There are nights, like last night, where the world closes in on me and I cannot find peace. I rarely ever let my illness and conditions get the best of me. But it does happen. I started to spiral down a deep and gloomy place. At 3 am all the Christmas lights were off so I sat alone in the dark. I felt my heart breaking as I thought that this could be my last Christmas. I had been feeling this sadness as a shadow that had been creeping behind me the last couple of weeks. I realized that even if I live on, my Christmases would be limited in number, just because of my age. The specter of dialysis loomed in the corner along with other fears of the complications that could arise. Fear had won. I unleashed a torrent of tears.
Why am I sharing these depressing thoughts with you all? Because I know others have felt this, especially newly diagnosed patients who are still coming to grips with a chronic illness. It is normal. I am sharing this because I am human, as are you. And we need connection. I am sharing this because there are times even now, when things get to me. I usually feel guilty and weak when that happens, so I hold it all in. Until I have a night like last night were the daemons win.
Being diagnosed with a chronic illness does not mean a death sentence. But it is a life changer. And when we lose something like our old lifestyle, we need to grieve. There are stages to grief, which include denial, anger, bargaining, depression and acceptance. We bounce from stage to stage for a while and then settle hopefully into acceptance. But that does not mean you won’t revisit anger or depression from time to time. And that is ok too. I always say you need to have “ups” to know when you are down and you need “downs” to know how good “up” really is. Just do not get stuck in either.
As the sun rose and the light grew brighter, so did my mood. Now with the lights on the tree twinkling their happy song, my mood has reverted to its more hopeful and cheerful state. The snow is coming down and a nap is in my near future. My hubby and I have plans for a quiet movie night with our furkids on our laps. All is well.
I want to wish everyone a Happy and Healthy New Year. I am so grateful for this forum and the wonderful people who participate. The support is amazing. The friendships are a gift. It is an oasis in a scary and troubled world. I am glad you are all here with me in this journey.
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Bassetmommer
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And happy new year to you. All we can do is take one day at a time. Today I have been on peritoneal dialysis for exactly two months. It's very time consuming as I am on manuals 4 times a day. But I am so grateful to live at a time in history when dialysis is available. I do have dark days but nowhere near as many as I did when I was living from blood test to blood test and just seeing my kidney function decline. Thanks to this forum for all the support over the last year.
Very Happy New Year to you too. It’s so encouraging to hear that PD has been a good option for you. Yes one day at a time. My prayers🙏
I've also traveled down that road as have countless others. Hang in there. I'm also making it a movie night. Actually a double-feature. Coupe de Ville and Shag, The Movie.
It’s so true: we need to experience the bad to appreciate the good. I have recently had similar thoughts to you, Bassetmommer, querying “last Christmas” but more in relation to my hubby than myself. He is battling advanced prostate cancer to the bones, is in pain and about to start yet another new treatment. But so important to try and take each new day as it comes and make the most of each new day.
Lots of happy New Year wishes to you and to all on this friendly and comforting forum.
Many people who have chronic illnesses question their own mortality among other things and feel the sadness and frustration that you did on that Christmas.
Feelings are part of being human, very normal and one is entitled to them. Thank you for sharing them.
I agree with your elegantly stated advice to breathe and look for the "up's" and try to move back into that place when disdain and darkness fills our hearts.
Unfortunately, in this life age isn't always a factor in how many days we have.
I recently read a true story about WWII pilot who was grounded due to chronic illness. He lived until 91 years old. How you spend those days and how you view them is what counts.
My grandmother always told me that life is measured in many things; the appreciation of small things in life and the blessings of friends to love you for yourself and stand by you.
When the circle is complete, you are called back. Don't look for the end of the circle, look for the rise of the sun; that every day is "another day of living".
She passed @ 99 years old as a result of a chronic lung disorder - a month after we changed our wedding location to have her in attendance. I carry her wisdom in my heart even on the worst and most frustrating days.
I am so glad that the sun rose bringing you the bright lights of hope; that is what it is all about. You are a wonderful, intelligent and most giving woman. You make vast differences. Keep that thought.
My husband joins me in extending you and your family as well as all of the other community members a Healthy, Happy New Year filled with discovery, happiness and love.
Look for that rising sun and the softness of a peach rose.
Thanks so much for sharing. Sending hugs and prayers. You have been a pillar of strength to so many of us. Your inspiring, uplifting posts have given us all hope, now your tears do that too. Even in this you give a message of hope: a beautiful dawn is always around the corner. Enjoy the movie and the togetherness. There is so much to be grateful for including your being part of this forum🙏❤️ Happy and healthy New Year🌹
As we age and have chronic conditions our thoughts run the gamut. Then I become thankful for the health I do have. Each year becomes more precious. Thanks for sharing your thoughts.
I just started seeing a therapist last week as I have trouble with clinical depression and have an anxiety disorder. I am thankful for this site as I have learned that just because you hit stage 4 or 5 that doesn't mean you have to instantly start dialysis. I was mad at my doctor thinking he wasn't reacting enough to get me set up. I had vein mapping last week also and am awaiting to see a vascular surgeon about a fistula, which I know takes months to heal. This site has given me hope as some on here have gone 5 years or more without starting dialysis. I got my blood pressure under control by quitting smoking. My lastest test results: BUN/Creatinine Ratio 15.3, Creatinine 3.27, EGFR 15, Microalbumin Urine 128, Creatinine Urine 487, and Albumin/Creatinine Urine 263. I don't know what all the numbers mean but they have been better and worse over the summer. I don't think I drink enough and was hospitalized for dehydration in November. I wish you good luck. One Day At A Time! I also have neuropathy in my right leg, sleep apnea, restless leg syndrome, hypophosphatemia, and gout at times.
