“The secret of change …is to not on fighting the old but building the new.” ~ Socrates
I think that my advice for you and myself come straight out of my recently published book: “Parkinson’s Diva: Hello Possibilities!“ The thing that we as people living with a chronic illness usually want a new start, a new way of managing disease better, or living better fuller lives despite our disease. We make a lot of self -care goals like exercising more or eating better. However, what I have been reminded lately as I was visiting a friend at the hospital, who has had many years of living with PD, is that sometimes what we desperately need for our well -being is get rid of old bad habits and practices rather than attempt to acquire new ones.
I think we can all use a bit of this wisdom – especially as we enter a year of perfect vision (20/20) we should be able to look at ourselves in a perfect light and be totally honest with ourselves of what is working and not working in our lives as well as what we like to keep or let go. Quit looking to the past and focus on the future as well as be present in the moment.
Sometimes, the longer we live with an illness we begin to put up walls to keep the bad stuff out but what we don’t realize is that those same walls are also keeping the good out making us lonely and more vulnerable.
We need to start chipping away at the walls be have built around for others to see the beauty within. It’s okay to let our guards down from time to time only then can we be exposed to new wonderful things waiting for us.
Other times, we become so focused on our health or maintaining our illness at bay that our entire lives revolve around the one disease we are trying so hard not to succumb to. Instead, we develop bad habits and unhealthy coping mechanism for dealing with our fears, frustrations, and stresses of living with a chronic illness- now imagine living with not one but two?! Now throw in having to care for special needs children or elderly parents that have medical issues of their own and we have the makings of a perfect storm if we are not careful.
The way I have been able to keep moving forward and truly allow Parkinson’s and now lupus to be just another intricate facet of my life is by following the next principles.
I too had to start with a bit of self -love – embracing all that I am- the good with the not so good which included having to live a life with PD. Although, living with a chronic illness mandated modifications to be made in every aspect of my life; it did not however need for me to stop being who I am as a person, mother, wife, daughter, friend, and diva!
Of course, breaking bad habits is no easy feat- believe you me. This decade has thought me a lot about myself and in a funny twist of fate it took losing everything I valued most to really discover myself and find true happiness.
First. We must practice self -love. One must be gentle with one self. Sometimes we forget our value and worth because the only role we have allowed ourselves to play is that of a patient with no voice becoming a victim rather than a powerful advocate for ourselves and others. Although, we cannot escape our illness we should embrace it and make it part of our life without letting it take over. It is not necessary to talk about our illness constantly nor is it healthy. When we love ourselves others want to be with us and enjoy our company more.
Second. It’s okay to say no to others and spend time on yourself. Sometimes we need to disconnect from social media, Parkinson’s groups or other groups which do not lift us and enhance us rather drain us. Say yes to positive things. Prioritize since we have limited energy – can’t have all but can have what you really need.
Third, rest without judgement. This was especially hard for me to do. My family and friends initially would make sly remarks implying that my need for rest and sleep equaled laziness on my part. You can either be confrontational (which I don’t recommend), ignore your family and friends which is not a smart choice either especially since these are the people that will be there for you when it matters and you will become isolated. You can talk to them calmly and friendly mater explaining why you need to rest or simply don’t make commitments during the time that you need rest more. I prioritize my sleep above most things- very few things are truly important that will make me sacrifice my own well-being- my daughter well- bring is my priority as a mom. But, even she has learned that I am much more effective as a mom if i am well rested.
Four. Don’t be afraid to speak your mind. Once I allowed myself to be able ask for help for things that I needed to be able to decrease my pain and function better in my other responsibilities, I felt liberated. My mental health thanked me as well as my family. However, remember that we live in a community with our spouses, children etc. so everything can’t be about us. It is a give and take.
Five. Start living the life you always imagined. It is possible with some concessions. Go ahead start dating, find love, start a new career, a new hobby, get a new make over- remember you are still you- beautiful, strong, witty, and smart. Since I was diagnosed with Parkinson’s over a decade ago, I have learned new things and developed new skills i never would have had the chance to develop or learn had it not been for my chronic illness.
But above all “find joy in the things you do- big or small” and celebrate them equally.
Go ahead what are you waiting for -you have 365 blank pages to fill as your heart desires….what will the result be? bold and colorful? or something in between? the choice is yours – just don’t leave empty!
Happy New Year!!!
from your friend- Parkinson’s Diva
all rights reserved By Maria De Leon MD -Parkinson’s Diva