Letting go of daylight

As I sit looking out the window at the gorgeous leaves blowing everywhere on this truly blustery day, I am reminded that in a few short hours it will be time to turn the clocks back one full hour which will take us out of DST—-daylight savings time.  I will bid fairwelll to the longer, fun days 

of light and welcome in the longer days of darkness.    

I pause to catch my breath, close my eyes and inhale deeper and slower.   The cycle of the seasons again repeat themselves over and over.   I desire to hold onto Summer, but I still look forward to the eye catching beauty of Fall and all its splendor.  

The last of the leaves are blowing off the trees and creating a giant colored carpet on our lawn. It is beautiful.   Heading outside for a walk, the leaves crumble beneath my feet, and I can’t stop taking pictures on my cell phone.  I want to capture every last bit of color possible before the trees become bare as the starkness of Winter approaches.   

Nature will unfold as it always does in its proper time.  It is well to praise our Creator for His handiwork that He freely gives us for our pleasure and a gift of His love. 

Each season has so much beauty and joy wrapped up in it.  Let’s take time each day to look for the miracles especially when life seems hard to bear. 

Get some good rest with that extra hour and hopefully you will be ready to embrace the shorter days of sunlight.  

 My body likes the longer, quieter evenings because some days I feel exhausted from trying to tread water. I can tuck in early and read or write or—-yes, watch my favorite Hallmark movies!  Who doesn’t love that?!  Lol.    All is well. 

“Autumn is a second Spring when every leaf is a flower.”

                Albert Camus 

Summerfall

I discovered a new way to describe my favorite season.  It is Summerfall.  I am cheating, perhaps, because I don’t want to choose between the two.  Okay friends, don’t judge me here. They both give me pleasure while decorating, cooking, dressing, and enjoying numerous activities each has to offer.   I feel strongly connected to both at the moment. 

Summerfall is a kind of in between place.  While September and into early October tend to be mild and sunny weather (at least here in CT) , I take advantage of enjoying summer flowers in my window boxes, walking the boardwalk at the beach, wearing sandals while sporting a nice pedicure, and grilling meals outside yet.   I feel as though I have permission to stand a bit longer outside in the evenings and gaze at the night sky listening attentively to the peepers in the pond. 

For me, this was the first summer in eight years that slowly but surely I was able to tolerate increased activity with  chronic M.  I conquered more fears and headed out the door ready to face some special events that I wouldn’t have even attempted before this. I was determined not to constantly let M have the final say.   “He”rode in the car, but “he”was not in the driver’s seat! I was! 

As much as I love to bundle up in sweaters and hold a mug of hot coffee or tea, I hesitate to fully bring myself to embrace the next season because it does mean letting go of Summer. But ready or not, here it comes.    Just like that.   Residing in New England allows for all four distinct seasons to be observed which I like.  I couldn’t live somewhere where the majority of the year was really hot or cold.  Not for me.   But now I want to add a fifth season just for fun! 

Another reason I may be holding onto summer a bit tighter is because it bestowed physical and spiritual gifts which were unexpected and delightful. God surprised me with little miracles that only I could see and feel but were no less significant.   I have been holding these fragile gifts close to my heart. These gifts and miracles mark a Summer to remember, but just because Fall is almost here does not mean that these gifts and blessings will disappear.  Not at all.  I shall open my hands and heart to what beauty is yet to come.  

Instead of always thanking God for the miracles and gifts He already bestowed, I think I need to try and thank Him for the ones that are on the way.  The ones that I can’t see just yet.   It is with sincere humility that I do so. 

I will eventually turn in my flip flops for boots (and boy do I LOVE my boots!), dressing in layers, making everything pumpkin I can think of and decorating with lots of Fall color. Oh yes, picking apples too!

Slowly I am easing my way into the next season, but for now, Summerfall feels safe. 

Do you have a favorite season?  If  so, what makes it special? 

What kind of activities do you enjoy in the Fall? 

Do you have some special memories from the Summer that made you happy? 

Maybe you would like to  join me in experiencing Summerfall! 

