Thursday, December 3, 2009

The Layers Of Life ... With Digestive Motility

Recently, it was discovered that I have autonomic neuropathy. This causes me to feel even weaker than before, have problems regulating sweat, have episodes of passing out or feeling faint, have urinary concerns, and an inability to discern hypoglycemia. Along with this, my dystonia and episodes of transient mini seizures have become more frequent. Sleep apnea has also been added to the list in addition to major concerning problems with my thyroid. I relate all of these new developments to describe what I call the layers in my life ... The new symptoms and illnesses that are added and compounded with all the digestive motility diseases and disorders that I suffer from.

Digestive motility diseases and disorders are extremely unpredictable making the ability to adjust and integrate them into one's daily life extremely challenging. Just when the digestive symptoms become a "comfortable" and "normal" part of an abnormal life, the disease becomes exacerbated without any warning. This leaves the patient once again scrambling to figure out how to live their life in what then becomes a "new normal" for them.

This is a mammoth task for any human being. But, when suddenly a new symptom develops that may not be digestive in nature, then it takes a herculean effort to endure and overcome this as well. These are the layers, the symptoms that you may not see in the medical book or the illness that may be dependent or independent from the motility disorders.

Along with digestive symptoms, so many of us suffer from overwhelming fatigue, lethargy and malaise. It takes sheer will, perhaps a bit of stubbornness, and a committed drive just to overcome this cloud of energy loss and be productive through the day. It can be difficult for others to comprehend how much effort it can take just to pick up a pencil. Perhaps it is because so many of us do not look ill. Perhaps it is because so many of us find a hidden strength in order to accomplish things in our daily lives that need to be done in spite of being ill. Perhaps it is because we have learned to integrate the illness into our lives or perhaps, it is because we try so very hard to be productive in order to fulfill our sense of purpose in life. Whatever the reasons, this extreme fatigue is one of the most challenging "layers" of symptoms that plague so many of us. There are some days, when we are more successful than others in staying up a full day or doing what we set-out to accomplish. But there are other days, when the energy level is so minute that a few steps to the bathroom becomes a daunting task.

Then there is the low back pain that so many of us have. You probably wouldn't see this symptom in many medical books as it relates to digestive motility diseases and disorders. However, when the belly becomes distended, the pressure of the swelled abdomen pulling on all the muscles and spine can be excruciating. Another layer ... another symptom ... another challenge.

Of course the list of medical problems that so many of us experience could probably impress the Guinness Book of World Records. It is hard to believe that one person can have so many medical issues and still be able to function to a certain degree and in some cases, not look ill.

Integrated into all of these layers is the emotional roller coaster that one can experience. With digestive motility diseases and disorders, there is the continuous struggle with the symptoms. For some, the inability to eat can be emotionally painful, especially, while others are able to enjoy their food. There can be social issues, feelings of isolation and loneliness and for some, even depression. Add to that, the extra layers of symptoms and illnesses that may be non-digestive in nature. The migraine headaches, arthritis, neurological, circulatory, and pulmonary problems ... the bone and muscle diseases, etc. All of these layers of illnesses make the challenges of digestive motility even more demanding.

Along with all of this, comes the stresses of life itself. Whether it is finances, relationships, deadlines, or losses ... these extra layers can often cloud some of the most precious blessings that we have.

There is no question that the human body is a remarkable machine. But there is no question that the human spirit is also remarkable. Throughout all these years, I continue to be amazed by how much so many of you have endured on a daily basis. I continue to be in awe by the perseverance, determination, wisdom, and love that so many of you unselfishly give no matter what your circumstances.

It is this inspiration along with my faith and wonderful support that get me through each physical hurdle and all of life's trials ... all the extra layers in my life.

No matter what symptoms you are experiencing, no matter what decline your emotional roller coaster is falling at, and no matter what extra layers you are dealing with, I hope that you will find refuge in knowing that so many of us understand, so many of us care and so many of us are going through similar journies. Together, we can overcome all the layers of our lives. And I am so honored to be there travling along side of all of you.


Anonymous said...

I cannot believe what I a reading!! someone out there like ME! I can understand everything you write and feel all the things you feel. People look at you and think theres nothing wrong with you, yet you think your about to have a heart attack when you get to the top of the stairs!remarks come thick and fast when your belly swells making you look like your preg, Its taken nearly 30 years for the medics to believe me and help me find a soloution, yet I still feel I m battling to get through the day. Thank you for sharing your thoughts and feelings as you ve shown me I m not alone.Thank you

Joyous said...

I too am both sad and happy to know that I'm not the only one with gasoparesis and chronic intestinal pseudoobstructions. I have been hospitalized every month for the last 6 years, My stomach distends and I have bruising from the sever spasms ,migranes, vomiting ,blood pressure goes to 185/165 and upJ.My journey has been a long hard road.All of your feelings,fear frustration, isolation,judgement are ones I battle with.I am blessed with a fantastic husband and son.My husband has retired to take care of me and my son.My faith is strong and have always said thing could be worse.I look forward to finding some help and giving some help.I have learned a few tricks along the way to stay as healthy as possible.Thank you again for sharing your stories.It is nice to know that there is a community behind us.I would love to try and help bring awareness of this disease. To educate Doctors and people