Today I’m writing from beautiful green Oregon where my mom’s side of the family lives.  I was talking with my Aunt Debbie about my blog and my role at Sanguine BioSciences when she brought up a great topic for this blog.  Well, several great topics but today

I’ll choose to talk about the difficulty of making seemingly small decisions when you have MS

Let’s start small. We had a big family get together today & I saw many of my cousins who I haven’t seen in several months.  One of my cousins (who actually named his daughter Layla Kaley after me), was fighting a minor cold.  I noticed and asked him about it right as he was coming in for a hug.  When he confirmed he was fighting a cold, I immediately took a few steps back.  What a minuscule act.  I made a quick decision to protect myself, after all, you know what happened when I was knocked out for a good three weeks when I was sick recently & I still haven’t gotten my voice back actually.  It might seem like a small decision but it was actually pretty tough for me.  I love my relatives and I cherish family time, especially because of how my illness has taught me to appreciate life.  Of course I wanted to give my cousin a huge hug after so long, but I had to resist, and protect myself.  Even if it risked hurting his feelings.  All afternoon I felt badly that I may have hurt his feelings and I really hope that he understood.  I did my best to explain it in a casual non-offensive way, but since people don’t know what it’s like for me to get sick, it’s understandable that someone might get offended.  They might think “oh come on, it’s not a big deal, I’m not even that sick.” 

But to me it’s a much BIGGER deal

On a grand scale, this same concept applies to just taking this trip up to Oregon for Martin Luther King, Jr. weekend.  Any trip I take involves a calculated process where I have to weigh many factors.

For this trip I had to consider the timing of my infusion – could I get my infusion before my flight but with enough time to rest so that I actually absorb the benefit of the medication.  On this particular trip I think I actually fell short on this one and I wish I had left myself more time to rest between my infusion and my flight.  I had to consider recent MS symptoms and how this might limit my activities or what I will need to do in order to prevent any worsening of symptoms.  Oh and of course, I had to consider the timing of my return, so that I would be able to smoothly and quickly transition back to my routine once home in Los Angeles.  I took into consideration the amount of medication I had and when I booked my flight I actually had to order more meds so that I’d be prepared.  I even had to consider the kind of food that would be available to me during my visit since nutrition and diet play are an essential part of the maintenance of my health.

Although I don’t know for sure, I imagine most people weigh several factors when preparing to traveling.  Whether or not you do, the key here is that one error in this equation could result in a downward spiral of consequences for my body.

It can be overwhelming and isolating for me to have so many pros and cons floating around in my head all the time.  Sometimes it does turn off, but for the most part, I’m in this for the long haul which means that to make it to the Finish Line of my life with my health intact, I have to be calculating when making every day decisions. 

Going to the movies on a work night might cause a minor setback in their workweek for a healthy person.  A friend might say to me “what’s the big deal, you can go to bed early tomorrow.”  It’s hard to explain just how far that perspective is from my reality.  I personally consider a much bigger picture when I make a decision like that.  Will the experience with my friends at the movies be worth me feeling even more fatigued for the next week?  I do a body check too – have I had any recent symptoms that I could be aggravating by pushing myself tonight?  On the other hand, there are times when I can step back and say, “you know what, I worked out every night this week and have been getting plenty of sleep, I think my body can sustain this and it would only be a minor setback, if any.”

EVERY DAY,
EVERY DECISION, there are DIFFERENT FACTORS I WEIGH

Sometimes it comes very naturally and easily.  Other times I really struggle with the process and hate that I have to weigh so many factors when something seems so small and I really wish it was small.  Today I wish I didn’t let myself feel badly about not hugging my cousin.  I wish I could give myself a break and realize that it wasn’t a big deal and was just a quick decision & the right one.  The most important part of all of this is that I do the best I can to make the right decision as often as possible, but even so, my body can do whatever it wants and I cannot exert 100% control.  I never know what’s lurking around the corner so I can only do my best and always hope that’s good enough!