Care4Dystonia, Inc.

Coping with illness is a daunting task for people already exhausted by the debilitations of the illnesses, themselves. Day to day life becomes a real challenge. And, some days, you may wonder if it’s really worth even getting out of bed.

Life can be dealt with, however, and can even be enjoyed. But there are some options to carefully consider, and very important choices to make. Unfortunately, with chronic illness usually come ongoing waves of exhaustion, frustration, and even depression and despair. So, make your choices carefully, and make each decision count, when and where you need it most.

What SHOULD you do?

1. First and foremost, remember that you are the only one with your own unique self-knowledge who can or should make the major decisions about your life. Only you know how you feel at any given time, what you are capable of, and what your limitations are. Don’t allow feelings of guilt to push you into doing something you know your body will pay for later. And don’t let others make decisions only you are qualified to make.
2. Make sure your health care is in the hands of capable doctors whom you trust. Insecurities about your physician, or reliance upon incompetent doctors, not only add to your daily burdens, they can cost you your very life. Investigate your health options and find a doctor you trust with your life, then research and learn everything you can for yourself. Make sure your doctor is someone with whom you can sit and truly communicate. Don’t let a rushed medical practice and doctor push you in and out of your appointment before you have the chance to fully discuss your questions, concerns and issues with your doctor. Remember that the doctor is there to serve you, not the other way around. Together, you and your doctor can map out the best course for your future health.
3. Choose your priorities carefully. On the very best of days, you may find you can zip through a “to do” list with relative ease. Other days, however, a single task can wipe you out for the rest of the day, or even for several days thereafter. So, choose carefully. Plan your major chores in such a way that allows you to space the labor out over several hours, or even days. Consolidate activities and duties, so that you maximize all of your efforts, for the best effect on your body and on your mental health. Trying to do too much only increases the burdens you already carry on your shoulders. Don’t carry guilt around with you, as well. Throw away the perfectionist attitudes and efforts. Just do what you can do, the best way that you can do it, and leave the rest for another day.
4. Decide what is most important in your life. This goes hand-in-hand with setting your priorities. Is a spotless house more important than attending a special event with your family? Are having only clean clothes in your house worth missing other activities you had planned? How important is it for you to do everything all by yourself? For that matter, how important is that you do absolutely everything, at all? Decide ahead of time, and the priorities become easier to set and stick with.
5. Learn to take some personal time for yourself, just to have fun. Don’t forget how to let go and just enjoy life. Dwelling on life’s problems, and the health issues that continually bring you down, can make you forget you ever knew how to laugh. That’s one important aspect of your life you may need to cultivate - learning how to laugh again. There is joy to be found in life. There are ways to let go of fears and anxieties, and the problems associated with any chronic illness. You don’t have to turn your back on the realities of life to be able to just put it aside for a little while. Take a walk in the park. Go on a picnic. Enjoy a long soak in a hot bubble bath. Whatever your passion in life, enjoy it to the fullest.



6. Finally, know when it’s time to ask for help - and don’t be afraid to ask. Let someone else take care of household chores for awhile. Let friends or family members take care of your kids every now and then, so you can get some much-needed rest or “down” time. With the family responsibility of children in someone else’s hands, you are free to concentrate on other important tasks that you need to schedule and address, including that all important time for the fun things.

Whatever it takes, dig in for the long haul and remember you can do this. You CAN get through the hard times and come out on top. Just keep in mind what’s really important in your life, and then go for the fullest life possible. It’s yours, with a little careful planning and follow-through. DYSTONIA IS SURVIVABLE.

Source: http://wy.essortment.com/copingwithchro_rafk.htm

If you are depressed…

If you are depressed, seek attention. You can also enroll in a sample Dialogues: Time to Talk program where you can get the most out of your treatment. (Sponsored by Wyeth Pharma.) There are many similar sample programs dependent on the medication prescribed for depression, anxiety, panic disorder etc.

Useful Links

www.meetinglifeschallenges.com/
http://www.councilforchronicillness.org/ Counseling/Chronic_Illness.htm
http://www.healingwell.org/library/health/malik1.asp
www.clevelandclinic.org/health/health-info/docs/0100/0169.asp?index=4062&src=news
http://www.familycaregiversonline.org/mod_13_coping_chronic_illness.html
www.webmd.com/content/Article/100/105769.htm
http://www.ndrf.org/Caregiving/

Useful Reading:
Barnes & Noble: Coping with Chronic Illness
Barnes & Noble: Blindsided
Barnes & Noble: Chronically Happy
Barnes & Noble: We Are Not Alone
Barnes & Noble: Coping with Chronic Illness

You can read up on the ways others with dystonia live on our new community forum at  http://community.wegohealth.com/group/dystonia. Join and Learn.

“Don’t give up when you still have something to give.
Nothing is really over until the moment you stop trying.”

Copyright.c4d. 2006-8.