For many people, this is a time to leave bad habits behind and face the upcoming year with motivation and a new set of commitments. For those of us living with chronic disease however, we cannot escape the burden of our illness or the daily challenges we face. Regardless of the stage of our illness complacency is not an option in our efforts to maintain or improve our functioning and independence. Here are a few areas to think about when considering the new year ahead.
(1) Define your quality of life. First and foremost it is important to determine your quality of life goals so make a commitment this year to start that process of introspection. What is important to you? What goals do you believe will help improve your quality of life? Do you want to improve your mobility if that has been compromised? Or improve your sleep? Perhaps it's more specific.
Working up your stamina to be able to spend an evening out with friends or going out with your loved one for a regular evening stroll. Or maybe go back to an activity or sport you enjoyed previously. For each of us, our goals will be unique because illness impacts our physical, emotional, social and spiritual well being in different ways. Make sure your goals are realistic and set up a plan to start working towards them enlisting help from your support team including those involved in your medical care.
(2) Get moving! Our diagnosis is often beyond our control but how we face our illness is ours to determine. Optimize all those variables that can be modified. Make those lifestyle changes -- in the areas of nutrition, exercise, sleep, stress management -- that when optimized, will result in an improvement in your overall quality of life. For the majority of people with chronic illness, this should include exercise.
Taking into consideration the sometimes inevitable limitations that our illness or other health issues place upon us, there is still usually some form of exercise that is helpful to our overall fitness and may help address some of our symptoms. Identify with your health professional what forms of exercise are safe and effective, develop a routine and stick with it!
(3) Build your support group. Optimizing our quality of life is reached more easily when we surround ourselves with a support team made up of individuals that have our best interests in mind. This includes our medical team, allied health professionals, family, our social circle and also those that are part of our illness community.
There is a certain amount of understanding and support that you get from communicating with those that are experiencing similar life challenges; a certain bond that develops when connecting with another person that understands the emotional and physical hurdles you must overcome. This may come in the form of a support group in your local community that you attend in person or you may instead connect online through a number of social media platforms. Regardless of the forum, make a commitment to reach out.
(4) Give back. There is something empowering about giving back to those individuals that face similar health challenges. The method by which you achieve this will depend on your strengths and interests. Perhaps fundraising for a specific organization or participating in others' charity events. Maybe supporting someone else with the same chronic illness or becoming active in patient advocacy is important to you.
Nurture your interests so if you enjoy writing for example, start a blog to share your experiences and raise awareness. Participate in a clinical study or encourage others to do so. Regardless of the path you take, resolve to get involved with your local or global patient community - making a difference is an empowering and fulfilling experience.
(5) Consider clinical trial participation. Consider participating in a clinical trial. The truth of the matter is that without our participation in medical research better treatments or a cure will remain elusive. The development of a new drug as it goes from the idea stage to the pharmacy shelf is a long and expensive journey that is made worse by the difficulties researchers have in recruiting clinical trial participants.
The majority of clinical trials are delayed due to recruitment difficulties. Estimates show that nearly 80% of clinical trials are delayed due to difficulties with patient recruitment and up to 50% recruit one or no patients. This is an area where we can and must effect change. So resolve to ask about clinical trials at your next medical appointment or contact your community disease representative organization to ask how to find out about compatible clinical studies that are being conducted in your area.
Of course I'm sure most of us would rather not live with the challenge of a chronic illness, but it is an unfortunate reality that many of us must accept. Acceptance however does not equal complacency. It is up to us as patients to do whatever possible to optimize our quality of life and not just live with our diagnosis but strive to thrive despite it.
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