Haunting Memories!

For those who suffer from some sort of debilitating chronic illness, the memories of yesteryear can be haunting.  The new life may have brought a plethora of limitations that make the old life seem like a candle in the wind.  Remembering, longing, and urning for what was lost can weigh heavily.  After all, it is a loss.  It might not be a tangible loss or a human loss, but it is a loss.

I've had to deal with this in several different levels over the past 4 years.  Before I became sick (4 years ago this month, actually) I had a very active, full, exciting life.  I exercised 6 days a week, played tennis several times a week, carpooled the kids, cooked elaborate dinners, volunteered, took care of 3 busy children, spent lots of time with my husband, designed and sewed my daughter's clothing, traveled, active in my church, kept the house, and so many other fun activities and responsibilities.

I became very sick, very quickly.  My sense of loss was not immediately devastating because I was too sick to care or sometimes even notice.  I was busy fighting and 'being sick'.  When you cannot even lift your own head off of the pillow, you really aren't focused on the fact that you can no longer cook a meal.  But when the dust settled, the great loss did set in!  And when it set in, it was devastating.  I remember feeling like the whole world around me had caved in, and I was left alone to try to come to terms with all that I had lost.

Learning to deal with the haunting memories of what life used to be has and will continue to be difficult.  I'm learning more tactics along the way.  Here are a few things I've tried to practice along the way, and maybe can provide others who suffer with new limitations or disabilities muddle through the storm.

1)  Cry, grieve, and let yourself be sad.......but don't stay there!  I remember a specific day when I realized all that I could not do.  I couldn't even sit in a chair, for goodness sakes!  I laid on the bed and just cried like a baby.  It was so good for my soul to let myself be upset, because I had guarded that part of myself.  After all, I've lost so much.  But after a few days of coming to grips with all that would never be again, I felt like I could move on!

2)  Focus on the new memories and the new way of life.  I've talked about how important this is before.  My new way of life is so different than the former life.  My focus has shifted, priorities rearranged, and my desires are renewed.  Before I could grab a racket and head out for a quick game of tennis to pass the time.  Now, I must be more creative, but keeping myself focused on what I can do...instead of what I no longer can do....will keep my head in the game.  So, what will I do today?  I decided to homeschool our youngest child over a year ago.  This was something I could do, and it shifted my focus off of the day filled with many limitations.

3)  Set new goals.  I don't know exactly how much function I will regain completely.  So, I set very small and attainable goals to work towards.  Sometimes I've had to go back and readjust them.  I had hoped to be walking 2 miles a day, but that's not in the cards for me (at least not now).  So, my new goal was to walk the 1 mile 4 days a week, instead of 3 days a week.  When that becomes easier, I can reevaluate.  I'm not going to be the same woman I was 4 years ago, but any little gain can bring about a renewed strength.

4)  Build up those healthy walls and boundaries.  Nothing can be more devastating to a mother than the thought of disappointing her family.  This makes the loss of abilities truly a nightmare.  This has been my personal biggest obstacle for tackling the haunting memories!  So, I put into a plan of action the crafty art of building walls and boundaries to protect my emotions, keep guilt at bay, and leave disappointment in the dust.  That doesn't sound good, but it is!  I KNOW what I can and cannot do anymore.  The guilt, pressure, expectations, and demands have to take a backseat.  I would continuously beat myself up if I didn't protect myself.  I have significant physical limitations.  I'm no longer the volunteer mom, the carpool queen, or the party guru!  I cannot live in the past.  How do I do this?  I am prepared mentally.  I do not put myself in these positions anymore.  I cannot be the mom who comes to the rescue for the class bake sale.  My family, kids, husband, and myself know that we must put boundaries, and it has made all the difference.  There is not constant disappointment on all our parts. We know I cannot....and that has made life more bearable.  It was so difficult waiting and watching and planning....just to see me too sick to do, be, go, become.  Of course, not everyone can appreciate your position or understand your illness, but this is for you!  Prepare others, let them know your limitations beforehand, have a wing-man, and leave the expectations at the door.

