My trigeminal neuralgia is now mainly eye usage and eye movement pain. It is what keeps me disabled.
Any consistent eye usage, such as reading for more then 10 – 20 minutes causes horrendous pain. It can take hours to resolve, and does so only by my lying still and trying not to use my eyes at all.
My father refused to accept that I could not work. “I have seen you read, so I know you can,” he told me. His meaning was clear.
You can do it anytime you want for as long as you want, you just don’t want to.
I do want to. My inability to do so is not a decision I made, or an excuse for laziness or malingering. How do you explain that, especially to someone who does not want to believe?
So many of us have had this experience.
I saw you grocery shop so I know you can.
You can plug in almost any activity. It all boils down to the same thing. You did it then, so you can do it now.
It is an issue of quantity. How do you quantify the pain and what we can and cannot do?
There are certain things that are constant: A knee that doesn’t bend is always not going to bend. A constant that interferes with your life and activities will always interfere. It is the pain that lacks constancy that is the problem.
I am a perfect example. People often suggest that I set a timer when I am using the computer or doing other eye involved work. As soon as it dings I am to stop – no matter what I am doing.
Some days that works. Other days either the eye is doing very well at the end of the time frame or the pain has gone beyond tolerable way before the time is up.
It is not always time that is the enemy.
I try to clean out my email inbox, often a daunting task. Some days it is easy. Other days emptying out the same amount of mail triggers the pain quickly. Why? What is the difference?
It comes down to deciding whether I read what has been sent or deleting most of it. Deleting for 20 minutes is nothing, because I have not really used my eye. But reading emails for 20 minutes is a mountain of time, a monumental struggle to get to the last of the messages.
Other chronic pain disorders have the same issue.
Yesterday the pain was not as bad and I could clean the house, go out with friends.
Today it is a 9 or 10 on the pain scale. It is all I can do to get out of a chair or make the bed.
It is very difficult to explain this to others. For most folks what they could do today they could do yesterday and they can do it tomorrow.
Pain has made us unlike most people. What we can do today is the success. Being able to do it tomorrow is the hope.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.