March 26, 2019
Since this began a bit over seven months ago, I have tried to portray an honest look into my life and dealing with the aftermath of a traumatic brain injury. Many of you asked how best pray so; I want to give you a clear picture of what I am dealing with daily.
I expected my recovery to be uneventful. The doctors and therapists told me that if I worked hard, I should expect to lead a normal life. With the exception of a neuropsychologist, no one talked about what I may experience in the days, months, and years ahead. With that statement, he was only talking about my emotions and how they might affect my judgment. When I checked out of rehab at the end of September, I was optimistic.
In the months that have followed a number of severe side effects began to emerge. Although much better now, my left shoulder became dislocated. The muscles that kept that joints intact no longer supported the weight of my arm. Sleeping was difficult, and any movement was extremely uncomfortable. After some prodding (and a bit of complaining,) the physical and occupational therapists began to focus some attention on strengthening that area of my upper body.
Back in early November, something began to change in terms of pain. The stroke itself (at least in my case) was not painful, but in very rare instances it can lead to Central Pain Syndrome:
Central Pain Syndrome (CPS) is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by a stroke… The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central Pain Syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central Pain Syndrome often begins shortly after the causative injury or damage but may be delayed by months or even years, especially if it is related to post-stroke pain.
Yes, it is as unpleasant as it sounds. Depending on the time of day the simplest of touch feels like being cut. At times, it feels like an electrical current running through my person. My body is unable to regulate between being hot or cold. The intensity is worse when I am tired or overstimulated. When I get home, I can be grumpy and want to hibernate. Quiet is my friend.
I have been battling depression now for seven months. At times; it can be crippling. I saw a neurologist in February who advised me that CPS could be permanent. That was hard to hear. The medication prescribed to help with it had a side effect of swelling on my affected side. Within a short period of time I gained 10 pounds and no longer could quickly put on my shoes. That particular medication has been replaced with another that does not have the undesired side effect, but it also has not stemmed this phantom pain.
Another major shift has been learning to deal with overstimulation. Those of you who know me well understand that I am an extrovert. Years ago when I took the Myers-Briggs personality assessment, the result showed I am an extreme extrovert and an extreme feeler. Being around people has always been something that energizes me, but at the moment it is doing the complete opposite. The past few days have been filled with conversation and social gatherings. I love being with people, but find myself dealing with exhaustion which amplifies CPS. It is a bit of a vicious circle. Next week I will be at a gathering of 5000 pastors that I have attended for the last nine years. It’s loud, fun, and inspiring. I’m not so sure how long I will last.
I am sorry this post is a bit of a downer, but I wanted everyone to know what precisely I am dealing with and ask you to please pray that this will go away. I am thankful that I have friends who care about us and pray for us. I do believe God gives us the st