Saturday, October 24, 2015

Meningitis, migraines, meds, mayhem, and me

The title just about sums up part of my story for the past five years.  Since my diagnosis of a serious form of meningitis and shingles became part of my life, I have been suffering with the fallout, so to speak.  I struggle with chronic, debilitating migraines, extreme fatigue, and a whole host of symptoms that are associated with an overly-sensitized central nervous system which doesn't function with ease in the real world anymore.  I now live each day with a brand "new normal."   Sights, sounds, smells, weather, foods, etc. all produce a variety of triggers that can send me down a slippery slope of enjoying my life one minute to becoming disabled in pain and full of meds the next.  Believe me, it is not a pretty thing.  Not only have I had to learn to adapt and adjust and ACCEPT this crazy new normal, so have my dear family and friends.  Without such an AMAZING support system at my side, I would not be coping-----or blogging!  LOL.  

As I wrote in my first entry---Life is hard.  Life is messy.  Life is beautiful.  There are days when I feel totally and completely overwhelmed by my mess.  I can't just take a pill and move on with my life.  It is not that simple.  I suffer a lot of nasty side effects from my meds, and I push through as best I know how.  Not only do I physically have complications, but emotionally I feel fragile.  I have fallen into times of dimness and even darkness wondering how I will ever have the energy to navigate this long term.  My life as I once knew it and lived it, is gone.  I was a spunky, care-free, wife and mother who was very involved in the life of her family, school, church, and community at large.  Since I am a nurse by training, I was used to be an active "doer" and "fixer".  I thrived on activities and involvement.  That all gave me self-worth and certainly fed my ego.    Gulp.   Here comes the beautiful part of my story.  Slowly, and I mean SLOWLY God is transforming me from finding my self-worth in "doing" into simply just "being".   I am learning on a daily basis that there is so much beauty that comes with active being.  It is peaceful if I allow God's Grace to settle in my soul and surrender my every moment to Him. He is opening up a new way of living to me that is more contemplative in nature.  I probably would not have explored this lifestyle had I not found myself living with this chronic condition.  I know I still have something to offer to people that may not involve "doing" or "fixing".    It is not about me.  It is about God's work through me.  I try to live out each day with a peaceful and prayerful presence that will accomplish His work in whatever little way I have to offer.  

This week I had the rare opportunity of a short 24hr get-a-way with my loving hubby to go leaf peeping in Sturbridge, Mass.  God blessed me with enough energy and a clear enough head to enjoy some time out of the house.  Spontaneity is the name of the game for me most of the time, but it, too, comes with a price.  For instance, in order to prepare to leave for our little adventure for just an overnight, the shopping list of my emergency migraine kit that must accompany me at all times is about a mile long.  I have learned over the years to have my supplies of medicines and comfies and food and drink all basically ready in one place to make a get-a-way even possible.  Then there is the hotel room.  It must be free of smells.  Do they use carpet and or room fresheners?  I cannot tolerate smoke either.  Eating out at restaurants is very tricky.  Many foods set me off with unknown ingredients.  Is the place crowded?  Music too loud?  The real biggie is the ladies room---you guessed it---the awful glade plug ins that just about send me to an ER!  Have you ever tried to hold your breath for the length of time you are in a restroom?  Yikes!!  Either way I can almost pass out.  Gift shops and lovely boutiques are fun when they don't have 100 scented candles or soaps or perfumes everwhere out on display.  I do A LOT of window shopping by default.  LOL.  Let's just say that I was bombarded with a plethora of "smellies" on our little trip, but I was vigilant about self care and managed to dodge bullets so as not to have our sweet hours of couple time sabatoged.  My loving husband of 27 years deserves a medal of honor for taking such good care of me each and everyday without hesitation or complaint.  I am grateful beyond words.  God continually blesses us both abundantly as we learn to see each other in a different light.  I am humbled by receiving his tender care.  He is humbled as he watches me suffer with my affliction.  

I don't know where you are on your journey or what struggles you may be facing, but I hope you will search for some beauty in the midst of the hard and messy, at least for today.  The attitude of gratittude really does go a long way to finding true JOY.  


  1. Glad you were able to get away...can't even imagine how complicated it is for you to avoid the triggers! Things that we don't normally give a second thought to! God bless you and your awesome hubby! Can you set up the blog so that we can subscribe by email?