Thursday, June 4, 2009


I've gotten a few questions from people who don't see me on a regular basis regarding what my daily function is like these days. It's really pretty good considering where I was a few months ago. I am able to:
  • Live independently in my house and do basic chores such as cooking, cleaning, inside-of-the-house stuff. What I can't do are things like operate a weed-eater, get on a ladder, get on my hands/knees to dig in the yard, etc. So independent living: yes, but I still need help with household stuff beyond basic chores.
  • Transport myself fairly effectively, both on foot and by car. My legs are the strongest part of my body, and I am walking to work (about a 1.25 mile trip each way). When I am on my feet, I look strong and almost normal. I am much more defunct once I am off of my feet... it's as if my legs provide much-needed leverage for other activities, and when you take them out of the equation, those activities become more difficult. For example, I can walk for miles at a time, and on hills, but it's still difficult for me to haul my own body weight up from a lying position. It's a little bit of a paradox, if you don't understand what's going on. Basically, the disease weakens the muscles closest to the core of the body more so than the ones further out, hence the strong legs but weak body.
  • As just mentioned, I am driving. I just started this within the last few weeks. I started driving around town, and have ventured on the interstate a couple of times. I haven't traveled anywhere out of town yet, though. Am hoping to go somewhere before the summer is over.
  • I am working full-time. I often feel like I am not quite able to handle my ordinary workload, especially when it comes to the more physically demanding tasks like maintenence. I also still feel like I am experiencing a little bit of the holdover from last semester when all of my work got delegated, so when I finally came back, I felt lost. But we are in summer mode now, and I am hoping that during this time I can re-set, re-engage, and feel 100% in my normal capacity by the time the fall semester rolls around.
  • I am getting out socially, but not as nearly as much as I would usually be. I am still very physically uncomfortable, primarily on the Prednisone (I hope, and not the disease), so outings are not as enjoyable as I would like them to be. Plus, I am trying to take very good care of myself... eat well, drink less, rest when it's time to rest, stay out of the sun, don't engage in any situation where I could get hurt (remember the dog bite?), etc. So, I am a little bored socially, but my friends are wonderful and do a good job of making sure that I am included in social situations as much as I want to be.

I am hoping that by this time next week I will be reducing Prednisone again, and I anticipate an improvement in quality of life with another reduction. If I could get rid of this eye pressure, speech mania, and joint pain, I think that I would enjoy outings a little more. I'm not sure if going down to 40 mgs will do anything, though... still a pretty high dose. I'll let you know what 40 feels like, hopefully I'm there soon.

The activities listed here are primarily what life consists of these days. I feel like I have reverted back to fundamentals like self-care, work, and making sure that I am in close contact with family/friends. I don't have nearly as many irons in the fire as I usually do, and most of my energy is focused on trying to get well. My world seems pretty small these days. I know that it's what I need to do to take good care of myself, but it contributes to that "left behind" feeling that I've described before. I love being on-the-go and doing it all, but sometimes we just can't.

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