As a PKD patient, you want to obtain and maintain the best possible quality of life possible for you.
Now, I can’t know what a high quality of life is for you. But I have to assume at least that feeling well is part of it. Being pain-free and as symptom free as possible will allow you to live your life to the fullest as possible.
Now, there are aspects of PKD that may be beyond your control. Beyond a certain point, there’s a better than even chance that your kidneys will fail. (Recent clinical trials may indicate that this might not be a total inevitability.)
You may not control many of the symptoms. Pain. cramps, nausea, hematuria, size of girth, are some symptoms which can maybe only patially be controlled.
So, what is in your control? You know! Diet, keep doctor’s appointments, taking your meds, managing stress(!).
Your attitude is also in your control. Not that it’s easy. But it’s quite doable.
You see, much of the attitude you have about your disease depends on what meaning you ascribe to your disease.
If you tell yourself, (your “self-talk”), “Oh God! I have PKD. I’ll never have have a normal life again! Woe is me!”, your whole approach to dealing with your disease will hardly be one of optimism and positive expectation. This “resignation of doom” is something that you chose. It is not part and parcel of the disease.
Therefore, you can choose to apply a different meaning to your disease: “Wow! This is a tough break. But I know others who have successfully dealt with disease, and I’m going to do what I can to live the best possible life I can live!”
This self-talk (which doesn’t necessarily develop overnight) leads to an attitude of curiosity, exploration about the disease in general, and how you personally are affected by the disease. You are open to working with your medical team in a co-operative way. You seek support from those who are successfully dealing with their PKD Odyssey.
If you find yourself engaging in negative self-talk, you may ask,”How do I adopt a positive mind-set that will lead to positive self-talk?
Easy. Learn all about the disease, the treatment for symptoms, the clinical trials, the experiences of people who are doing well on dialysis or transplants, and keep mechanically telling yourself that “Hey! Other people have pretty well with this disease! Right now, I see no reason that, with some discipline and support, I can be of those people too!”
Keep doing this until you literally convince yourself that you will do what is necessary to live as well as you can with disease!
So, get out of your own way to a high quality of life by immersing yourself with all the encouraging input you can absorb about PKD!
Please let me know if I can help!
You can contact me at:
and you’ll learn how to “Get out of your own way!”
Peace and Blessings!
Coach Richie Perl
