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NEWSLETTER #3 - March 2017
International Empty Nose Syndrome Association


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NEWSLETTER #3/2017 – ENSIA
March 2017


Competition and cooperation

Many of us were raised with a competitive edge, striving to do and be our best each day. This drive helps us reach our goals and take responsibility for our actions. But while competition has various positive uses, including its tendency to push us to grow and improve – and it can indeed be helpful to a point – it can also be quite damaging, particularly in the case of working on achieving common goals for empty nose syndrome, as such solutions can primarily be achieved through cooperation. In this instance, competition can be counterproductive and undermining of our collective efforts. 



The reality is many of us are sick and are dealing with a very debilitating condition, so we need to support and be careful not to judge one another. This judgment can be in the form of suggesting certain treatments are superior and will absolutely be effective while others are totally ineffective and useless (when the reality is most ENS treatments are “experimental”), focusing on each others’ faults (rather than our common goal of seeking a solution), and criticizing each other or even the doctors who are trying to help us (rather than appreciating our unique attributes or the efforts of the doctors who are seeking solutions), or even acting in knee-jerk manner to what we perceive as a slight from a fellow ENS-sufferer. In fact, such judgment will not only limit or ruin friendships or potential connections, but it might also lead people to refrain from sharing potentially very useful or beneficial information online.  

Personally, I have always found that, when I feel hurt and become angry, it is best to give some time to process information and consider the others’ motives or point of view so I can respond in a thoughtful, appropriate manner. As a counselor where I work once stated, ‘it’s better to give it 24 hours before responding to an email on an emotional topic.” Conversely, reacting quickly can often escalate a situation and add to the misunderstanding. Sometimes by simply being quiet the other person recognizes they are in the wrong and will respond in an apologetic manner. The humbling reality is we are all imperfect, we all make mistakes, and most importantly, we all need each other. Empty nose syndrome is not a well-known or a properly recognized condition, yet we have some sense of what each other is going through, and this makes our unity all the more important in order to successfully pursue and achieve our collective vision. 
When we join an online discussion or seek to add insights, for example, we should ask the following questions:
  • Would sharing this information be helpful in creating improved awareness and respect for ENS? If so, cooperation says share freely. Competition says withhold. This is why ENSIA, for example, shared information about the Germany treatment at the Acqua Clinic once it became available.  Additionally, ENSIA has provided a resource of information on various available treatments and ENS experts on its website, has shared current news and trends in empty nose syndrome, and has recently put together an extensive guide and informational materials for both healthcare professionals and patients.     
  • How important is it that we gain recognition for what we have done or what we propose to do for ENS? If we think it’s very important, competition seeks to gain full credit and drowns out the other voices, in some cases being highly critical of opposing views. Cooperation, on the other hand, is ready to share anonymously without any need to take credit, and is thankful for the insights that others provide, even when they challenge our strong preconceived notions of the truth.  Participating in the Stanford University study, which ENSIA encouraged you to participate in (or responding to questionnaires from researchers on a treatment you may have undergone) are examples of how we can anonymously promote knowledge and awareness for ENS in a spirit of cooperation. 
  • Does the idea support a mutual goal for ENS OR an individual goal? If it is a mutual goal, cooperation seeks to unite sufferers to band together and recognize these ideas, while competition keeps the idea to him or herself in hopes of gaining greater recognition or credit.  If it is an individual goal, cooperation doesn’t emphasize it while competition eagerly promotes it.  Again, mutual goals are those studies and questionnaires just mentioned, while individual goals reflect on our individual situations (whether a treatment helped us or not, for example) and our unique health circumstances.   I am not stating we should not share our experiences, but rather to be mindful of our collective goals and respectful of others’ opinions, especially when sensitive, highly personal health information is shared.  Otherwise, we certainly run the risk of alienating other people from potentially wanting to contribute.
Bottom line:  Do we have the greater good for ENS at heart and, if so, how can we proceed together as a team to promote ENS awareness for proper recognition, effective treatments, and hopefully a cure? Are we building each other up or inadvertently tearing us down? 
A documentary entitled “I am” is worth watching and offers many insights into the psychology of cooperation versus competition. You are encouraged to view the 2 ½ minute trailer at:  https://www.youtube.com/watch?v=VAwlzT8cBSA.


Health Tip of the Month

A past newsletter discussed the value of using a humidified CPAP machine for improved sleep. It is a well-known fact that sleep is critical for good health and prevention of other serious health ailments, such as heart disease, diabetes, high blood pressure, and cancer. While a CPAP can definitely help certain ENS patients with improved sleep, poor sleep continues to remain a huge obstacle for many people with ENS, with some struggling immensely to get a reasonable amount of, or decent quality of, sleep. Unfortunately, with significantly compromised nasal breathing, ENS sufferers will likely continue to experience a significant battle with sleep. 
However, here are some practical sleep tips and ideas which are within our control, and hopefully can offer us at least some degree of sleep improvement:
  • Sleep in a pitch black room and/or use an eye mask. Eye masks cost just a few dollars and work great.
  • Avoid exposure to blue lights, such as a computer or television, for an hour before your bedtime. If you absolutely must be on the computer, smartphone, or television, use of amber-colored glasses can block blue lights. I personally use such glasses, which I purchased for under $10 at http://a.co/6fdjcxP.
  • Use a humidifier, especially during the cold, dry times of the year.
  • Try to go to sleep at a relatively early hour, preferably by 10 PM or, by latest, at 11. 
  • Stop eating 3 hours before bed to avoid acid reflux. 
  • Stop drinking water or any liquids for an hour or two before bedtime, so that you don’t have to make extra trips to the bathroom at night. 
  • Avoid caffeinated products, particularly in the evening.  Likewise, alcohol or drugs can also disrupt your sleep pattern.
  • Exercise during the morning or daytime or, at latest, in the early evening.
  • Consider a melatonin supplement or chamomile tea, which also has a sedative effect. 
  • Take a warm bath about 1.5 hours before bed.
  • Think positive thoughts and do some relaxing activities before bed such as journaling, listening to calming music, or mediating.  Try to reduce stress however you can, as anger and anxiety are incompatible with sleep so hopefully doing these would limit or reduce their impact.
  • Take a short nap but, if you do, limit it to 20 minutes and take it before 2:00 PM so it doesn’t interfere with your sleep.
  • Keep your bedroom temperature between 60 and 68 degrees Fahrenheit.
 
Best wishes,
Chris Martin, Author of “Having Nasal Surgery?  Don’t You Become An Empty Nose Victim!”

The health tips in this newsletter constitute non-professional advice and do not represent the official position of ENSIA. It is always recommended that you consult with a healthcare provider for your medical needs.  Should you have any suggestions, feedback, or concerns or issues you would like us to address, or thoughts on ENSIA, please do not hesitate to contact us at info@ensassociation.org.
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