Nobody likes a setback. I’ve learned that downtime gives us more time to think, which sometimes can be to our benefit and other times not. I find it interesting the thoughts that sporadically cross our minds. I had the thought the other day that I may never be able to run again. Not that this is a big deal for me, but the thought did cross my mind. When I see big open fields or mountains, I envision myself skipping around freely or wanting to climb to the summit. Those days may be gone. However, there are plenty of other things I can do and it is important for us to focus on those aspects in life.
I’ve been dealing with a major muscular back flare-up for the past week. When it first started, I was having a lot of trouble moving and walking. I have had to lay flat, ice, heat, stretch, and rest a lot to try and relax my muscles. My patience has been tested at times, but I know if I don’t listen to my body it will only get worse. It has been one year and four months since my back surgeries for my disk herniation, and I still deal with daily pain and these episodes that put me out of commission. Just like most things in life, we want to connect the dots and we want answers and explanations. Sometimes we have to realize things just happen and we must deal with them.
I’m fortunate to walk this journey, hand-in-hand, with a remarkable man: my husband, Noah. We tackle everything as a team. However, there are clearly different challenges for the caregiver versus the patient. The first night of the flare-up, I had trouble moving and we were both concerned. Being a caregiver and a patient is a balancing act. It’s hard for Noah because he wishes he could do more. It’s difficult for me to see his pain knowing how much he wants to help, yet there’s only so much he can do. I know I hide some of my physical pain from him and I’m sure he does the same with his emotions. It’s a tightrope we walk together. We learn as we go.
Even though, at times, rest is the best medicine for my back, it is hard to be still. When dealing with health issues, whether PKD or chronic pain, I always yearn for a sense of accomplishment at the end of the day, other than completing the health marathon of getting through each day with grace.
There is no manual for dealing with setbacks and health issues. There is no right or wrong. Some days will feel like we are floating on a comfy raft in the bay, while other days feel like we are thrown into a speedboat ripping through rough seas. I know some days I will listen to my body and other days I will push myself too hard. I tell myself that all of this is ok, because I am learning as I go.
What have you learned with any setbacks and/or health issues you have faced?
Hi Valen, good post as always. I’ve learned as I get older that health is actually the most important thing. It’s hard to do anything without good health, so despite its inconvenience, it’s critical to do what we can to take care of ourselves (physically and emotionally) so that everything else we want can happen. I know you do what you can and work very hard at it due to your increasing list of challenges. You have a lot of love around you to help, and that’s fantastic, of course.
Hi Dwight,
Thank you for sharing your insight. I completely agree that health is the most important thing in life. I continue to be grateful for the love that surrounds me and support from my PKD friends, like you.
Sending you love and light. You are so amazing! I enjoy and respect your posts!
Love,
Liza
Hi Liza,
Thank you so very much for your beautiful sentiments of support and encouragement.
Hugs!
Hi Valen,
I thought of some things that could possibly help with your pain. Meditation (consciously tensing and then relaxing the parts of your body from your head down to your toes), prayer, or even acupuncture. Also reiki (kind of a no hands massage done by a reiki healer). I’m a big believer in physical therapy, if you’re able to do it. Just keep thinking positive and you will get through it one day at a time! Good luck and feel better soon!
love,
Chris 🙂
Hi Christine,
Thank you for taking the time to share these suggestions. I did physical therapy for 22 months and was released to continue the routine on my own. I am currently doing Pilates and am hopeful it will help me. My husband’s mom is a massage therapist and practices reiki as well. She did reiki with me before. Unfortunately, she lives on the east coast and I’m in CA. I did try acupuncture prior to my back surgeries. I did not do well with it, but it may be better now that I am post surgery. I can see meditation being helpful. Thank you for your thoughtful message and well wishes.
Hugs!
As a caregiver, I chose to accept the situation be glad (after I went through the normal grieving stages, of course). There was about a year that I was angry and had a bad attitude, but I got over it thanks to my support system- friends, family, and awesome doctors & nurses! Thanks for sharing your gift of words, Valen. You still continue to make a big difference in the world! 😉
Hi Amy,
I appreciate you sharing your honest course of emotions that you went through. Thank you for being the special caregiver that you are and continuing to support and encourage me on my journey.
Hugs!