A mountain vista

A long overdue get-a-way was how my hubby and I of thirty years spent our anniversary.   We could hardly believe this was the first, real small vacation we took that focused on just US.  All of our other times away involved kids and family or work commitments.   We would always get lost in the shuffle somehow and then return home and feel as though we didn’t actually focus on “couple time”. Let’s not forget traveling to visit special doctors and hospitals which totally put the yummy icing on the cake.  Geez...

We were blessed this time to visit friends whom we haven’t seen in many many years.   What a delightful treat!   We even took a day to make a special drive to peek at where I first lived after college and had my first nursing job.  From there, we ate lunch with dear friends and even saw our priest who married us.  He gave us a special blessing which will hopefully carry through for another thirty years!   The afternoon was spent with fond reminiscing and laughter.  Our hearts were definitely lifted up and filled with joy.  

Praying that my head and body would hold up through the next part of the trip, we continued down to VA to visit more friends whom we haven’t seen in years.   What an absolute delight.  We stayed at their bed and breakfast and were royally spoiled.  I wish to give a shout out to Windridge Manor near Lynchburg,VA.   Kelly and John Heckman are the owners, and they truly have an amazing place!  They focus on it being a wedding venue, but we were able to stay a few days as guests.   Oh.my.gosh.   The home and property are stunning.   

During our visit, I actually saw my husband RELAX.  Yep, you read it correctly—- RELAX.  He breathed in and exhaled slowly and purposefully for those few days.  Woo hoo!  We enjoyed a combination of sitting and rocking on their balcony as well as some sightseeing around the area.  The weather was extremely hot and humid so that limited our time outdoors.  No problem.  We sat ourselves down in their manor and just chatted.  We intentionally leaned into one another, listened, and shared life together.   How wonderful is that? 

Life slowed down a bit for those few days not only because we didn’t have a rushed agenda to fulfill but also because we could barely move after breakfast.  I am not kidding.  Kelly prepared a breakfast fit for a king and queen!  It was enough food to last us all day!  Unbelievable you all!  

Too funny and totally a “Kelly thing”!  

A real gift was my ability to take each day, check in with my head, and move forward with some plans whether they be sightseeing or taking it easy at the manor.  I believe my new medicine is slowly helping decrease some tough M attacks.  I am more able to abort them with the necessary meds and not be completely flat out in bed.  Praise God.  Gently stepping back into my life is refreshing to say the least. 

Michael and I talked about our thirty plus years together and we couldn’t believe how fast those years have flown by.  Unbelievable really.  We talked about the good, the not so good, and all the in between.   Most days consist of the messy middle and the normal in between. These past eight years of my illness have been a real difficult challenge to our marriage in many ways.  But—-we are better and stronger for it.  I guess God really does know what crosses we can bear only WITH Him. He placed the right people in our path to help us along the journey.   And He still does.   

September is a time for new beginnings and a new season.  Change is all around us. Some of it good and some may be more challenging which could be tough to navigate. It is not all sunshine and rainbows. I get that.  I really do.  Physically my body has a rough time with more painful days slipping into another season.  I will prepare as I can and then go with the flow.  We all realize that the hardships don’t get easier just because we transition from summer to fall.  Things take time to work themselves out.  Hopefully, day by day, some of our longings and desires will come to fruition.  

Michael and I are extremely grateful for our mini getaway. We love our anniversary being Labor Day weekend because it is in between Summer and the beginning of Fall.  It is the letting go as well as the receiving of new gifts and opportunities.  

Friends, I wish you a smooth transition from Summer to Fall, and I hope you are looking forward to new adventures and opportunities.   May the hot apple cider, pumpkin loafs, and the changing of leaves bring peace and calm to you.  

Time for another transition

A few days ago I found myself on a loud and crowded airplane traveling from CT to the University of Illinois at Urbana Champagne to help get our son settled to begin his new adventures in graduate school.  Just a few short months ago I traveled by plane to Austin,Texas for his college graduation!  WHERE HAS THE SUMMER GONE?!  I know I have asked myself this question as long as I can remember, but it truly seems as though my favorite season of Summer whirls by quicker and quicker every year.  My bare feet have barely spent time in the sand.  

Sitting on the plane traveling to the Midwest, I smile and breathe more peacefully because I feel more confident and less anxious about traveling this time.  I have had two past experiences of practicing the “M drill” and what that entails to survive my excursions.  Actually I don’t just want to SURVIVE them, I want to THRIVE in them.  

