Living Well When You Are Not Well…

There is a significant measure of strength one must ascertain in order to withstand the elements of daily life when living with chronic illness.  The mental fortitude one must tap into takes great aptitude as well as sheer will.  You never know the depth of strength you have within until you have no other option but to fight with all your might.  It’s not something that can be manufactured or put into words.  It’s not tangible, but that does not make it any less authentic.

Chronic illness takes on a life of its own.   It’s ellusive, yet always there.  It wreaks havoc on any plans or schedule.  It’s not something you can prepare for or predict.  It just is.  You are merely an unwilling participant trying to navigate the unpredictable waters of chronic illness.  Much of the time it comes without warning and wears out its welcome.  The battle between our body and our mind is continuously raging.  I believe there is an innate desire within each of us to pursue goals, to succeed, make future plans, and always be moving forward.  I don’t mean to the point of missing out on the present, but rather progressing in life.  We see it as linear, a timeline if you will.

Now for a moment imagine the time line transforming into something unrecognizable. It’s like a foreign language without a translator.  The goals you once set for yourself become distant and unrealistic. A chronically ill person has to completely change their mindset.  Chronic illness by definition means that unless a cure is found we will live with debilitating symptoms for our lifetime.  Not only that, we will mentally have to have the fortitude to press forward when everything in our body says, “Just give up.  You will never get better anyway”.  It is waking up each morning and CHOOSING to live the best life possible.  It is finding ways not to let go of your dreams and desires, but to find a way to reconcile your daily reality with those dreams.  And honestly, some of them aren’t compatible.  We have to make new goals and aspirations.  And that’s not always a bad thing.  I have found I can have the same zeal for my modified goals as I had before my illness.

I share this because if you have never lived with a chronic illness or circumstance, it’s nearly impossible to understand.  Had I not experienced it firsthand, I would have no idea the mental challenges that accompany the physical manifestations of numerous chronic illnesses. It is a completely different world than how a healthy person lives.  I know because I have been on both sides.

I lead a completely different life now.  Before I would hop out of bed and run 4-6 miles before 7:00 a.m.  I now have to stay in bed a bit longer to allow my body time to acclimate to standing and walking.  Two minutes on the treadmill is a workout for me.   There is also the mental component where we are bombarded with the nagging question of, “Will this ever end?”  At first, it’s easier to believe there is an end in sight, but after many years that hope is challenged greatly.  We each find places of inspiration.  I have always found mine through my faith.  It is the only reason I stand with hope to this day after 11 long years of illness.  I do believe there are better days to come.  I do believe I will see healing in my body in this lifetime.  But, being deeply rooted in my faith does not exclude me from having those heart wrenching days and even weeks of being mentally broken.

It’s one thing to be told what you have is incurable.  But it’s another thing to fight and conquer the incurable.  Believing there has to be more answers out there somewhere, and yet be completely exhausted and fatigued trying to find them.  Incurable…chronic…I hate those words.  But, they have to be acknowledged to move forward.  In a world where a pill is supposed to stop symptoms and heal disease, one of the hardest aspects of living chronically ill is explaining what that actually means.

I felt so much was taken from me with POTS, but I decided it would not take everything.  I was not going to live life as though I was already dead.  It’s not a death sentence.  Even though at times it feels like it is.  I know it isn’t easy and some days the challenges of our health seem endless.  But please know, there is hope!  I believe we will see a cure in our lifetime.  I believe some will be healed without medical intervention.  Our bodies are beautifully complicated and intricate.  They are always trying to heal and become balanced. This is not the end. 💙









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