Thursday, December 17, 2009

Digestive Motility And The Holidays

For people who are healthy, the holidays can be a very stressful time. But, for those with digestive motility diseases and disorders, this time of year can be even more challenging.

The heightened focus on food during the holidays can punctuate the fact that the person with digestive motility cannot eat or cannot eat "normally." The aroma of baked goods and special holiday recipes can become increasingly more pronounced, whether it is at home, while visiting, or driving past restaurants. Having to cook for the celebrations when the person feels ill can evoke a multitude of emotions. The temptation to eat foods that the person knows is going to cause an exacerbation of symptoms can become overpowering. The roller coaster of emotions can truly become heightened.

For some, the holidays can be a reminder of the past, when he/she was healthy and was able to eat. Watching others eat and enjoy food while the patient is unable to can give rise to anger, overwhelming sadness and even depression.

The emphasis of the social impact can often times be painfully felt. Some may feel extra pressure to fit in and attend social gatherings. Some may punish themselves by eating just so that they will "fit in." Others may fear eating in public and feel embarrassed or self-conscience that they cannot eat. They may have anxiety that their symptoms will become apparent in the public/social situation.

Feelings of guilt may be felt because the patient is unable to meet his/her expectations or the expectations of others. Often times, the patient does not want to disappoint his/her family and so may even over extend him/herself in order to accommodate.

Because of the unpredictable nature of digestive motility diseases and disorders, the commitment to accept a social invitation can be unsettling. Sometimes that patient accepts with good intentions only to have to cancel because of the intensity of the symptoms. The questions arise as to how much they can mask in public so that they will not make a scene, become embarrassed, leave early, spend time in the bathroom, not be able to eat what is being served, or have an emergency situation?

The fact that many people do not understand the patient's illness can also be more apparent. Comments such as, "You look so good" or "Why can't you eat? You don't look ill!" can make the patient even more discouraged. The expectations that others SHOULD understand can be quickly shattered as the patient feels even more isolated and alone.

The added tasks that need to be done during the holidays can seem overwhelming to the already greatly fatigued patient. All of this can send the patient into a downward spiral, both physically and mentally, as attempts to accomplish what needs to be done may be futile. It may be another reminder that the illness is progressing. It may be another reminder of what the illness has taken away. It may lead to even more physical and emotional exhaustion.

After living with digestive motility disease for nearly 31 years, I have personally journeyed through some of the obstacles associated with coping with the chronic illness. The lack of understanding, the painful look of helplessness in my family's eyes, the not looking ill in spite of all the suffering, well intentioned people prompting me to eat, the feelings of guilt of not meeting my own expectations, missing out on many important family functions and events, not being able to work, and the long list of issues that so many others must face.

But after all these many years, I must say that through the support of my husband and family, the strong faith that I have as my foundation, the people within my extended family of AGMD, and time itself, have enabled me to weather each storm, become even stronger in will and determination, adjust to the ever present and ever changing symptoms, and camouflaging how I am feeling and what I am truly going through in public. I no longer feel hunger, I no longer have the temptation to indulge in eating something that I know will most likely precipitate an exacerbation of symptoms because the pain is far greater than that one morsel of food. I have learned to deal with the "You look so good" comments, the gifts of food from people who just don't understand, and many of the other things that accompany living with digestive motility. There are still times when my mind will battle with my body as I attempt to push myself to accomplish things, attend events, and take on more tasks only to be disappointed in myself because of the realization that will power can only get you so far. But the inspiration that I get from so many others walking the same road makes things just a little bit easier.

During the holidays, I still participate by sitting at the table and sipping tea. And even though my visit with family is abbreviated, at least I am able to still share some precious moments with those who I hold dear. This has become our "normal" life. And I am grateful to be alive and still be a part of each celebration. And during these times, I reflect on all of you and I sit in grateful humbleness of how enriched my life truly is.

If you are having trouble coping with the holidays because of digestive motility, there are some things that you can do. Some suggestions include the following: contact AGMD, call an understanding friend, talk to a psychologist or psychiatrist, tell your physician, talk to your minister, and/or write your thoughts in a journal.

Throughout these holidays, I want to remind you that you are not alone. AGMD is here for you. And know that I am with you in heart, thought, and prayer not only throughout this holiday season, but always.

May your new year be filled with hope and an abundance of blessings.


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.