You stated this so well, Valen. I keep having to learn this lesson over and over again. My setbacks have been two total hip replacements due to all the Prednisone I’ve taken since my transplant, increasing pain in my native kidneys in recent months, three sinus surgeries which have changed my voice and my ability to sing, among other things. I overdo it some days and pay for it. My husband is also my caregiver and he looks out for me diligently and can usually tell what is wrong with me before I can. Each day is a gift from God and I’m thankful for all of them, good and bad. I learn from the bad ones and enjoy the good ones. Thank you for your blog and the way you encourage each of us.
Hi Jenny,
I am glad that you were able to connect with this post, but sorry to hear of all that you have and continue to endure. How long have you been on prednisone and what dosage do you take? I have been on prednisone almost 13 years and take 5mg a day. I’m so thankful that you have a wonderful husband. A supportive caregiver makes a world of difference on our journey. Thank you for your kind words and for sharing your positive thoughts and outlook on life.
You are so strong. I do hope you feel much better soon. Your posts are always full of helpful gems and are greatly appreciated.
Hi Ellen,
Thank you very much for your well wishes, thoughtful sentiments and encouragement for me to keep sharing my journey.
Hugs!
SO MANY OF US HAVE HEALTH ISSUES ALONG SIDE THE PKD. I HAVE A AUTO I MMUNE DISEASE CALLED GUILLIAN-BARRE SYNDROME. I WAS DIAGNOSED AT 32, I AM NOW 61. I WAS ABLE TO WALK FOR MANY YEARS UNTIL I HAD A RELAPSE AND NOW IN A WHEELCHAIR. I AM IN STAGE 4 PKD. I HAVE PAIN DAILY AND I FIND RESTING, LISTENING TO MUSIC AND TAKING A DRIVE WITH MY HUSBAND HELPS. MY HUSBAND CONSTANTLY TELLS ME HOW HE ADMIRES ME, HE IS THE BEST CARETAKER. A POSITIVE ATTITUDE IS EVERYTHING, I ALWAYS SAY THERE IS SOMEONE IN WORST SHAPE THAN ME, SOI CAN DO THIS. LISTEN TO YOUR BODY, KNOW WHEN TO REST.
Hi Jo,
Thank you for sharing what you endure and your wonderful advice. I too enjoy taking drives with my husband. I am glad that you have your husband to share this journey with. I respect your positive spirit as your continue to fight through so much. I wish you all the best!
My kidney transplant was in February this year. The kidney has been working just like it should since then. My creatinine is 0.9, which is excellent. However, I developed a lymphocele, which is not uncommon with renal transplants. The problem for me is I have not responded to the various treatments. I have had a drain in for several weeks, which in and of itself is no fun. For a time I had to flush it 3 times a day with a betadine/saline solution. That didn’t make a difference, so now I am receiving weekly tetracycline injections. With the dosage they are using now, they are quite painful. The worst part of all this is that I can’t go home. I live in St Croix, US Virgin Islands. My transplant center, because of work insurance, is in Oklahoma. Until this is resolved, I have to be in Oklahoma. I have had plenty of “poor me” time and a bit of crying here and there. But in the big picture, this is just a small blip. I have to remember how amazing it is that I have a strong, functioning kidney. I am receiving excellent medical care so I know this “issue” will be resolved.
Thank you, Valen, for your thoughts and uplifting messages. It helps. And I hope that you have a full recovery.
Catherine
Hi Catherine,
I am so sorry you are going through this and have to be so far away from home. It is wonderful to hear that you are receiving excellent medical care and I hope that you will be able to go home soon. A kidney transplant does give perspective on our lives. I feel the same way in that if my kidney is healthy, then I remain grateful and know that whatever the current issue may be, it is a health hiccup in the big picture of life.
Thank you for your well wishes and kind sentiments letting me know that sharing my story helps. That means a lot. Here’s hoping that you can go home real soon. Wishing you all the best!
I find it terribly difficult to deal with limitations, with loss of abilities to do things I used to do easily. (I’m in stage 4, no transplant or dialysis yet.) I just have to focus on the joys still available in life. It is hard to share feelings with the people around you; you don’t want to be the person who’s always sick…
Hi Dan,
I can completely relate. I am glad to hear that you have not faced dialysis or transplant yet. Enjoy every healthy day. I find it helpful to focus on what I can do rather than what I can’t. I hope this blog gives you an outlet to be open and share your feelings. Wishing you all the best!