PKD makes us endure so much physically that it can take a toll on us emotionally. Our emotions can keep us stagnant, propel us forward or hold us back. Sometimes we don’t have full control over our health, but we may have some control over our emotional wellbeing.
Our emotions can become our worst enemy or our strength, guidance and tool to a happy and healthy life, regardless of the physical ailments we face. But having a positive mindset takes work. There are definitely good days and bad. Every day is a teachable opportunity where we can learn and grow, if we allow ourselves to. Some days all of this is easier said than done and I remind myself that I need to practice what I preach. Here are a few things, in no particular order, that have helped me along my journey to stay emotionally strong and balanced, which I believe is a huge part of our physical health:
It is hard to hear that others have it far worse than you, and hearing this doesn’t do much good until you see it firsthand. Connect with others enduring the same trials as you. Truly learn firsthand that you’re not alone. Hearing someone else’s story or seeing them in person gives us a different perspective on our own lives. We can learn so much about ourselves when we open up and surround ourselves with other people. People need people.
I believe humor, love and positivity are some of the reasons I’m still alive today. Laugh a lot, be silly and find the humor in things. There is nothing better than a good belly laugh, unless you just had surgery, then grab a pillow, squeeze it and keep laughing.
I tend to be a little stubborn, which to a certain extent can be a good characteristic. However, I’ve learned the importance of letting people help me. People often want to help, but sometimes they just don’t know what to do. Tell them what you need. It will make you feel better and make them feel useful.
When going through hard times, it is easy to become a hermit. No matter what is going on, try your best to stay connected with others. Even if you are too sick or in too much pain to leave the house, try and make sure you are keeping in touch with others. It helps make you feel connected to the outside world and a part of things. A phone call from my mom and dad always makes me feel better.
Not everybody understands or can relate to our health issues and pain. I’ve learned that this is no fault of theirs. You can’t truly get it unless you are living it. One person who really knows what the past three years have been like for me—with my chronic back pain—is my husband, Noah. We can’t expect others to fully understand the complexity of our health issues except those who are in the trenches with us.
No matter how sick I am, I always set goals for the following day and the future. This keeps me feeling “normal.” This can be as simple as taking a shower, running an errand or doing some house cleaning. I always feel great when I set a goal and accomplish it. Having something to look forward to is vital, so I set goals well into the future, as well.
Health issues can be depressing. We may not have the energy to do what we once did or we may not look the same as we used to. Our lives may not mirror others the same age as us because of what we are battling. Don’t lose your zest for life. Try and find something to do every day that you enjoy. As simple as it may be, take time for you and try and do something you love that can help distract you from what you are going through.
I enjoy being productive and active. It is frustrating when I have to limit myself because of my health, however we must listen to our bodies, or we will likely feel worse. Be strong enough to do what is best for your overall health, even if it isn’t what you want to do.
Sometimes life can feel so overwhelming. When it does, take a deep breath. Sometimes this simple act can make us feel more relaxed and less anxious. Enjoy the privilege of being alive and remember how lucky we are to be here.
How do you stay emotionally balanced?
Wow, I needed this today. Just started training and treatment of home hemodialysis last week (due to PKD) and my emotions are all over the map. I draw inspiration from you. Thank you.
Dear Lisa,
It means a lot to hear that you needed this post. I hope your training and treatment of home hemodialysis is going well. I’m sure it can be overwhelming, but I hope with time and practice it will become easier and less stressful. Sending lots of strength, love and positive energy your way! Hugs!
What a great letter,thank you! On another aside, I started being an -emotional eater when I was about nince year old. I was diagnosed with PKD over twenty years ago. I found myself 50lbs over weight and thank g-d everyday for finding a lifestyle program that rocked my world. Keeping balance as you say…is the core of what I learned and do daily!! Thank you…for sharing! Our thoughts can change…not our cysts. That’s great to remember on a daily basis.
Thanks Diane! Balance is key and your are so right, our thoughts can change, not our cysts! Thank you for sharing your experiences and advice.
Was diagnosed a year ago at the age of 54. Still in shock, but working through it. Lonely road if no one is around you that has it to. I’m learning as I go.
