“Normal” Life Transitions When You Have MS – Why My Blog Went Dark

Hi there!  Welcome back!  Or I guess I’m the one coming back…either way, it’s good to be here again.  So, where on earth did I go?  I’m glad you asked, let me tell you!

Over the last month, three big things happened: I moved, celebrated Passover, and participated in Walk MS.  This year, these three events all converged at the same time in my life which made for a very trying few weeks.

MOVING

Most of you reading this have probably experienced at least one move in your life.  (I’m talking about a big move, with furniture, not moving into a dorm room with two suitcases.)  When I posted my last blog I was living in a two bedroom apartment with a roommate and now I am writing to you from my very own one bedroom apartment.  I couldn’t be happier!  

But oy, let me tell you, the moving process, as you probably know, is no picnic!  I spent days packing boxes, taking them to my new apartment, unpacking them, and then repeating the process – over and over and over again.  This process is exhausting for anyone, and then, of course, I’m reminded that I have MS.  I might say that looking back I have no idea how I actually got this done but then I am also reminded that it was only with the help of incredible family and friends.

ASKING FOR HELP

The only way I survived a three week move, with a week of Passover during which time I wasn’t entirely able to engage in work or moving, was because I had an amazing support team.  My parents and friends worked tirelessly alongside me to accomplish this task, from painting to packing to skillfully loading and unloading furniture.  A friend of mine who is herself a patient, commented on how much easier it is sometimes to ask for help for a “normal” task rather than asking for help with something related to MS.  For example, people understand the process of moving and that an extra hand is always helpful.  On the other hand, asking for help on infusion day is not something that is familiar to people so there are far less friends and family who rush to volunteer their assistance.  

This is an internal phenomenon as well.  I personally have a much easier time asking for help for a “normal” task rather than asking for help because of my MS.  People move every day, and even healthy people utilize help moving.  Asking for help with a move isn’t couched in the context of illness in my mind so I seem to be able to ask without as much hesitation.

Whatever the reason, I am glad I asked for help and so grateful that I received it.  Even with all the help I was still absolutely wiped out by the end of every single day in the last month.  

TEMPORARILY RE-PRIORITIZING 

With such a jam-packed month that had some of the longest days I’ve faced in quite a while, I had to use my best judgment to plan ahead in order to avoid an exacerbation in the process.  Let’s be honest, this situation was truly the perfect storm for someone with MS – Walk MS, moving, and, of course, a full time job, all at once.  Oh and I know I already mentioned Passover but for those who have not experienced this for themselves, Passover requires an immense amount of preparation.  The entire Jewish community goes into a frenzy for a good two weeks prior to the holiday.  

It was clear that I had to make some choices before the “storm” hit.  I always struggle with letting go of things; I always want to feel like I can accomplish it all.  But I knew that in this situation, that would be a recipe for disaster and the last thing I want right now, or ever, is to get hit with a serious exacerbation where MS decides just how much I cannot accomplish.  I prefer to make that decision myself.

Part of this balancing act meant letting go of the tasks I usually take on as the team captain of Youth Against MS – my Walk MS team.  We still had a team at Walk MS 2013 on Sunday, April 7th, but I made the choice to let go of any of the stress and worrying.  I let go of the hours of preparation I usually put in and chose to just enjoy myself and appreciate my teammates at the event.  This was a pretty big shift for me.

I also made the decision to avoid preparing for Passover by staying with friends during the holiday.  This might seem odd and, in some ways, interrupting my routine by not sleeping in my own bed could have been detrimental.  But I had to conduct a cost-benefit analysis, and ultimately I realized it was best to let go of the ritual Passover preparation.  Although the preparation is draining, it can be a spiritually uplifting experience, and I accepted that I would lose that component this year.

Lastly, I had to let go of sharing my thoughts with all of you for a while.  It has honestly been driving me nuts!  It was pretty tough to let go of blogging for a few weeks.  I’ve been wanting to share so many thoughts on this process and now that it’s over, there are more current topics that I need to be writing about.  It was clear to me though, even before I set out on this tiring transition in my life, that I would not have the clarity of mind to write anything coherent or the ability to keep my eyes open at the end of each day.

VICTORY

Despite having to take a step back in some parts of my life in order to move successfully without damaging my health, these choices were absolutely essential.  I am still in the process of unpacking and organizing my new home, but I am OK.  I might not be at my peak health right now but I’m pretty fit after all that lifting, and I haven’t had any new symptoms!  I don’t know that I would have let go of anything had I been faced with this situation at an earlier stage in my life.  I think there’s a good chance I would’ve just pushed myself to still do it all and suffered the consequences later.  I think the people closest to me would agree with this self assessment.  Although I missed you, I am at peace with this decision and am very grateful that I still feel well after everything I just experienced.  So, for me, this was a victory.

I am sharing this victory to both explain where I’ve been for all this time and to take a moment to pause and appreciate the good that comes from making healthy choices.  I hope that writing this will serve as a reminder to myself and others, whether patients or not, to strive for balance in our lives and to take a step back as often as possible in order to keep things in perspective.

Stay tuned for upcoming blogs about  what Walk MS means to me, and reflecting on Annette Funicello’s death.