So, here I sit with unrelenting, multitudinous pains filling my body from head to toe. Sure, the Lyme bacteria might be gone, but the Bartonella is a whole new story. It's so deep in my neurological system that I wonder if it will ever die off. I feel hot on the inside while the nerve endings in my skin try to convince my brain I'm cold. Chills race up and down me now and then, but I have no fever. The prickly, tingly, itchy, numbing sensations are body-wide and will not go away.
I quit taking my antibiotics for a month because the pancreatitis was acting up again and my liver wasn't too happy. Like it or not, I'm going to have to start them back up. So many pains different and distinct from one another. Its exhausting to deal with. Its enough to drop a grown man to his knees. I'd love to crawl in my bed and stay there for days. Why is it that any normal bacterial infection is considered life threatening, yet this is not? (It's an intracellular parasitic bacteria.) So, I'm not running a fever. Could it be that my immune system is too low and too whacked out that it doesn't know it should be running a fever?
I've been struggling much with anger. I'm tired of fighting a losing battle. I was supposed to be done with treatment. I knew I wouldn't be but how do you tell a doctor that? Of course, it doesn't help that I only see him twice a year. I'm considering finding someone local. I just dread all the tests they'll want to run with the diagnosis coming back "normal." What am I to do? I have no idea. I don't want to run up unnecessary medical bills. I only want the necessary ones. Don't really want them, but I'll gladly pay for services that help.
Its rather frustrating to know there are bugs inside me, killing me slowly and there's really nothing I can do about it. Its frustrating to know that people don't get it and look at me like I've lost my mind when I try to explain it. After all, I look healthy. Right? What could possibly be so bad about this disease? If there really is a disease, that is...
I know God has a purpose in allowing this, but that doesn't make the pain less painful, the fatigue less tiring, or the emotional state less spastic. It doesn't help me get the dishes done. It doesn't cook dinner for me. It doesn't keep up with the laundry and vacuuming and picking up for six people. It doesn't meet my family's needs. I still have duties to fulfill. I still have to live - all the while my body is dying a torturous death that nobody else can see or ever fathom (except those who are suffering with the same).
Lately, joy and hope have evaded me. Even "there is a season for every purpose under heaven..." doesn't bring me comfort. At one time, it brought me hope that this was indeed a season in my life and I would one day be healed. But now it seems as if my whole life will be stuck in this season. That death is the only escape. And I don't want death to be just an escape. I would much rather look forward to being with Christ than look forward to escaping a living hell.
But what if my whole life is to be stuck in this season - this torturous existence? Am I willing to endure to the end? How do I find my bearings to get through life in a way that glorifies my Lord? Will this bitterness ever go away? I don't want to be a bitter angry person. I want to experience joy and hope again. I don't ask for all the world has to offer. I just want to live. But I don't know what that looks like. How do I live when I'm barely surviving? I feel like such a failure in everything I do. I'm handicapped, yet nobody really knows that but me. People expect things. If you don't live up to those expectations, you're seen as self-centered, lazy, neglectful... not a good Christian wife and mom.
I'm tired of always needing and never being able to give back. Is this pride? I don't know. I want to do for others, so I don't think its totally pride.
I was thinking yesterday on the way home from the pharmacy... I was saved at such a young age that I never experienced what many do - the full weight of their sinfulness. So, I wondered. Disease is a result of sin - the fall of man. Is this God's way of showing me how horrible and destructive sin is and how all-encompassing the effect of sin is? Or does he simply want me to bear others' burdens with them, to be able to comfort and encourage others who struggle with the illness? I don't know.
I know he is surprised by nothing. I know he is always good. I know he takes everything bad and makes it beautiful in its time. I know he never wastes pain. I'm just struggling with how to live a life pleasing to him, a life looking forward to glory, a life showing his love to others when I can barely raise my own head. When the suffering becomes so great that I am forced to think of myself and the moment, taking away from what I could be doing for others.. How do I live a life for Christ in an isolated existence? Is this the cross Christ has given me to carry? If so, to what purpose?
So many questions - God isn't obligated to answer any of them. So many tears - there seem to be no end. So much pain - no hope that it will ever go away. Until heaven. If only I could catch a glimpse of glory big enough to sustain me, to give me the hope I need to endure until then...
~Forever His...
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Your page came up on a google search and all I can say is, "I could have written that." The words you spoke are mine exactly. After 25+ years undiagnosed, I finally found out in August (2011) that I have Lyme Disease. All the years of guilt, self-condemnation and confusion for why I feel like I do, are finally being dispelled but thus far the treatment has only made me worse. I thank God daily for the diagnosis (the truth has been made known!), but I come to find myself asking the same questions you're asking- Where do I put my hope if there is no certainty that I will ever heal? Without certainty, is it wrong or selfish to look forward to the peace that death will bring? What's God's call for me in the meantime irregardless of outcome? And ultimately, what is God's purpose in it all for both me and for his kingdom? So thanks for posting. It's always comforting to know I'm not alone!
Hugs, Zinniacity!
Linnette, you are a lovely writer and I am deeply moved by your post, as I have been by others you have written in the past, but this evening I am returning to thank you for sharing your experience of Lyme disease in the context of your faith. I have been suffering the effects of Lyme disease for almost five years now myself, and I am grateful for your blog.
Sandra, thank you for your sweet words! It's nice to know my experiences are not in vain. We must stick together! Hold each other up! You are welcome to join my Lyme page of Facebook if you'd like to interact more freely with me. Lyme Support: facebook.com/pages/Lyme-Support/313410885362828
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