The biggest comfort this time was being able to enjoy the in flight TV which suited me perfectly.  I got to put on the head phones and watch my favorite Hallmark station, and I actually saw a movie I hadn’t seen before! Win Win!  This took up practically the entire flight time.   I was well medicated for my M and I felt like I was a bit in la la land anyway.  

The real challenge came when I had to navigate Chicago Ohare airport.  Unbelievable.  To say it is huge and busy and noisy is an understatement.   We had a four hour or so layover so that was a real picnic.  NOT.  While the shops were fun to browse and the eateries kind of fun, that all wore off quickly.   I was only amused for about an hour, and after that, I wanted to lie down for my nap and get quiet.  I would walk around, then sit, then stretch and back up to walk again.  Rinse and repeat for several hours.  I had a few good cups of coffee as well to keep going!  

People watching at an airport is quite the sport.  I usually wonder where they are going, from where they came, and what is their particular story.  Nowadays everyone is practically on their cell phones constantly and they barely look up to see where they are walking.  It is kind of dangerous, actually, in a busy place like an airport.    I kept my earplugs in and tried to block out at least some of the overbearing volume of all the sensory overload.  I kept grounded and focused on keeping my body and mind calm.  This time I was able to do so much better and easier than my trip in May.  I realized that I have been preparing myself well for how I have to manage and navigate traveling with chronic M.  

This experience of moving our son to another place so he can start his new adventures marks another momma transition.  He is the youngest of four sons, and I truly can’t grasp the reality of how he arrived so fast to this present moment and opportunity.  He has always been one determined and independent young child who grew up into one determined and independent young adult. He has a long road ahead of him with his program.  God bless him. 

Our home this summer has been full of life, crazy chaos, joy and laughter, and difficult messes as well.  Every time I try and “prepare” for the next transition, I realize I am left floundering and unable.  The transition just happens, and the key to coping is just going with it and adapting as best as possible.  This is a valuable lesson I have learned living with chronic illness.  By accepting what is and not fighting against it all the time, I allow space for the adapting and adjusting.   As the tides grow bigger and scarier, I learn to adjust my sails and continue on.  

Turtle crossing

“Slow and steady wins the race” says my kind and compassionate headache specialist.  He senses my frustration and impatience when it comes to living with and managing chronic M. He offers wise words that validate my feelings while also bringing hope to my situation.  For eight years I have been ingesting and injecting medicines, vitamins, and supplements galore.  I also wear non-invasive medical devices on my head that make me appear as some alien being on a Sci-fi show.   I do anything I can to help myself cope with all of it.  

In addition to the western medicines, I incorporate other alternative disciplines and therapies to aid in the whole treatment approach to healing.   I find it all to be very helpful.   I am deeply grateful for my wonderful and talented therapists who walk this journey with me. However, most days I just feel plain TIRED and SLOW.  Most of the medicines I take have nasty side effects which really zap any and all energy I may posses.  If it isn’t the pain cycles from the attacks then it is the meds that keep me kind of loopy and lethargic.    I NEVER get enough sleep or rest to feel I can keep up with the rest of the world.  

This is where I know my Dr is trying to show me that by slowly introducing new treatments over time that there is no one quick fix and that it is over the long haul I need to remain patient.   This being said, I mentioned in my June blog that I was a candidate to try the brand new Aimovig drug made especially for the treatment of migraines.  Hallelujah!  Well, I gave myself the first injection a little over two weeks ago, and I am seeing “some”results.  This is a preventive medicine that works over time and may take months for noticeable differences.   Again—-SLOW and steady wins the race.  

About a month ago, I was in my car traveling on a back road behind our middle school and I noticed a rather medium sized turtle trying to cross the road in front of me.  I stopped and waited until he safely reached his destination with his very slow and steady pace.   There were no cars behind me so I was not holding up traffic.  As he crossed, I thought about myself.   I feel OLD and SLOW most days.  I can’t exercise at the pace I used to.  My gait for walking is much slower.  If I go from sitting to standing I need to be careful or else I will get dizzy and faint like.  As I see my friends who are my age busy with keeping in shape, sometimes I feel frustrated and discouraged at my limitations.  However, if I look back on my journey, I can now see just how far I have come. 

