Lyme disease (not to mention its coinfections) cannot be fought alone. The old saying that “It takes a village to raise a child” is 100% applicable to tickborne illnesses. Because in a way the road to health and remission requires a complete overhaul of one’s self, sense of self and everything that you ever knew. It will leave you more broken than you can remember being, more broken than you thought you could be. You will be a child again, the severity dependent upon, the severity of which the disease has hijacked your life. For those on the severe end of the scale, the 20-30% of the sickest patients (like myself) you will wonder how you will survive, how you can possibly endure it, let alone reach a state of remission.
When I began this treatment journey (I was on it before I even had a name for what was wrong with me) I thought I could do it all on my own. It was my health, my life and I was strong enough to win my way to an “old me.” Then things went from bad to worse. I still had my family and my friends and I valued every moment with them, every thought, every prayer they sent me, every visit I received. I was blessed.
What I was not prepared for, what no one told me, is that they wouldn’t be around forever. That I was going to change in every aspect of myself. I had been reduced to a child, barely capable taking care of herself in even the most menial of ways. I was going to have to grow up all over again, grow up in an expedited fashion and along the way I would see the ghosts of myself, my friends and family and this is what I would be left with.
People love you when you are “less than.” When you are a doormat. When you can be controlled. When you are sick. When you are helpless. It is a rare soul that will love you when you are all of those and none of those at the same time. That is what unconditional love is.
Most people don’t handle the sickness of others well. They don’t know how to relate or simple can’t handle what sickness does to a person. It doesn’t matter the type of sickness, most people just need to “wait it out” and then maybe, if too much time hasn’t passed and you’re still the same “you” they may return. But major sickness changes a person. It changes them in a way that cannot be undone, it is a bell that cannot be unrung. So where do the sick find their support?
One must have a strong sense of survival first and foremost. This will sustain you in your darkest of hours and when you are alone in every sense of the word. Survival is built into our DNA. Even when we try to escape it because we think we can no longer endure, we some how are compelled, at times kicking and screaming, to go on. But survival does not guarantee life and/or quality of life.
I have been at the end of my rope, holding on with one hand, begging for the courage to let go. There were times I cursed my brother (who passed away 3 years ago very suddenly) for being gone. I know that my brother was a tortured soul, that he struggled for almost all of his life and that he, not at his own hand, left this world. At the time I rationalized that it was God’s will, that his work here was finished. I, again, believe in that. But there were many, many times when I was angry at both him and God for taking him and leaving me here to suffer in sickness for so many years (most without the true identity of my illness.) I wanted him back, not just to be back but so that I could go. My mother was the only thing that kept my survival alive. I could not leave her. I could not let her lose two children. That would have destroyed her. Yet as much as she was my reason for not letting go, I was angry at the fact that I was holding on for her and her alone. I did not think I could handle treatment and having an incurable disease for the rest of my life, a disease that is still hotly debated as “non existent.” I was losing every thing I once loved and stopped caring about the rest. Looking back I count my blessings because without my mother and my strong sense of survival, I would not be typing this today. I would not be among one of the lucky ones.
There is a very real epidemic within the Lyme community that is even darker than the disease and treatment itself and that is the high suicide rate. Many are never properly diagnosed until they are dead and the sphirochetes are found in the brain. Many cannot survive treatment because of what it does to the mind, let alone the body. That is why it is so important that if someone you know is diagnosed (even if they’ve been diagnosised with numerous other things – which is most common) that you believe them. You support them in anyway you can, because you may lose them if you don’t. Not every one is strong enough to hang on, even with their best efforts or even with the best of support systems. They will be sick. But they may look normal and at times even act normal, but don’t think for one second that they aren’t struggling in more ways than you can ever know, more than they could ever explain even if they chose to try.
The longer I am in treatment the more isolating it is. Those that were there in the beginning see the physical improvements. They sometimes see the mental ones too, but that just creates a false sense of reality to them. My family has abandoned me with few exception. My friends fall into the same category. I know that treatment is hard on me. But I also realize that it has made me unbearable at times. I try but I am still learning. I’m trying to stay centered and focus on my core beliefs as that is all I’m capable of at this very moment in my life.
I’m dosing again (this is my first week of two.) Physically, it hasn’t been rough but each day that passes I can feel it wreaking havoc on my brain. I’m emotionally and mentally herxing. I’ve been crying at just about everything, even the things that are supposed to make me happy. Everyone, everything, my self included, is getting on my last nerve. I want…I want… I want to be better.
After my last phone consult with my doctor, I got good news that remission may be closer than I once thought. My system is so stable from Purium that they are hitting my disease hard, as hard as they can to knock this stuff out of me and to get me to remission. But even that is not sustaining me now. I can see the light at the end of the tunnel IF I step out of myself. I’m living day to day, minute by minute sometimes. Waiting for the day to be over because that is one day I am closer to my goal. The days pass, but too slowly for comfort. I am more alone than I think I have ever been. I spend the vast majority of my days completely alone with barely any phone contact. I’m doing what I’m supposed to, resting in bed (or on the couch) allowing my body to fight against the disease with as much energy as I can give it.
I have a few people left, but its so much for them, I feel that I can’t put it all on just a few. I’m fighting the urge to hold it all in. I know if I do I’ll explode or go to my darkest place again and I don’t want to go there, moreover I can’t. I’ve said it before and I’ll say it again “DON’T LET THE BASTARDS WIN!!!” I’m fighting with all I’ve got. I still pray that “all I’ve got” is still enough.
What I want people to know from this is that mental illness (in all shapes, forms and sizes) is VERY REAL! Like anyone else fighting mental illness, I have no control over what is happening inside my brain. My brain is literally being used as food for my disease. There is war raging inside the confines of my skull: disease versus treatment. Which one will win? Treatment will because it has to win. I don’t have another option. I can’t make the Great Escape.
I’m right there with you in everyway, everyday. It occurred to me lately that the “goal” in Lyme disease is to survive. We are alive and transformed. We are winning.
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Keep fighting! I can relate so much to the isolation. But it will get better.