Yesterday, my neurologist’s office called to let me know that my doctor had her baby early and will be out on maternity leave for a few months. So my appointment scheduled for Wednesday–the one where I was supposed to be officially diagnosed and get the wheels moving for treatment–had to be canceled, and they weren’t ready to reschedule because they didn’t know what openings they had or whom I would be seeing instead. I let the person on the phone know I was having new symptoms in my right leg affecting my mobility, asking to get in as soon as possible; she said she’d make a note of it and to expect a call next week.
Though I was disappointed, I still ran errands with my niece Abby before we visited a friend. It was a lovely afternoon, but I’m still learning to deal with the fatigue that MS brings, and problems with my leg made doing what we had planned difficult. First, we stopped at the library to check out books for Abby. I was so unsteady on my leg that I sat down while she made her choices before slowly walking back to the car. Then we had donations to drop off at the college, bringing another precarious walk and a set of steep steps in and out. Driving from place to place in rush-hour traffic brought its own challenges as my leg was exhausted by the effort of holding down the brake for long red lights, a strange and scary sensation. By the time we got home, my leg was tired and useless. I was depressed.
This morning, rested, I was determined to go for a walk in the beautiful weather we’re having, trying to get back to my routine. My niece and I made pancakes before driving to a park I like with a trail that is a little more than half a mile around a pond. I usually walk around it 2-3 times. Today I didn’t get more than 40 feet before knowing I wasn’t going to make it, not even to the first bench a quarter of the way around. My leg felt like it was encased in cement, and each step with it required concentration and effort to make sure I wouldn’t trip, that my knee wouldn’t buckle. Being unable to do something so simple left me sobbing through the drive home. Abby stared politely out of the window, quietly saying she understood when I apologized, asking how she could help. I called my mom, finding comfort in hearing her voice and in her words of reassurance, though that brings guilt for passing the burden of it on to someone I love.
Rationally, I know I should be grateful that I can still get around my house, if clumsily. Instead, emotion has taken over: I’m bitterly frustrated, struggling with anger and wallowing in helplessness, fearing all the things I cannot control. I wasn’t ready to have such complications so soon, and I don’t know if my leg is going to get worse. Is this a relapse? I think so, but I don’t have a doctor to talk to about it right now. When I call the office on Monday, I may be told to check into the hospital for a few days of steroid infusions, which is all that can be done for MS relapses, and they’re only sometimes helpful. This is further complicated by the fact that I don’t have an official diagnosis yet and now don’t have a date when that might happen.
After having to rest so much following my spinal tap, I was looking forward to getting back to life as usual. Yet here I am again on the couch, fighting the urge to give in to despair. That feeling of frustration needs to be indulged because it’s stronger than my resolve today, but tomorrow I’m determined to get up and make the most of the day, even if it is spent mostly off my feet, pretending it is what I’ve chosen instead of what is forced upon me. Frustration and self-pity aren’t going to get me anywhere, so I need to snap out of it. I owe that to the people who love me.
I owe it to myself.