- Meet Consumers/Patients
For many people, HPEN or otherwise, the holidays are stressful because of the holiday parties, the decorating, the visiting relatives, the presents, etc. For HPEN consumers—already hard-pressed to keep up—our lives are tough enough without the extra stress. Our health is precarious, our feeding therapy is time consuming, we are always on guard to avoid infections, we have GI distress on a regular basis.
How do we get over the holiday hurdles?
The easy way out is to shut the door and make the world go away. Or we can try to stick to our daily routine and ignore the holidays. Or we can suffer silently. Unfortunately, many of us do some variation of all the above. We do not have the will power or the energy to cope with the holiday hurdles.
When I first started tube feeding, I was hospitalized four days before Christmas and did not go home until mid-January. For six years, I have been unable to eat; unable to drink; even unable to swallow my own saliva. I have feeding-tube issues, weakness on my right side and balance problems because of a stroke, reflux, dumping syndrome, diarrhea, and all the psychosocial issues most HEN consumers experience. I have good days and bad days. But, mostly, I have good days. Mostly, I enjoy the holidays.
Each of us is unique. What works for one person may not work as well for someone else and vice versa. I want to share some of my coping strategies and make some suggestions that may help you. Some of my strategies may work for you; something may give you an idea. I hope you can have some happy days during the holidays!
First of all, you have to decide to make the most of it. Do the best you can. Decide to take charge and be positive. Challenge yourself to make the holidays as enjoyable for you as they are for everyone around you. Fake it, if you have to. Play a role, if it helps. Seek someone to stick with you and help you get the most out of the holidays. Set a goal and stay focused on it. Laugh and relax, even if it does not come naturally. Laugh and relax, even when you do not want to. Laugh and relax and others will laugh and relax with you.
What works for me is to set a goal. For example, my wife and I go to every holiday party we can. I cannot eat or drink, but my wife does, and she enjoys it very much. I’m happy when she is happy, and I enjoy good company and good conversation. The goal I then set is to help everyone else enjoy the party, especially the hosts. I help serve the food and pour drinks. I clear empty glasses and plates. I keep busy helping the hosts and it gets me around the room and makes it easy to visit with everyone there. It distracts me from the fact that I cannot enjoy food and distracts others from the fact that I am not eating or drinking. In many ways, it puts me at ease and puts others at ease. It especially helps the hosts and lets me give them something special for the holidays.
Thinking of Others
We all have "down” days. Because of our chronic conditions, it is easy for us to feel sorry for ourselves. Especially during the holidays, I look for opportunities to help others who are in greater need. I sign up to help make sandwiches for the Salvation Army and then distribute them at a homeless shelter. I join the choir singing carols at nursing homes. I shop for children’s gifts and drop them off at the Marine Corps Toys for Tots collection box. I realize that many people have problems and I feel better because I can help them. I am grateful for all the good things in my life.
During the holidays, I make a special effort to thank the people who support me. Friends and family help me cope and the best way to thank them is by showing them how well I am coping with my condition. Telling them I love them and appreciate all they do for me makes me feel good and makes them feel good. Making a special effort, during the holidays, to appreciate the people around me and to appreciate the good things about my life helps make the holidays better for me and better for the people I am around. The holidays are a good time to "step up” my positive attitude.
For several months after I started tube feeding, I felt alone. I did not know anyone else with my condition. I felt isolated and depressed. Through the Oley Foundation, I discovered others who faced the same things I was facing, but who actively improved the quality of their lives. Knowing they could do it made it easier for me to do it. Now, because I make a very deliberate effort to improve the quality of my life, I am a thousand times better than I was five years ago. It did not happen overnight. It was a gradual process and I need to keep working at it. The holidays give me extra motivation.
My suggestion is to recommend that "giving is better than receiving” to everyone you know. Do it by example. Give others the gift of seeing you at your best. Encourage others to give to those who could use some help. This holiday season, I am going to encourage my friends and family to give a donation to the Oley Foundation. I do not know any other organization that does so much with so little money. Every contribution makes a difference. Giving to the Oley Foundation during the holiday season will make all of us feel better. Happy holidays!
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week