Time, Plans, and Goals
October is Dysautonomia Awareness Month. Dysautonomia International is an incredible organization that for years has focused on raising awareness about autonomic nervous system disorders, funding research and education for physicians, creating programs to help patients educate themselves, and a community for us to connect. If you’d like to learn more about Dysautonomia, here is some great information. If you’d like to learn more about POTS, here is some helpful information. Every year it’s so encouraging to see the wider reach of Dysautonomia Awareness Month. I’m so grateful for all the work that Dysautonomia International does and continues to do. Their resources were an absolute lifeline to me in the very beginning when my health took a drastic turn. Having the knowledge to better understand your conditions is empowering and helpful when dealing with health issues that can be very complex and overwhelming.
October has always been a unique month for me, and because it’s Dysautonomia Awareness Month, it felt like a good time to share some personal thoughts regarding life living with Dysautonomia. As the weather begins to crisp, the leaves begin to turn the warm tones of autumn, and the humidity *slightly* fades, I can sense the holidays being just around the corner. I become quite introspective in this season, filled with a lot of thoughts and feelings. While the holidays are an incredibly joyful and celebratory time of year, they are also one of the most difficult times for me since the not-so-joyful addition of multiple chronic illnesses in my life.
So many aspects of living with chronic illness are difficult to explain unless you have dealt with chronic health issues (or something that severely alters your life that you have no power to control). Something that can be especially challenging is the passing of time. On high pain and symptom days, or medication trials and inevitable side effect days, or mind-numbingly boring rest and recovery days from overdoing it, time feels like it’s passing more slowly than a snail stuck in the mud. But then at other points in life, it can feel like time is just flying by right in front of your eyes. The nearing holidays are an indication that the end of another year is looming ahead, and with that end of a year comes the reminder of just how many things had been on my mind to accomplish that did not get accomplished.
I have always been a planner and a goal-oriented person. Plans create structure, and I thrive within structure and routine. I like to have a plan, stick to the plan, and go to bed at night successfully tired from accomplishing the plan. But that’s the *funny* aspect of chronic illnesses. There is no consistency, uniformity, or regularity to life with chronic illnesses. The only thing that you can consistently plan on, is that your life will be inconsistent. Chronic illnesses see your plan, they laugh at your plan, and then they throw so many symptoms in your face that you completely lose sight of your plan.
Soon after becoming ill, I had many people ask me what my plans and goals were for my life. I had VERY specific plans and goals from the ages of 0-15, but all of a sudden the vast majority of those things were no longer realistic. Those things had brought so much structure, joy, and encouragement to my life. But all of a sudden those same plans and goals became dark, looming creatures that constantly reminded me of everything that I had no control over which was causing me so much pain. The people who asked me about my goals I knew meant well by their questions. But I never really knew how to answer them. What I wanted to say (or rather scream at the top of my lungs) was that my goal right now was simply to make it through one day at a time with the least amount of pain, symptoms, and suffering possible. Anything beyond that was completely and utterly too overwhelming to think about. The goals I had for my life were not just somewhat off track, I could not even see the track anymore.
From the beginning of my world being turned upside down to now, the passing of time, plans, and goals are still often things that are extremely difficult for me. Time can pass by so quickly, and there is a lot of life that I miss and simply cannot be a part of. That is my reality a lot of the time. When dealing with something outside of your control, there is a perpetual state of grieving that you feel very stuck in. Grieving the life that once was, or those plans and goals you had for yourself that are no longer realistic.
Something that I have learned over the years that has helped me cope, is that I have to change the types of plans and goals I set for myself. Allowing myself to set small and realistic goals, that are far more doable within a flexible time schedule has been vitally important for my mental health. I have also found that it’s extremely important that I give myself grace when things don’t go as planned. Remembering that maybe that thing will happen later, or slower, or in a slightly different way. And sometimes, it won’t happen at all.
A big goal I had this year was getting this blog up and running, as well as setting up my social media profiles. I’ve been passionate about creating a place where I could share about my life and crafty endeavors for quite a while. Was a goal I had for myself to have this post finished and posted at the beginning of this month? Absolutely. But that didn’t happen. Did I also have plans for a bunch of other blog posts and projects to do this year that didn’t even remotely come close to being done? Yep! So despite how long I have lived with my limitations, I still often set unrealistic goals for myself…
My reality is that there is a lot of life that I miss and simply cannot be a part of. That is my reality far more than I would wish, and that comes with quite a bit of grief. But thankfully, life isn’t just about plans and goals! Life isn’t about grasping at time as it flies by. Every good moment, every little accomplishment and every step forward (no matter how long it takes) is something to treasure and enjoy. Every little thing, every little win matters. Life is about enjoying those little moments of joy that pop up when you least expect them. Life is about allowing yourself the time that’s needed to feel and grieve. Life is about planning in time to rest. Life is about learning that despite so much grief and pain in so many people’s lives, there are still moments of joy to be found. Life is about showing compassion to those around us fighting things we can’t see. Life is about living the best we can, each and every day.
