Contrasting what my life is like now, compared to when I was diagnosed, the difference is striking.
Sleeping was hard. My hips hurt so much that I finally bought those egg-crate shaped foam cushions for some extra-soft padding. One helped, but I found that two layers were even better. When I managed to sleep despite the hip pain, my body’s temperature regulation would malfunction. It was almost like having a fever. Sometimes I’d feel like I was freezing, but other times I’d wake up drenched in sweat. Sleeping on a large bath towel was a necessity if I didn’t want to have to change the bedding daily. Normally I’d only get to sleep 2-3 hours at a time before waking soaked, or shivering, or by a toddler who needed some middle-of-the-night TLC.
Upon waking in the mornings, I’d work my hands open and closed, first attempting to make a fist, then opening my hands and trying to straighten my fingers. Back and forth, back and forth, until finally my hands no longer felt swollen and the fingers would move as I wanted them to move.
I’d lay there waiting until my husband went to shower, then I’d roll over and slide out of bed. As soon as my feet hit the floor, I’d yelp and fall back onto the bed. Then, after recovering from the pain, I’d gingerly lower my feet to the floor and gradually add weight — a little at a time – until I could stand.
Once vertical, I’d shuffle to the computer and sit there, checking email and catching up with friends’ & relatives’ Facebook pages while awaiting my turn for the morning ablutions routine. While sitting at the computer, occasionally I’d lean forward and rest an elbow on my desktop, then quickly jerk my arm back while searching fruitlessly for the needle or push-pin or whatever it was that had jabbed me.
In time I discovered tricks to make mornings easier: sitting down in the shower, staying in the shower to comb my hair before rinsing out the conditioner, slipping into a terry-cloth robe as a simple way to dry off (no more trying to reach my back with a towel), setting clothes out the night before instead of having to bend down to reach low dresser drawers first thing in the morning when I was stiff, and rearranging the closet so that all my clothes were on the waist-high rods (my husband’s shirts and slacks got moved to the top because his shoulders work just fine).
Eventually I’d make my way down the stairs. The occasional stab of pain in my knees would make me think of my father, and how (even in his 40′s) he’d joke about being “old and decrepit.” It’s not quite so funny when you’re the one who seems to be falling apart prematurely.
On his way out the door, my husband would tell me, “I love you. Don’t overdo it today!” Then I’d sit down to figure out exactly how much I might be able to accomplish. That usually involved examining both the chore list and the calendar to see what was most pressing. I knew that if any errands had to be run, they had to be done between 9 and noon; I couldn’t have the kids ready to leave before 9:00, and I’d be out of energy by noon. Another constraint was that I could go a maximum of three places; after that, I would be too exhausted. Little did I know that things would get worse.
I recall going to see my grandfather in eastern Washington one weekend. It was a miniature family reunion, and although it was great to see people, all I’d done was sit and talk, but I was wiped out. On the last day, we cleaned up our meeting hall and everyone was ready to leave right after lunch. Me, though? I was ready for a nap and dreaded having to drive back across the mountains when all I wanted to do was collapse. When it was time to get into the car, my daughter got sick. I felt awful for her, but a little part of me was thrilled to phone my husband and tell him we were staying another night. We got to sit in the hotel room and rest, and I was fresh for our drive home the next morning.
Things got worse. I was teaching swimming lessons two half-days a week, and was also head of the kids’ program at our church’s midweek service. What people didn’t realize was that I was getting worse and couldn’t do anything else. I would drag myself to the pool, then go home and collapse. Aside from those teaching commitments, I didn’t leave the house. I went from three-errands a day to three a week.
Back then, it was hard to get things done. When you have the flu, you have no energy. It was just like that. I could wash the laundry one day and fold it the next, but never get it all done in one day. I’d make a grocery list and email it to my husband, who would stop and do the shopping on his way home from work. Just about all the meals went into a crockpot right after breakfast, because by mid-afternoon I’d be too tired to cook supper. If I didn’t manage to get the crockpot started, everyone knew we’d be eating either beef-n-beans or pancakes (because I can whip up a batch of pancakes nearly as fast as you can pour a bowl of cold cereal). We had always had a garden, but that year never got one planted. I was perpetually exhausted.
Exhausted… and confused. Why did it feel like there was something sharp poking my elbows even though there was nothing there? Why did raising my arms make my shoulders hurt? Why were my feet and hands swollen in the mornings? Why did my hips hurt so much?
That was then.
Continue to Part 2