LIVING IN CAPTIVITY

Yesterday my husband and I went to the Audubon Center for Birds of Prey.  This center provides rescue and rehabilitation of injured raptors including falcons, eagles and owls (my favorite).  We saw many with broken wings and other bones and a couple with vision impairments.  Most were in cages but some were tethered to a perch so they could not fly away from the protection of the facility.  Not being able to survive on their own, they were being held in captivity.

This reminds me of how I feel at times, living with multiple chronic illnesses.  I feel I am caged by my illnesses because I cannot function the way a normal person’s body functions.  The limits on the food I can eat due to Diabetes and the amount of energy I can expend in one day due to Psoriatic Arthritis and Fibromyalgia keep me confined.  I am not free to do as I please because my body cannot function on its own.  I have to manually regulate many of my body functions with medication, diet and managing movement.

Being ill my entire life, I have learned how to relieve some of the feelings of restriction:

  1. Acknowledgement:  I had to acknowledge my emotional, physical and mental state.  I had to recognize my feelings of grief and sadness about being sick.  Once one grieves the loss of being ill, it becomes more real.  Once the grief was resolved I was in a better mental state to deal with the physical issues.
  2. Identify what needs to be changed:  I had to accept the way I was functioning needed to change in order for me to manage my illnesses more effectively.  For example, I can no longer do a long list of chores in one day.  I now have to break up my activity in short segments.  In other words, I had to examine what aspects of my life were being impacted by my illnesses and make changes.
  3. Make one change at a time: I gradually worked on each aspect of myself taking one step at a time.  Once I dealt with my emotional state, it helped other aspects of my life.  Then I was able to work on making changes to my daily activities which help my overall health and energy levels.
  4. Engage in a new adventure: Learn something new, join a social group, volunteer in the community.  Engaging more with others and helping the community create a sense of purpose which generates hope for the future.
  5. Reward: As changes are being accomplished, give yourself a reward!  It can be anything, even a small moment of self-care.  For me that means a manicure and pedicure!
  6. Share your story: Share what you are going through with others.  You never know what you can learn from someone else or what they can learn from you!
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3rd QUARTER UPDATE

Wow, the end of the third quarter of the year!  This year is flying by and I am still working towards my ultimate goal of the year, to exercise regularly.  I have taken steps towards that goal so I guess I have taken some action.  I did buy a balance board and I do use it on my breaks at work but just on a regular basis.  I also have gone to a few Yoga classes but I need to find one that fits my schedule.  This week I am going to try a new facility that is close to my house and has classes available during appropriate times for me.  Hopefully this will be the place for me!

One thing I have learned about making change is it takes time.  I think the main reason I don’t exercise is because I find other things to do rather than take the time to exercise.  My old story is I don’t have time or energy to exercise.  My new story is I am a healthy person who is energized by exercise and makes time to do it.  This new outlook will help motivate me to follow through on the plan.  In addition to motivation, I need to eliminate the excuse that I don’t have the time.  By searching different options, I have finally found a place that does work in my schedule.  Now I have no excuse not to exercise.  I need to continue my vision of being a healthy person to accomplish this goal.

As far as my overall health things are better except for some stomach issues.  I had a couple of MRI’s and an endoscopy done in the past couple of months.  The doctor told me my stomach doesn’t work right.  This could be a complication due to my other medical issues.  I will find out more when I get the results of all the tests in a couple of weeks.  Until then, I will deal with things as they happen and continue to work towards my goal of being a healthy person.  Well, as healthy as I can be.

MY NEW STORY

At the beginning of 2017 I chose my word for the year to be “action”.  This was going to be the year to act on making the changes necessary to create a balanced life while living with chronic illnesses.  I must alter my approach to the challenges of life in order to achieve my goal of a stable life.  But, change is hard.  How do I make the changes become my new normal?

I discovered the book “Live the Best Story of Your Life: A World’s Champion’s Guide to Lasting Change” by Bob Litwin.  The author is a champion tennis player turned business coach.  The key to this book is changing from one’s Old Story to a New Story.  One often creates a story based on the comments and reactions one receives from parents, friends, etc.  One can misconstrue the responses from others creating a distorted perception of self.  This made me think about my own Old Story.  In my past, I viewed people’s constructive criticism of me as negative which destroyed my self-confidence.  These false ideas took over and for years I continued to engage in negative self-talk, like an annoying parrot on my shoulder.  My Old Story was filled with self-doubt, lake of self-confidence, lack of discipline, low motivation, and feeling of inferiority to others.  I didn’t realize until reading this book that for the past few years I have been working on changing my perception of myself.  I had to stop listening to my Old Story and start creating a New Story.  In my New Story, I am confident about what I know, am disciplined, motivated to stay healthy, and feel I am valuable to others.  The story I had been telling myself for most of my life was not real and was holding back from the person I want to be.

Now that I have discovered what I want in my New Story, I can begin to make behavioral changes in order reach my goal of a balanced life.  Changing my self-perception from “I can’t” to “how can I” has opened my mind to accept change is possible instead of hard.