All I can say Bassetmommer is thank you for expressing so beautifully what I have been experiencing periodically. Echoing what you & others have said, I spend a fair amount of my energy seeking the “little things”, mindfully figuring out what helps keeps the demons at bay *most* nights, pursuing health actively, developing & fanning the flames of my new interests & pursuits.
About 4 years ago, I decided I needed to design a life for myself that was so wonderful it would give me a burning passion to continue even if things turned south. I think I’m 99% there - and I find that reassuring.
Your honesty touched me deeply. Big hugs to you Bassetmommer. I’m
No stranger to grief, and once I found it is transient...I feared it less. 💕
All my best in 2920 to you & all of you in this group. You have helped me many, many times. Mr Kidney: a shout out to you too for your articulation that we assemble our medical team & decide who remains in it. I cannot thank you enough for that extremely sage advice/perspective.
Thank you for your post. I have been there too. It used to wake me up about 3am and keep me awake. My doctor got me a CBT therapist and it has helped.
About 20 years ago I was visiting a friend in NYC and one of her friends from San Francisco came. Peter had been HIV positive for 5 years. We went to the pub and I asked him how he could be so cheerful with his condition. I'll never forget his answer. He said we are all going to die, me sooner than most, but I still have ambitious and plans, and that's where I live. I flew back to Ireland a few days later and six weeks later I heard that Peter was killed in a car crash.
Peter could have spent 5 years worrying and depressed but he didn't... instead he chose to be positive!
For me it was one of life's lessons, but sometimes I forget.
Best wishes for the new year, you'll always find help and support on this forum 😃
How was the movie? My fur-child and I enjoyed watching two movies last night too🐶
Dec 31st was my mother’s birthday. She passed away 22 years ago. When she became terminally ill with colorectal cancer, she and I watched several movies together. Two of our favorites were:
Casablanca
Singin’ in the Rain
So Izzy (my fur-child) and I watched both in memory of my mom.
You hit the nail on the head! I too have those days as dialysis is closing in. I have thought of all the things you said. Life never being the same. At times it seems too much to bear and I just cry. At times I think I can do this, I am strong. Other times I think, I’m so weak I can’t do this. Why me? Why does everything have to be so hard for me? Of course I have no answer. It’s just the way things turned out. I have to accept it and move on. Just seems like obstacle after obstacle is thrown in my path every day. Everything is a battle including getting my medication. Why???? Then I pray and I make it through and am once again optimistic, til the next time. It’s a never ending cycle. I pray for you that you find peace and go to a bright place and stay. The mental aspects of this disease are greater than the physical for me.
I am, among other things, a former special education teacher who worked with students with severe emotional disorders and also a music therapist who worked with adolescents and adults. So it’s likely not surprising that I often turn to music as one of several ways I manage my own stress. (Exercise, sleep, meditation, and connecting with friends are also key parts of my stress management system...) So I have a list of music videos I watch and listen to while using my elliptical machine. The music video below captures a lot of what I’ve experienced as I’ve tried to manage my CKD. Maybe it will be of some help for some participating in this forum:
Yes, the lyrics in this song in particular seem to best capture what I’ve been feeling on and off. And yet the song as a whole is fairly upbeat and encouraging for me.
My thought is that I'm 80 and CKD4 due to one kidney removed due to cancer. I may change my mind when the time comes, but should I lose my remaining kidney, I'm thinking I would rather have palliative care until death instead of starting hemodialysis. My biggest concern is ...am I in Jesus' Book of Life,? allowing entry into paradise.
I’d definitely think God would honor your decision on this. But each of us likely have slightly different thoughts about that issue. For me, on a personal level, I know when I would chose palliative care as well. I have talked with my pastor about my thinking. She has concurred with my thinking that God would honor that decision should I find myself facing it at some point in the future.
I guess that is why they call Kidney Disease a JOURNEY. Sometimes the journey is going well and sometimes not so well. It is hard to stay positive when everything seems to be crashing down all around you. I think that is why it is so important to have faith and a belief in GOD and that things will get better!
God bless you! I hope you have a blessed and healthy new year. I feel the same at times worrying about my husband and what lies ahead for him. I always find comfort and peace in gods word and promise, he’s my only hope. Just remember you’re not alone if you ever need to talk or vent you can reach out to me and I will do my best to offer encouragement. God is still on the throne and works miracles every day. All we have to do is believe that he can. Happy 2020 to you!
While I feel deep empathy for you , I also want to thank you for this post. I guess I knew deep down that I am not the only one that has these deep feelings, but you also posted positive thoughts that I will try to remember. I need you to be around for quite a few years now... so hang in there. You have so much knowledge and compasion for others. That makes you very special to many here.
Whenever you start falling again... stop where you are and put on a movie to watch. One that will bring you up and give you hope again. Or put on music like Jayhawker suggested. Or come online and see if there is any of your friends online. If so, I know they will be there for you.
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