Sharing with my followers a page from my daily diary…
A myeloma diagnosis can drastically affect the quality of one’s life. The disease gives me a feeling of isolation and being alone.
Myeloma has had a significant effect on the quality of my life, as well as my emotional well-being. I am managing it and have a close and meaningful relationship and conversations with my doctor. She has me on treatments that work and is slow in progression. She is my “rock.”
“Quality of life” is a broad term that describes a range of topics on exactly how myeloma affects the quality of my life or anyone’s life. Despite the impact of myeloma, I do everything humanly possible to make living with the condition more manageable.
About 99% of the time, I feel anxious and depressed, and stressed. I find it hard to exercise; mostly, it is slow walking, along with everyday chores in my apartment. I have no social life; it is difficult when you must ask someone else to drive you anywhere, including doctor and treatment appointments. I feel that most days, I am isolated and alone.
My circle of people has grown smaller over the past two years. I try not to let that stress me out, as stress is a killer too. On top of all the things that harm one who has MM is the unrelenting pain; it never goes away; it goes up and down in degrees. Like the medical team that works with me, always ask on a scale of 0 to 10 how your pain is. I always answer that it depends on what time of day it is and what I have done to aggravate my body. On a good day, my pain level is a 5; on a bad day, it is off the charts.
I know my doctor is trying to slow down the disease. I have great emotional support from most of my children and grandchildren; they have become why I continue to fight. The disease has also caused the family to pull away. I do not fault them; watching a loved one slowly die must be very difficult. My sons and grandchildren allow me to talk to them about my dying. Everyone should stop thinking that death is all I truly know to be certain in my life. Dying is like a divorce; no one wants to talk about it, hoping it will go away, that time will take care of it.
I write this to hope that if you have someone in your life that has or is dying from any disease or reason when these relatives ask, you say, “I am OK?” Well, that means that we are in control of the pain. It never goes away.
The dying individual does not want pity; they do not want anything but your love. They want ask for anything but listen if they talk to you. Take the time to remember that they were once active people who have been thrown into the pits of fiery hell because of their sickness.
May each of you have a great Wednesday. E.
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