 I decided to wait for that turtle because I respected his pace and purpose.  My tribe does the same for me too.  How grateful I am.  

I am being humbled by slowing down.  I actually see and hear and feel more of God’s magnificent beauty right in front of me simply because I am not sprinting by it.   I used to be more like the hare in the famous fable of the tortoise and the hare, but now I am certainly more like the turtle.  I guess this isn’t so bad after all.  

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. “.        James 1:12 (NIV). 

This is the ultimate race; I hope to finish this one well.   

Help wanted

June is coming to a close, and I have been active and engaged with migraine advocacy and awareness.  The work is fulfilling and it is personally uplifting to know that I can reach out and help others right from my own home.   The availability of online communities which offer support to one another and validate real life experiences is not to be underestimated.  Many of us lead quieter lives which keep us more at home some days or for extensive periods of time depending upon our level of disability.  It is a fine tight rope to walk and balance the inside, quieter world with the louder, outside one.  

 

At the present moment, I am eagerly awaiting the new drug I mentioned in my last post.   It should soon arrive and I am actually looking forward to giving myself another shot!  Lol!  The things we desperate chronic migraineurs do for relief.  Well, this is just eagerly grasping for any and all reasonable options.  This is called HOPE.   

As my purple-streaked hair fades, my work does not.   There is much more to be done.  I will continue to bring awareness and offer my story of hope and courage that it may benefit others.  Hopefully, they may discover strength and insight to move forward in their own journey.   

I think it is important to find our own unique calling and pray for strength and wisdom to carry out that calling.   It is crucial not to compare with others.  We are better off when we connect and not compare.   That is how we best help one another.   I trust that the Lord will always equip me for the work He is calling me to do.    I know He will.  

Without this particular trial, I would not be who I am in Christ today.   My daily walk with chronic M teaches me to trust and surrender ALL to Him.   Some days are really ugly and messy. Some days are pretty good and colorful.    Some days are in the mixed up middle.  And , that’s okay! It really is.  

Friends, thank you for all you do to lift me up and carry me when I can’t walk another step.   It is your love and support and strength that give me the power to move forward.   God bless all of you. 

In light of all the hurt and wrongdoing and misunderstanding and out of control egos today, let’s take the time to notice others who may need our intentional presence of love and listening.   May we provide a safe place for their heart and soul to land without judgement.  There is no place for arrogance or bullying.  There is only a place for compassion.  

Summer is here!

Summer has officially arrived in all of its glory.   After our crazy “Spring”, I think we are all ready for a change.  I, for one, am excited about stepping fully into this season which is full of warmth and light.  Nature is so alive and colorful and bearing much fruit. 

Ever since I was little, I longed for summer days just hanging out with friends participating in carefree moments that took a break from academics and so called structured learning.  There was always something to do, but better yet, there was always nothing to do.  As long as the day ended with eating juicy slices of watermelon, pondering the ever evolving night skyscape,  and catching fireflies, then all seemed right with the world.  

My days sure look a lot different from my childhood memories of feeling carefree due to living with chronic migraine disease.    I used to LOVE being in the sun at poolside or the beach.  I could take long walks in the heat and sun and never think a thing of it.  Now, I need to be very mindful of my stricter boundaries on navigating my summer days.   

Most migraineurs experience photosensitivty from both the sunlight as well as many inside bright, fluorescent lights, and the new LEDs are terrible!  I go nowhere without my shades and don them wherever and whenever deemed necessary to withstand the unpleasant environment.  Big box stores are really a no-no for me more than 15 minutes.  Frequently I am also wearing my baseball cap with a nice visor to help cut glare as well.   

As far as the heat, I don’t tolerate that well anymore.  I stay mostly in the shade if possible and keep cool inside during the real heat of the day.   By evening time, I take walks with my hubby on the boardwalk or in our neighborhood while  enjoying the beautiful summer sunsets.   It is all good. I live and move with great gratitude for every second spent out of a dark room too sick to move.   

So here is to eating juicy watermelon and watching sunsets and catching fireflies!  Here is to gathering for picnics and sharing life with one another! Here is to choosing joy and offering kindness to the world around us.  

Here is to wearing shades today in solidarity for migraine awareness 😎😎

May everyone have an awesome summer!!