Friday, July 4, 2014

Rambling Thoughts Upon The Theme of Quality of Life - July 4, 2014 .

Summer is traditionally a time for vacations. A vacation is a break from daily life, isn't it? A break from the stresses and strains, a time of rest and recreation and maybe a bit of adventure on the side? Some stresses and strains, such as chronic pain and health problems, are impossible to truly get a vacation from. 

I came across a comment today, about a blog article by John Molot on the way that there is no vacation from pain by those who suffer from the endless pain of Fibromyalgia. The part of the comment that resounded with me was : "Too many do seek "relief" in suicide, or do consider it, since Quality of Life is so poor and frustrating. "

The comment that I added was: "When every day is an exercise in futility, filled with exhaustion, confusion and gut knotting physical pain with a future so bleak that it holds only isolation, poverty and the ever worsening of the torture of daily physical existence, is it any wonder that people chose to seek the relief that only death can bring them?"

The Quality of Life of those living with ME/CFS (along with Fibromyalgia and Lyme) has been described as being equal to HIV-AIDS persons in the last six months of life, or or cancer patients in the last few weeks of life. Unfortunately for us this can go on for decades, they dying being done in excruciating slow motion. Is it any small wonder that some people just want to get it over already? We do not get better, and we do not die. I know that many of our friends and family cannot take the strain of this any better than we can. Many give up on us very quickly. They grieve for the loss of us in their lives, and they move on as if we had physically died. Even our doctors cannot cope with people who neither get better nor die, but only slowly get worse with ever more complex problems. Most people have one or two chronic health issues in their lives, they don't add more and more problems as their bodies slowly fall apart. 

Is there anything more frightening than the thought of an endless, living death? Just a couple of years ago ( 2011) the sci-fi/fantasy show "Torchwood: Miracle Day"used this as a theme, with the dead and dying who could not heal nor entirely die. 

But we can die, and eventually we do.

I have lost count of the number of friends, acquaintances, and friends of friends who have taken their own lives because they could no longer live with the chronic pain, sickness, hopelessness, caused by ME/CFS, Fibromyalgia, and Lyme Disease. Suicide, in fact, has been the most common cause of death among the people among this group of people. Complications from these conditions, including rare cancers and heart disorders, comes in second. Death from accidents and "normal" causes fills out the stats.  Since life itself is a terminal condition, we all have to die of something.

But we have to live until we die. 

Sometimes the living part is the hardest part of all.