5)  Guilt no more!  Along with the memories of who you were.....comes that spoonful of guilt for not being who you were.  I think moms express this the most.  It goes along with number 4.  I wrestle with this one often , as a wife and as a mother, even on my best days.  Everyone remembers the 'old' you, too.  It's also their loss.  For me, I've lost so much of who I was, that the guilt can be overwhelming.  I've learned to talk about it openly.  I found sometimes, the guilt is something I've harnessed myself.  Just like grieving, you cannot live there.  The emotion isn't going to go away, but you don't have to wallow in it.  Shift that focus onto someone else....I have found it really hard to hold onto the guilt when I'm focused on making someone else's life happier.

6)  Remember with joy!  I'm choosing to be thankful for the years, the memories, and life I once had.  I was blessed, and I will remember all of those years with much joy.  As I share the stories, a tear or two might roll down my cheek, but with gratefulness I will remember them!

7)  Pray (or do whatever you do to feel connected with your maker).  I know these feelings are normal. There is a great longing to be who I was!  One of the easiest things for me to do is to just stop and pray.  I sometimes cannot handle the bundle of emotions that goes along with the memories.  After all, I did call the piece 'Haunting Memories' for a reason.  Just this week, I threw up my hands and simply said:  "God, please give the strength to move past this, and to remember what I'm living for today, and not living in the past."  Maybe just sing a song to turn mourning into dancing....just maybe not "Memories" by Barbara Streisand.

"Weeping may last for the night, but joy comes in the morning"

ANNIVERSARY: Sorrow into Dancing!

March 2011 was a month I will never forget for the rest of my life.  A seemingly normal young mother of 3, ventured south on a vacation just as she always had each spring break.  Melanie played tennis several times a week, exercised 6-7 days every week, and enjoyed being active.  She sewed and designed many of her daughter's outfits.  Cooking was one of her favorite hobbies.  She still had a toddler at home, but the two older boys were now in school after being homeschooled, and she was awaiting kindergarten with gleeful anticipation for her first year alone since her son's birth in 1999.  She was active in her church, friendships, and with her family.  Her husband and herself were inseparable and were loving each other and life truly to the fullest.  It was going to be a year to remember!

THEN....................................................................

If you have read my blog at all, you know the 'year to remember' ended up being a year from hell....that  would be followed by 3 more years even more intense, more sinister, and more devastating.  Over 2.5 years bedridden, in a wheelchair, and unable to even stand for more than 90 seconds at one time....I'm looking back at my 4 year 'sick' anniversary.  I could have never imagined that this scenario would become my life.  I've come close to the grave more than once, gotten a pacemaker in my 30's, been to many hospitals all over the country, been sick every day non-stop for years, knocked out teeth, passed out more times than I could even count, received revolutionary medical treatments, told to get my affairs in order, baffled doctors even at the Mayo Clinic, been so sick for months I could barely lift my head off the bed, received in-home IV infusions, been too sick to even walk myself to the bathroom or brush my own teeth, unable to leave the house for 6 or more months at a time, missed years of my children's lives, cried for days in unrelenting pain, and so many, many more! (and that's just the physical anguish)

BUT............................................................................

All of that is what I've had to endure and MADE IT THROUGH! I love that saying that I see from time to time:  "My track record of getting through bad days is still 100%".  However, this anniversary is going to be much more bitter-sweet.  You see, I'm also having a NEW anniversary this year.  While this week marks the 4 year point of this painful journey, it also marks the ONE YEAR ANNIVERSARY OF NOT HAVING PASSED OUT!!!!!!!!!  (For those of you who have not followed my blog, I could only stand for 90 seconds to maybe 3-5 minutes before I would lose consciousness EVERY TIME!  Because my autonomic nervous system has failed, it cannot keep the blood to my heart and brain long enough for me to remain postural)  Without a rhyme or reason, the last month of March was the VERY last time I lost consciousness..........(excuse me while I do a little dance at this point).  Of course, I do not stand in one place very long, don't keep my legs down much, or try to run around.  I'm sure I could trigger the response, but I'm able to LIVE within these parameters much more easily.

