A lot has been written about the opiate epidemic, but there seems to be very little about what it is like to live with true chronic pain. My husband, Jay, lived and died with incredible pain at the age of 58. As his wife, I lived that trip with him.
Jay is no longer here to tell his story, but I want the world to see what I saw. I want you to know how he went from working 60 hours a week doing intense physical work, until his pain got worse and he could not even get out of a chair on his own.
I want you to know about the deterioration that Jay suffered in the last ten years. I want you to know what a good day is like and a bad day when you live with chronic pain. I want you to know exactly what happened when the doctor decreased his pain medication. And I want you to know how my husband finally made the decision to commit suicide.
I want people to understand that when chronic pain runs through your life, eventually you just want the pain to stop.
First, a little history. I met Jay in 2005, when we both stopped drinking. Two years later, Jay began to lose sensation in his legs and began to have falls, as a result of the nerves compressed in his spine. The pain was so intense that Jay had to stop working and become incapacitated, which initiated his depressive episodes.
Jay had a series of fusion surgeries of the back and neck. It was then that he was prescribed for the first time analgesics, antidepressants and anti-anxiety drugs. From 2008 to 2011, Jay tried several treatments to control pain that persisted even after a third back surgery. These include steroid injections, nerve blocks and a spinal cord stimulator. Ultimately, they implanted a drug pump that released morphine, in addition to the pain pills that were prescribed.
In 2012, Jay was diagnosed with trauma-induced dementia. I think the diagnosis was correct, based on its symptoms, but not all doctors agreed. Some believed that the confusion was due to high doses of morphine and / or sleep apnea.
By 2016, Jay’s confusion and memory problems were increasing. He was taking a constant dose of 120 mg of morphine a day, in addition to the medication he was receiving from his pain pump.
Jay’s depression seemed to come and go, depending on the day and his pain levels. He was weaned on his Xanax at 2 mg per day to help him sleep. I was aware of the risks of combining Xanax and morphine.
Let me tell you how it was a good day before they changed their medications. I worked a full time job from 2 pm to 10 pm five days a week. I would get home and Jay would make my coffee at night. We stayed awake and watching television until 2 or so. When bedtime came, I went to bed and he slept in his recliner.
We started sleeping separately after his first surgery in 2007. He was more comfortable sitting in the chair, but could never sleep more than three hours in a row. I knew that sleeping in bed would keep me awake.
A good day always meant it was not cold or raining. On a good morning, he would get up first and start drinking coffee. He would take our two miniature clothes pegs out on the patio with his leash to go to the bathroom.
Usually, we had at least one appointment per week, but if not, we could have a quiet and pleasant morning. That meant coffee in front of the TV. After a couple of hours of that, he could move on to playing his computer games, but he was never far from his chair.
A typical adventure for us would involve going to Walmart. Jay could not walk around the store, but he hated using disabled cars. He could always see a look on his face when he had to. After going to the store, we could have lunch or dinner early at Steak n Shake or Cracker Barrel. He always needed to be a familiar and comfortable place for him. More than once we sat down, ordered and then brought our food home because he had too much pain.
In summer we could walk the dogs after dinner. Just a quick walk of two blocks, but many times you would have to stop halfway and go home. A couple of times I had to go get the car and pick it up because his legs just did not support him anymore.