As children, we are encouraged to get involved in pastimes such as sports, clubs and hanging out with friends. I recall doing ballet, gymnastics, singing lessons, piano and sleepovers with friends. When you talk to parents, it almost seems like their main job is to drive their children to different activities. As adults, it is easy to get distracted and lose sight of our own interests. We’re busy working and helping others like our family, or if we are PKD patients, busy caring for ourselves.
There are different phases of PKD that can be daunting, like dialysis, dealing with debilitating pain, transplant and the stress of the unknown future. However, through all of these chapters, we deserve to take time for ourselves, do what we enjoy and what brings us joy. As hard as this may seem, there is life beyond PKD, and we need to find it and live it.
I remember my dialysis days mostly consisting of me being attached to the machine and not feeling well. However, I could have done a better job of trying to take my focus off being sick. I’ve learned a lot over the years, and through the stresses of post-transplant living, I know it is important to take time for ourselves. No matter how busy our lives are, if we really want to do something, we can and will make time for it.
A few things that help distract me from my challenges of living with PKD are writing, enjoying nature, walking, Pilates, family and friends. They each provide a different angle of enjoyment and that is important because, sometimes, one activity instead of another is just what is needed. Writing is therapeutic, nature is calming, walking clears my mind, Pilates helps me feel strong and able to exercise since I can’t hike like I used to due to my back issues, and family and friends are good for the soul as they provide laughter, support and let me know that I am not alone.
PKD patients have a lot to think about on a daily basis. We coordinate medicines, doctor appointments and medical bills. We may not be able to do what we used to because of our health. There is extra stress in our lives and our viewpoint is different than others. For those who have chronic pain, it can be exhausting, both physically and mentally. We need and deserve a break from all this worry and weight on our shoulders. Resting and taking time for us is vital on our journey towards the healthiest life possible.
As kids, hobbies seem to be a given and a large part of our childhood. Let’s not lose that spirit and important part of our journey. I hope you’ll join me in recognizing what makes you happy and incorporating it into your life, because you deserve it. We only get one shot on our individual voyages, let’s make it count and find joy as often as possible.
What hobbies distract you from your health challenges?