First of all I just need to say, I have the best boss in the whole world!!! You might think you do, but no, I do. I am completely out of all my paid leave time, both vacation and sick leave. I haven't been able to get back to a normal work schedule since I started the Gilenya because of the crazy Sleepiness. I can usually get in a 6-8 hour work day, which is a bit short of our 10 hour day. I have been working on the Annual Report at home, on the weekends, but I was still short hours last pay period. Financially, I can juggle, being short a few hours, but I was going to be really short for this pay period. Then my boss donated 100 hours of his sick leave to me. His incredible generosity has left me completely speechless, has reduced my stress levels immeasurably. I can begin to believe the affirmation that I have been whispering all week: "Things work out. It will all work out."
Wednesday, we had our first Board Meeting since I have been on the Gilenya, and it didn't go well, at least for me. My boss thought that it was a good meeting. I was not on top of things, and halfway through the meeting I got ran into the M.S. fatigue wall. In the ten years I have been doing these monthly meetings, I have been able prepare and balance my responsibilities, as well as postpone or skip the interferon shots so I would never bottom out during a meeting, or a retreat, or a grand opening, or a city council presentation. Wednesday afternoon I ran into the fatigue wall so hard that even the simple act of typing hurt. At one point my ears started buzzing and I was seeing stars I was so lightheaded.
When the meeting was over, everyone was out the door before I could blink, and so I couldn't ask anyone for help clearing the meeting away. Usually, my coworkers are really good about volunteering to help me with both the set-up and clean-up. I really do have great coworkers, but this meeting went late, and everyone had places they needed to be. I did it myself, which is not a big deal, it's my job and I usually can do it myself, but I had to stop and rest so many times it took twice the time is should have. I was at work until 8:30, which isn't even close to the latest I've ever been there, but as it got later and I got more tired I became concerned about driving home. Home just felt so very far away. I cried the whole drive home. When I got home I realized that I still needed to call my mom, because it was her birthday. Something that should have been happy, felt like one more hurdle I had to get over. Now, I'm realizing that I missed a whole bunch of birthdays this week. I'm such a bad friend. What is the statute of limitations on writing Happy Birthday on someone's facebook wall?
Impressions: This has been an emotional, stressful, joyful, exhausting week. I have been letting myself get stressed about my fears: letting people down at work, letting my friends and family down, the piling medical bill, and I have been hyper-focused on my weaknesses, my extended sleeping schedule, the piling medical bills. However, I am beginning to get a flicker of fear that the sleep issue and the reduced stamina might not get much better as I continue with the Gilenya. Every time something like this happens I go through the process of accepting that Multiple Sclerosis is disabling, and my abilities will be constantly changing. What I could do yesterday, I might not be able to do today.
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