Someone very near and dear to me has been living with various undiagnosed chronic pains and symptoms of many chronic pain conditions for close to two years. There was a time when she and everyone else, including me, had hoped that she had something that was temporary or that could be cured. But that doesn’t seem to be the case and we are now just waiting for her doctors to come to the correct diagnosis. As I have suspected for quite sometime, her doctors are now leaning towards an incurable chronic condition, because of this I have been gently encouraging her to let go of expecting that her that her life will one day return to normal. While I fully understand that nobody wants to hear that they will never live the way they used, it is one of the most important pieces of advice that I can offer.
The sooner one lets go of the notion of living like they used to, the easier it will be to redefine what their new normal will be. Removing past expectations will also reduce the amount of disappointments that you will face because of your conditions. This is probably one of the hardest things to do, mainly because by admitting and accepting your new life, you are also admitting and accepting that you will never know a life that isn’t filled with physical pain.
It is my hope and prayer that the other people in her life will also encourage her to either find new ways to do what she used to love doing or help her discover talents that she didn’t realize she had. She doesn’t need to be reminded of how horrible her condition is. She needs to be reminded that her life isn’t over. I will personally beat the snot out of anyone who tells her that they would rather be dead than to live in pain!!! She needs to hear that she is still a beautiful and talented young lady who has many great moments ahead of her. If it hadn’t been for living in pain, I wouldn’t have had the time to rediscover some of my past interests or discover new talents that I didn’t have time to explore for before living in pain. Some are freaking out because she is so young, interestingly she is only a year younger than I was when chronic pain invaded my life. I feel blessed to be a part of her life and to have the opportunity to encourage her. This is one of those times when I am thankful for all that I have been through, because if I hadn’t I wouldn’t have the compassion needed to help her transition into her new life. Oh how I wish I had known someone like me when I was first diagnosed!!!!!
I have promised to not only be her cheerleader, but to be someone she can vent her frustrations with as well. My shoulder is always available when a good cry is needed. My arms are always available for a gentle hug. The same goes for all my spoonie friends, including you!! I know your frustrations, I know your pains, both emotional and physical. Whether you are new to living in pain or are like me with many, many years under your belt, my advice remains the same. Create a new way of living, one that works with and around your conditions. Be warned this is not a one time deal or experience! As my conditions have worsened and new conditions were added to the list, I have had to continually redefine my expectations.
I wish that this sweet girl never had to experience the frustration of getting diagnosed, let alone the physical and emotional pains. But as I did, she will find her new normal and continue to bless all those around her. I love her to pieces and I beyond thrilled that she didn’t waste all the years that I did by not allowing myself to have fun. I love that I was able to encourage her to embrace her good days and to live them to the fullest.
While there are many different things to consider when redefining your life, one important part of changing expectations is listening to your body and being flexible. I used to plan out my days and each hour of them. Now I have a list of things that I would LIKE to accomplish that week or month, but I do not schedule days or times! By omitting deadlines, I am able to forgo the guilt and disappointment that comes from not getting something done on time. Nor am I forcing my body to do something when it is clearly not up for the task. I tackle each item on my list in no particular order, instead I do what I can when my body allows it.
What tips regarding redefining life or changing expectations do you have to offer?
The Disabled Diva
Tagged: advice, arthritis, chronic illness, chronic pain, degenerative disc disease, fibro, fibromyalgia, health, invisible disabilities, life change, medicinal marijuana, mental-health, MMJ, MS, pain, psoriatic arthritis, relationships, spoonie, spoonies, wheelchair