movement in the mornings will be excruciating. Although the stiffness and pain ease a bit as the day progresses, typical of pmr, she knows she must move through the pain initially or be immobile. Each morning as she eases herself painfully up from the bed she assesses. Which shoulder and arm hurts the worst. Does my right thumb work today. How's my grip? Which sweater or shirt has a zipper all the way down the front. She tries to just breathe. Relax her shoulders. Make friends with the pain. Her knees feel like overstuffed sausages that might burst when she tries to bend. She can no longer reach to her back with either arm or touch her toes. Her neck can't bend far enough to look behind her when she drives. The shooting pain when she attempts to raise her arm takes her breath away. She is embarrassed when she occasionally hears herself gasp aloud in public. When she goes to the gym she is now a handicapped person. She attempts the moves. She accomodates, but feels she is watching someone else from outside her own body. She is a stranger to herself.
One morning she looks up at the ceiling fan overhead. She thinks she sees a bit of gray building on the leading edge of one of the still blades. She cannot imagine ever having the strength or motivation to jump up and wipe them down. She does not know this person she now lives with. She feels like she's aged 30 years.
Soon she can no longer lie down at night. The moment she gets horizontal the throbbing aches in her shoulders and arms is too much to bear. For relief her choices are sitting bolt upright, standing or pacing. Pacing feels best, but how she longs to lie down. She is so tired. Sometimes she whimpers but that takes too much energy and doesn't help. When she sees the sky begin to lighten she is grateful. Nights are dark, long and painful. There is no distraction.
A friend with rheumatoid arthritis tells her to try a prescription dose of Aleve at night for 10 days to break the inflammation cycle. She begins that night and is able to sleep for two whole hours. MIracle. That's the only night it works, but she is determined to continue the experiment. On the 5th night, after four nights of being mainly awake, it's difficult to sleep while upright, she knows she cannot live like this. She just hopes she can make it through this night so she can start back on prednisone in the morning. It's not really a choice it's a necessity.
So day two on a low dose and she slept in her bed all night for the first time in a week. She was awake with pain off and on, but got up from her own bed. She may up her dose tomorrow to get a little more comfortable. She is familiar with this dosage dance, but she is sad to be back on steroids. However she is beginning to feel like herself again and this makes her joyous. She has never had to struggle with mobility or serious pain before and can't believe her body is acting so alien.
She recalls reading Agatha Christie's autobiography eons ago when she was a fan. She thought Agatha so wise when she said as she aged there were things she could no longer do. Her teeth were bad and she could no longer enjoy her favorite blackberries so she simply indulged in more clotted cream. Agatha was not as mobile as she once was so attended the theater more frequently, a love there was no time for earlier in her life.
She remembers thinking how graciously Agatha stepped into her new position in life. Now she wonders if Ms Christie did that as easily as it sounded in her book. Still when she thinks of the possibilities, she has nothing to complain about. She can still pick up small rocks anyway and arrange them in lovely patterns.