JUST FOR FUN

One component of my 6M method to maintaining a balanced life with chronic illness is motivation.  (The other components are medication, movement, manage, meditate and maturate).  Being creative is one way I motivate myself.  It utilizes all parts of the brain and I am encouraged when I finish a project.  Here is an attempt at acrylic painting.  I am definitely not Michelangelo but it was fun and relaxing making the attempt.

Boat

 

KEEPING FAITH IN THE FACE OF CHRONIC ILLNESS

It is sometimes difficult to continue living a hopeful life while enduring constant affliction from my multiple chronic illnesses.  When things get most challenging, it is my faith in God that gives me hope to continue in life.  Some people ponder, how can a person with chronic illness still have faith in a God that doesn’t heal all of one’s sickness?

My father survived cancer three times.  During his second battle, I asked him how he could continue to have faith in God even though he got cancer again.  He explained, “God does not promise life is going to be beautiful all the time like roses.  There are thorns on the rose bush.  We will get stuck by several thorns before we get to the rose, which is eternal life.  What God does promise is that he will stay by our side during the trial and help us through it.”  My father did get healed and was healed a third time from cancer.  He ultimately lived another 30 or so years and experienced a full life.

In the case of chronic illness there is no cure, one can never be healed of the illness.  Even though the illness will never be healed, it doesn’t mean that God does not provide healing.  Healing can occur in many others ways.  I have been hospitalized for Depression six times.  Each time I learn from the experience.  This has allowed me to accept my affliction and I am now able to manage the disease more effectively.  Had I not endured all of those challenges I would not be where I am today.  God healed my fears about my future, provided me strength to endure difficulties and gave me courage to move forward.

It is God’s promise of eternal life that sustains me.  Our lives here on earth are just a short time compared to eternity.  Our sufferings may appear to be long in earthly time but it is only one second in eternity.  This is what I always remind myself of when I start getting discouraged about living with chronic illness.  My suffering now is nothing compared to the glory I will receive in Heaven.  In Heaven there will be no illnesses, no hospitals, no medications and that is something to hope for.

DO YOU WANT TO LIVE FOR A CENTURY?

Last month my family celebrated my Cousin Raul’s 100th birthday.  It was a great reunion of over 300 family members we had not seen in quite some time.  We looked at old photos, took lots of new ones and shared a big Cuban meal together. It was quite a commemoration of my cousin’s long life.

This got me thinking, would I want to live for 100 years?  I don’t think I do.  My body is already quite tired of dealing with my multiple medical conditions.  I can’t imagine living another 50+ years. That would result in an incredible number of blood tests, medicine, and doctor appointments.  Of course maybe by then there will be some magical medical advances which would allow me to have a bionic body to rid me of my illness management.

During the party a family member gave a speech. He said the key to Raul’s longevity was that he stays engaged in life.  Raul has continued to remain an active member of a social club in the city where he lives.  At his reception, Raul accepted donations so light posts could be installed around the outside of the club’s building.  Even at 100 years old he is involved in the process of restoring a community.

I believe it is not the quantity of years one lives that matters, what matters is the quality in how one lives.  In The Bible, Ecclesiastes 5:20 states, “For he will not often consider the years of his life because God keeps him occupied with the gladness of his heart”.  Purpose is the key to having gladness in one’s heart.  God has given each person special talents and circumstances to share with others.  One should use these gifts to engage in life.  As long as one continues to seek God’s will, life will be fulfilling.

I often get weary of dealing with my medical issues.  Some days I feel like I cannot deal with all the daily activities of living while having to spend so much time on my health.   But it is my faith in God and my relationship with others that keeps me hoping for what is yet to come.  Whether I live another 50 years or just one more day, I will continue to follow God’s plan for me.  My purpose will keep me going through any challenges I face in the future.

CHRONICALLY TRAVELING

Recently my husband and I went on a beach vacation.  For most people packing is rather light for a beach trip.  You need t-shirts, shorts, bathing suit, sunscreen, sunglasses, flip flops, and a hat.  For the person with Diabetes and other illnesses it is a little more complicated.  To make it easier and more organized, there are a few items I use:

  •  A duffel or carry-on bag:  I take a separate bag to carry all my medicine and diabetic supplies.  In the bag I put my pump supplies:  tubing, extra infusion sets, reservoirs, and insertion device.  I put extra glucose monitor strips and battery charger for my glucose monitor.  In addition I pack extra AA batteries for my insulin pump.
  • Medimemo pill organizer:  I found this box on Amazon.  It keeps all the pills in a case that is easy for packing.  I put all my pills for each day.  I can also put extra pills such as Tylenol and anti-inflammatory pills.Medimemo 7 Day Pill Organiser Medi Dispenser
  • Insulin cooler:  This keeps my insulin cool while we are traveling.  This can be purchased on Amazon.

Insulin Protector Case Insulin Cooler - Blue

Even though it takes some extra packing, one with chronic illness can still enjoy a great trip to the beach!

 

 

Interested in joining a Chronic illness Support Group in Orlando?  Visit my Support Group page to register:  Support Group