Today is a bad day. I find the stimulation that failed was doing more and more then I ever realized. I awake with the eye swollen, already in discomfort. While the stimulator was working I needed to use my eye before the pain spoke up.
I was supposed to go out and do some politicking. I was looking forward to it, a chance to be outside and meet new people, be a part of, something way too rare in my life. When I awakened my eye said No. This is not a day to use your eyes. Already I am hurting, it can only go downhill from here.
I find I make my decisions now on how much codeine will I have to take if I do thus and so. Is it worth it?
Angry at myself, at the pain, and what my life has become because of it, and how much harder it is now that the implant failed, I need an answer. I have to do...something.
The implant has been off for weeks, months now I think. Sometimes I still get a tiny flicker of stimulation. Tha Medtronic representative tells me there may be a short circuit, other people have also called to say even when off they can feel the stimulation.
I feel it less and less, almost completely gone by now. I remember why I first turned it off, why I call it 'failed'. The stimulation went awry, horribly strong and not where it was supposed to be. It had scared me and hurt me. I had to turn it off. One day the sensation almost brought me to my knees. I was truly afraid of it.
I wanted to go this morning. I did not want to take more codeine. I did not want the extra pain of being with others and having to use my eye, a lot. I also did not want to be alone. I see myself getting back to the going out less days, not wanting the pain, not wanting the drug or drugged sensation.
I went to my bureau drawer and took out the computer for the implant. The one that turns it on and lets me choose how it will work. I searched for the magnet that you are supposed to always carry with you, a just in case, the magnet immediately turning it off when it comes close or in contact with the battery in my chest. The magnet was not where I remembered putting it. It was not a frenzied search but a desperate one. Out of the corner of my eye I found it. Eureka!! I hurried back to the bed where the computer lay. I put the magnet down, a few feet away but close enough if I needed it quickly. My hand reached for the computer and the 'on' button.
Wait!, my mind yelled out. Remember how it felt when it was on? Yes. I do, but I will put it on at the lowest level of stimulation. That should work. And what level was it on when it did those awful things? Oh right, it was on the lowest level possible. My face scrunched up, Oh (*&%#. Do you still want to turn it on? I did but the fear outweighed the need. I picked up the computer and put it back in the drawer.
I have said many times, to many people, and here too, "Do not let the pain make your decisions for you as hard as that may be." I almost fell into that trap today.
Sometimes the pain is so loud it is the only sound that gets through.
It is very hard to do but when it happens we need to find the pillow within, whatever that may be: a voice, a memory, a feeling, a something specific to you, strong enough and loud enough to drown it out.