Tuesday, November 13, 2012
The burglary of my self-being
A blog post by a fellow Lymie, Kevin, about his suicidal thoughts made me think I should post this, in case other Lymies are reading my blog, just so they won't feel alone if they have similar thoughts. Suicide is, after all, the leading cause of death among Lymies so we have to stand strong!
I'm sitting in bed, fighting nausea and the shakes after adding the Tinidazole to the protocol today. Might as well post to the blog!
So here goes:
(written on June 22, 2011, but then only shared with a few very close friends until now. The title of this blog post comes from a comment by Nyree, a friend in Sweden.)
...... I tried to write this down last night, taking about 2 hours or more.
Several of my fellow Lymies are in wheelchairs or use canes. Others get uncontrollable ticks and large movements of head or limbs. Other people notice. The disease has stolen their mobility, their balance, and their wholeness. They no longer fit the "normal" or blended profile. Something is visibly off. They can explain about the disease and those who care to listen and take note, can easily see the ravages the disease left on the body. They can ask for help and get it.
This disease takes a heavy toll on everything, including family life, friendships, the economy and most of all, the self image of the victim.
The last two or three weeks, I've been trying to communicate my feelings to husband and friends. But they don't seem to get it. And I don't know how else to explain without sounding whiny and even more pathetic. The guilt doesn't help. There are so many others who have it worse, are battling cancer, loss of limbs, loss of eyesight or hearing and having to adapt in a changed reality. I'm not trying to create sympathy or pity.
A few weeks ago, a large, complex project was put in front of us to quote on. I looked things over and knew I was unequipped to do the job. Even with help, tutorials, studies and all sorts of help, I knew and tried to explain that I was out of my depth and that we shouldn't accept the job.
The men in their infinite wisdom thought that pushing me harder will create job satisfaction and create a sense of my being needed. I was hoping and praying we wouldn't get the job. But we did.
Even during the first sit-down to discuss the outline of the project with the client, I said several times that I could not do it, the time line is not enough to master the three difficult, involved programs as would be needed to do the job properly. Granted, if it could be done, it would be kudos for the company as well as bragging rights.
I've spent days trying to learn the ins and outs of these programs (Photoshop, Dreamweaver, Joomla, PHP). While I managed the first part in PS reasonably enough, that was only the start. But now the slightest thing takes hours to try and understand, then to execute and by the time I get to the second part, I have to go over the first part again because it is somehow gone from my brain. It is like frying eggs over and over again and losing them between slipping from the pan to the plate. Before, I could read something and recall it effortlessly, often complete with a "picture" of the page in my mind with page numbers, pictures and such intact.
The stress of fighting my sick brain is becoming unbearable. Trying to keep up the pretense of "all is well", trying to hold it together while inside I'm screaming, angry, afraid, frustrated, emotionally drained and pawing through reams of sentences that make no sense after reading several times.
I find myself thinking almost constant thoughts of self-destruction, wondering if it is all worth it and just wanting to curl up and stay in bed, only getting up to do the same things over and over again. Even cooking is a challenge. I can't follow a recipe any more, even though I've been cooking since age 7.
Cold and calculated thoughts of suicide are taking over my days and thoughts. When I was driving to the hospital for allergy testing along a very busy highway, I had to fight the impulse to steer the car into what should be termed a "fatal single-car crash". If I should do that, with everyone knowing about my fear of driving on that particular highway, who would know it wasn't an accident?
That's one example. There were many more but I won't get graphic. I didn't tell anyone. This happened over several days in different places, clearly seeing different scenarios. Sometimes I pulled off the road, got out, went to a Tim Hortons or just looked at the area around me while trying to breathe deeply, trying to get pleasure in the views I love so much in this adopted country of ours. I had to fight constantly by holding up thoughts of my supportive husband and sons.
Finally I realized I was in deep trouble and went to talk to my doctor. At first he thought I was talking about minor thoughts, but then he started asking more probing questions and I could see his face and attitude change. When I burst into uncontrollable tears and described episodes of high anxiety, difficulty breathing and inability to focus, he became very serious. He has known me very well for years, and before Lyme disease was diagnosed, I saw him almost weekly with all the various ailments. I've always been very positive and am not an anxious person.
My doctor believed me and prescribed something to help, despite knowing my aversion to all these mind-altering drugs. He told me I needed help and being aware of the situation is not enough. He also told me that he would make arrangements so that I could call for immediate help if I get to a place or situation where the suicidal thoughts threaten to overcome me.
Trying to write down these thoughts or stories is not easy. I keep wandering away from the laptop, doing something else, losing the train of thought and fighting the rushing of tears at the uselessness of it all.
There was a time when I could write stories or read things, retain the information, recall it effortlessly, and understand the logical steps to get a task done.
I've lost that. And nobody seems to understand the depth of that loss. They try to assure me that it is not that bad, that they haven't noticed a change.
If I could put my brain in a wheelchair and just let it heal for a while, visible to others, getting the help needed, there might be hope again. But right now, I have a brain injury and am coping with loss, grief, heartache, pain, sadness and emotional distress.
How will they understand without being inside my head? How can I explain to others so that I could have the time to heal a little, however long it takes?