Wednesday, October 28, 2015

"NO" for now.

Remember as a kid much of growing up felt like those in authority around us were always imposing the big "NO"?  I felt that way.  No to this, no to that, no going here, no going there, no it isn't safe, no it isn't the right time, etc etc.  Sometimes life seemed more about what I couldn't do than what I could do, and somehow that really dampened my sense of adventure and even curiosity as to the possibilities of "YES".   This brings me to where I find myself a lot of the time today.  The looming NO festers and frustrates me to the point of my feeling small and insignificant.  Over the course of my illness with all of its limitations, I have been opressed with NO.   I can no longer enjoy some of my favorite physical activities like taking long walks, hiking in various terrains, and enjoying my beloved Irish step dancing.  I can't eat certain foods.  I can't stay up late or sleep in because if I mess up my routine, I am sure to pay the price.  Going to concerts with loud music and bright, strobing lights is out for sure. Even the movie theater experience is pretty much off limits except for a rare occasion.  You get the idea.  But most importantly, it is the people to whom I have to say NO that hurts the most.   Forever cancelling plans or asking kindly to see if they can be rearranged at the ninth hour is an all too familiar scenerio.   My dear family and closest friends "get it" and cheer me on and work with my ongoing limitations, but this gets old. I feel like a big disappointment and wet blanket to those I love.  However, my lovely and wise cranial sacral therapist reminded me to put it in the perspective of "NO, for now."   What a difference three words can mean---  NO.FOR.NOW.   Let's look at it one day at a time and go from there.  My days might not forever be filled with so many limitations and NO's.  It just seems so during this present time of struggle. 

This journey is teaching me about patience.  Is this an understatement or what?  How can I be more gentle and kind to myself?  When is it necessary to take an account of how I am truly feeling and impose a self-made NO?  There are times when my body either physically, mentally, or emotionally simply cannot carry on with what is being asked of it, and so, the only sensible and compassionate response is NO to anything further.  Simple.  Absolutely not!!  However, I am a work in progress through God's Grace.  The amazing and beautiful unfolding of actually choosing NO is that I am realizing it gives room for a greater opportunity for YES!  How cool is that?  I can enjoy another event or outing or some form of physical exercise if I allow myself to say NO when my body needs me to in response to a hard day. 

You may be in the midst of grieving over a loved one, caring for a sick or dying loved one, dealing with grave financial concerns, living in chronic pain and or depression, or any number of life issues that are burdening you with many NO's right now.  I understand how utterly devastating that can feel.  I would suggest trying to look at the perspective of "No for now" and breathe deeply and slowly.  Take it one day or one moment at a time and be gentle with yourself. Be open to accepting help if offered from someone who is trying to lighten your load because it could allow space for the greater 
hope of a YES.  Besides, it provides others the beautiful opportunity to offer their gifts in time of need.  

 Try and look forward to the next YES that God has ready for you just around the corner.  It is an exciting YES!  He loves us and wants to bless us.  

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.  

Friday, October 16, 2015

Everyone has a story

As the saying goes, "Everyone has a story."  Yes.  So true.  All our stories are unique and give meaning to life while here on earth.    When we share our stories with one another, we can find a common bond that helps hold us together as we journey through life.  I think this bond is called HOPE.  Without it, we simply cannot live.  Our purpose fades.  HOPE gives us the energy to wake up, get up, and show up for our lives day after day after day.  So, in the midst of my daily struggles and messes and quest for re-purposing my life as a middle-aged woman with a newly diagnosed chronic illness, I thought maybe having the courage to share "my story" would offer HOPE to at least one other individual on this planet. 

My story is just that.  My story.  It has many of the same characteristics as does yours, I am sure.  It involves struggles, achievements, highs, lows, doubt, faith, pain, healing, darkness, light, loneliness, and love just to mention a few.  Hopefully, our stories will connect on some level that might offer insights as to how we can move forward in our daily living, especially in those times when we may be feeling small or just plain stuck in a rut.  Life is messy.  Life is hard.  Life is beautiful.  When we can journey together and open our hearts in an authentic way, the beautiful part becomes more apparent and, perhaps, the hard and messy can be easier to bear.  

I wish to tell my story and write my blogs through the lens of my life long faith while embracing the glorious mystery of God's Grace.