SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Sixth of a series)

 SOCIAL ISOLATION 

Charles Dickens referred to "isolation" as a "slow and daily manipulation by the brains' mysteries" which, he concluded, "is far more destructive than any torture to the body." Many studies confirm Dickens' observation attesting that the psychological changes derived from isolation are many and very damaging ranging from depression to psychosis.

I can righteously say that I was on top of the world by the time I reached the age of 50.  My job as Office Manager of a successful Health Managed Care Company provided me the money to live comfortably.  My second job as a social events reporter in the most prominent Hispanic newspaper circulating in Miami added the glamour. Everybody appreciated seeing their pictures and events published in my column. Everybody wanted to be my friend…everybody wanted me at their parties. I had become a social butterfly!  

I did not change my life pace the first years after I was diagnosed with #Miyoshi myopathy.   Rather overwhelmed with gratitude to God for the good luck that allowed me —not only to enjoy so many years of normal living but also, to have gotten "one of the mildest forms of muscular dystrophy", (according to the doctor that explained to my husband and me what Miyoshi myopathy was), I kept working as usual. 

Despite its mildness, the Miyoshi myopathy had me walking with a rollator after only two years after being diagnosed with it.  After five years, I had to stop driving. Which consequently made me stop working outside my home. In twelve years, I could not clean my home and by the thirteenth year, I had to stop cooking. Today, 25 years after being diagnosed with the "mild'  Miyoshi myopathy, I can barely move the tip of my hands. I am now a quadriplegic completely dependent on somebody else to help me live. And yes, you guessed it, I am also totally ISOLATED!   

I mentioned the above data so anyone reading this post will learn that I am not a weak whining person. On the contrary, I picture myself as a courageous individual. Courageous in the sense that my initial purpose has been to be strong, to inspire courage, and of course that when anyone expects to do that, it has to start by setting the example.  I have tried. I tried for many years. But now I must admit that I am exhausted.    

BEING A QUADRIPLEGIC CREATES TREMENDOUS STRESS ON A PERSON

 June 17, 2021

I am getting very tire of having to fight so fiercely to achieve the things I need.  Let me explain why so you will understand better: for instance, the past two nights I slept only 4 hours in spite that I was in bed for 7 hours.  Since I am a quadriplegic, I have to be repositioned at least every 5 hours or the pressure points will give me wounds. My husband has been my sole caregiver, but just a few months ago, his cardiologist diagnosed him with Congestive Heart Failure. Also, my husband had stents placed in his Aorta vein four years ago.  So I came to the conclusion that we now need extra help and hired 2 caregivers.  One, from Monday thru Thursday, and the other one Friday & Saturday. Which means a lot of money!  This has me extremely upset because I don't know if I am going to have the money to pay for services like that for a long time.  

The stress of being a quadriplegic creates on the person, as well as on their loved ones,  tremendous anxiety.