Hi Karen .. I am Daina 52 … I was diagnosed in April I am also feeling alone in this and am trying to find people I can talk to.. I want to know how to deal with this emotionally and physically .. Hope to hear from you sometime
Daina
Hi Daina,
Thank you for reaching out to Karen. I shared with Karen that I am 33 and live in Northern CA. There are chapters all over the US. If you share where you live, I can connect you with your local PKD chapter. I’m here if I can be of any help and if you are interested in reading more of my blogs, there are 188 of them at pkdwillnotbeatme.com 🙂
Hi Karen,
Thank you for sharing. I am 33 and live in Northern CA. If you are interested in connecting with others with PKD, please let me know and let me know where you live and I can find the closest PKD chapter to you for support. I’m here if I can be of any help to you along your journey. Never lose hope my friend.
I had a transplant 15 years ago (my husband was my donor) and fortunately for me, I never got really sick but I do believe that unless someone has a chronic disease, too, (PKD or not), they don’t understand what it’s like. When I had thyroid cancer seven years ago, someone literally told my husband I was using it as “another” reason to complain. Illnesses aren’t always visible. I’m immunosuppressed and while most of the time I feel pretty good, great, actually, even now and then I get some unidentified “sickness,” aches, sore throat, fatigue. My husband has to remind me that I’m immunosuppressed and maybe it’s okay for me to take a day away from the world. And try to explain to well-meaning friends that “all natural” remedies might not be good for me or might interact with my meds. People just look at you and say, “I don’t see how some herbal thing can hurt you.” Well, my doctor says stay away, so I do.
The herbal remedies are not useful. I believe these are all a waste of money and should be more closely regulated. Fantastic claims are never substantiated, save your money. However, following the PKD diet, staying well hydrated at least 2L daily and controlling your BP are all key elements in protecting your kidneys.
Thank you so much for sharing your experiences and advice, Nancy! Congratulations on 15 years post-transplant and you’re husband is awesome. He’s awesome because he saved your life and because he understands the complexity of being immunosuppressed and the importance for us to rest. We may look normal and healthy, but our bodies are fighting a lot on a daily basis. I can relate to the whole herbal thing. I always run everything past my kidney doctor and if he says stay away, then I listen. Only we know what our world is like and we can’t expect everyone to understand and that is ok. You understand and sounds like your husband does too and that is all that matters. You are definitely doing something right being 15 years post-transplant. Keep it up and thanks for sharing!
I was diagnosed with PKD when I was 30 (I’m 69 now).I started dialysis 3 years ago. Last year, the transplant doctors decided my kidneys were too large to admit another kidney for transplant, so they decided I needed a bilateral nephrectomy. At the same time, they removed my gall bladder and my appendix. Since then, I’ve actually been feeling worse than when my kidneys were not functioning fully, but were still in place. My nephrologist said that this was because I was still getting some residual benefit from them. The point of all of this is suggest that, even if you have a doctor that you trust implicitly, think long and hard about your options when presented with a course of treatment. What’s right for another person may not be right for you.
Thank you for sharing your PKD journey. The bottom line seems to be every case has a uniqueness which prevents a unified treatment plan. For certain, for all PKD patients, controlling your BP is the first line of defence. High blood pressure damages the glomeruli which is irreversible. The GP I see is not a transplant advocate and considers transplant as only the last resort. However, in U.S. some nephrologists now consider preemptive nephrectomy and transplant as being the innovative and most beneficial therapeutic option? Life is a gamble and there is a risk in even crossing the street.
I’m sorry that you endured this Rex and appreciate you sharing what you’re going through. Your message is important: “what’s right for another person may not be right for you.” I completely agree with this as PKD is a very individual disease. Just because something happened to someone does not mean it will happen to someone else. Our health is unique and we must not compare our journey to others or expect our outcome to be the same as others. Wishing you the best!
Thank you for your story. I have been battering kidney disease since 8 years old. They have since found the pkd. Everyone’s story’s are so unliftting. I feel so alone most days due to others saying I am fine because I look fine. Now I’ve lost tremendous amount of weight and there thought I must of done this on purpose. Really..haha inspiration by others and my boyfriend is all I have to hold on to right now. Thank you.
You’re so welcome Robbin! Please know you are not alone and don’t listen to those who think you are fine because you look fine. I’ve lost count of the times I’ve heard, “you look like the picture of health.” I totally get it! We are battling so much on the inside and others just don’t understand. Focus and connect with those that do understand and those that support you. I hold tight to inspiration from others, my family and husband as well. I’m thankful to hear you have support. Try and keep your spirit strong. You are not alone. Sending strength and positive energy!