Making hard decisions about what we can and can't do

I'm a little sad right now, but proud of myself for making a grown-up choice. I was supposed to be getting ready to go to the Americas Committee for Treatment and Research in Multiple Scleroses (ACTRIMS) conference in San Diego to report for the National MS Society, as I did last October from ECTRIMS in Europe.
It's a perfect situation for me, an epidemiologist who has MS and loves to write about it. Perfect, except for the fact that this assignment is also really demanding – physically, as well as mentally. I know from my past experiences at ECTRIMS that when other people were settling down to relax after a long day at the conference, I was opening up my laptop to make sure I captured the day's highlights accurately. When other conference attendees were discussing the conference over lunch, I could often be found eating a bag of potato chips and trying not to let the crumbs fall onto my keyboard. It was exhilarating, but it was exhausting.
So, when the Society asked me to attend ACTRIMS and blog about it, I was initially beyond excited. I started wondering what new breakthroughs and controversies I was going to hear about and what news I would be bringing to people with MS.
However, then I thought about how I was feeling. The weather was starting to get pretty warm when I received the formal invitation. I was in the middle of a pretty bad fatigue cycle that starts to happen in the spring months and gets worse as we head into summer – I keep going, but my days are punctuated by naps and I climb into bed and crash pretty early at night.
None of this was compatible with covering the ACTRIMS conference. As badly as I wanted to go, I realized that I would not be able to do a good job in covering important topics. I'll admit that I was pretty tempted to "fake it" and go anyway. Not only would that not be fair to the Society or anyone reading the blog, it would also be something that I would remember forever as the time that I didn't do my best.
So I made the very hard decision to turn down the offer to blog ACTRIMS. I am sad about it, but I am also proud of myself. The whole experience made me reflect on what living with MS could really mean: Besides the daily struggles, there are times when I just have to stay behind and be left out of the fun. As much as I dislike this phrase, it is a truism – life isn't fair sometimes.
I thought I would put down some of my thoughts around making difficult decisions and how the process can be made a little bit easier:
Be honest with yourself. First, I have to look at reality under a harsh light in terms of my symptoms and abilities. Then, I have to accept that reality. This is harder than it sounds, because most of us go through life cramming too much into our schedules and taking on too much responsibility. To say, "I can't do that right now" goes against many years of making it work, no matter what.
Be honest with others. This is also not in our nature. When someone asks how we are doing, most of us reply with a smile and an automatic "fine." I do it all the time, but then get annoyed that someone is expecting more from me than I feel up to. The vast majority of people can handle the truth. When I had my conversation with my friends at the Society about not being able to cover this conference, I told them how my symptoms were affecting me and that I wouldn't be able to do a good job for them. In return for the truth, I received concern and support. I felt much better after having this conversation that I was dreading.
Keep it in perspective. I had to remind myself that having to turn down this invitation doesn't mean that I will never get another opportunity like this. Instead, I should treat each situation as its own event without generalizing the rest of my life. True, I may not get to attend my cousin's outdoor summer wedding or take that evening class that I was interested in. Maybe it is something bigger, like having to turn down a "dream job" that would be too physically demanding or even that another baby might be too much to handle. Yes, these things are disappointing, but no one says that dreams can't be changed (or adapted) and that my life is not wonderful, even if it is different than how I had pictured it.
What about you? How do you deal with your limitations and making tough decisions about your abilities?

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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.