I can cook, walk, drive a little, exercise more, take care of myself, FINALLY care for my family, do some shopping, take myself some places, and so much more.  Yes, I have crazy limitations that would devastate most people, but they are nothing compared to the life I lived just 6 months ago.  I still have immense discomfort, pain, gastroparesis, many dizzy days, severe hypoperfusion, cardiac conditions, and the list goes on!  But I am WALKING....I am celebrating....I am living!!!!  Gosh, I'm so blessed!

SO....................................................................................

While I did pause for a moment to look back at the 'sorrow' of my 4 year anniversary, I can't help but to 'dance' with my new 1 year anniversary.  Much has been lost, but also much has been given.  I'm not the same person from 4 years ago, but I am blessed, thankful, grateful, and joyful.  I'm in complete awe of where this journey has taken me, and that I continue to get back up each and every time (not of my own strength).

I wish that you might also find a way to turn your sorrow into dancing today!  We all have different life experiences that were meant to break us......but in turn, made us stronger!  Let's all DANCE it out, today!

Back in the game!

Well, the holidays and most of the winter are now behind us!  I'm still playing catch up from the busy season and my recent trip.  I thank everyone who reached out during my little 'hiatus' from the blog.  I appreciated the love, notes, emails, and cards.  I will slowly be getting back to writing more about living life with chronic illness and include an occasional health update from time to time.

This winter was certainly a roller coaster for me and my health.  I had many wonderful days, filled with much joy and happiness.  I enjoyed the holidays and all that comes with them.  I also had many difficult days.  While I'm 10 times better than I was a year ago, it hasn't made the rough days any easier.  I keep telling myself that the really bad days just make the good days that much sweeter.  It's very true.  But the body sure does grow weary of the pain, the limitations, the sick feelings, the emotions, and the let downs.  I pick myself up each and every day, even when the days seems dark!  I'm so grateful to have my family helping me through this difficult journey.

As many of you may know, I spent almost an entire month in southern California during the month of February with my daughter.  We took this trip for medical reasons.  We wanted to try to jump start my body back into the rhythm of last August when I was feeling amazing!  We also know the snow and bitter cold can make life more challenging here in Indiana when you are chronically ill.  We wanted to experiment with climate changes, as well.  Because I cannot do much, physical activity is limited greatly in the cold months.  We also knew this would be a great time to renew the spirit, mind, and body!  I had slowly began to lose so much progress, we had to do something drastic to prevent a return to the wheelchair.  So, we set out on the drive across the country!

I am not a good traveler due to multiple physical limitations.  However, despite having to ride 4 days with my legs on the dashboard, I did amazingly well.  I'm still unable to sit normally with my legs down for more than 10-20 minutes at a time.   Ellie and I spent the next several weeks right on the beach.  We homeschooled, biked, walked, visited family close by, played, talked, read, and reconnected.  It was a beautiful time for us both.  However, the trip did not yield the desired effects.  I had a crash while there, but it didn't last as long as they typically do.  The time with my daughter was priceless.  My men back home did wonderfully without us, and we were delighted to be reunited.  While the results were frustrating, we felt like we did learn a little more and won't call it an entire waste!    Ellie and I are already planning another trip for next February...maybe Florida?!

I've grown more frustrated in the last few months dealing with such an unknown and unpredictable disease.  Knowing that I did have a few months of feeling great, it has only made me more anxious to find out the cause of the decline vs the incline.  The doctors still continue to not have any answers and continue to tell me its all part of the normal course.  I've grown more restless, maybe to my own detriment, to find a way to get better again.  The bad days are increasing in frequency, and my resolve has multiplied.

I'm learning more and more about how to live with chronic illness----despite my consistent denial that this is going to be my life forever.  Each day is brining me new opportunities to learn and grow.  I'm eager to share some of these new coping and managing skills of chronic illness with you.  After all, we only get one shot at this life, might as well make it amazing......even if I am going to be sick.