On my most horrible days, I am a shell of the person I want to be. I feel useless because I don't have enough energy to do anything. Because my husband has to leave me in the car while he runs into the store and does all the grocery shopping. Because I have to lay down as soon as we get home while my husband puts everything away and then makes all of our meals. Because I am in too much pain to enjoy doing anything and I feel like my tears are a burden to my husband. I despise feeling useless. It hurts so much that there are so many of these times. I feel like so much time is being stolen from me.
So I stop myself. And I try to convince myself that time isn't being stolen. Because it hurts too much to think that it is; that I'm 27 years old and I spend quite a few days like this. I convince myself that I will not let damn bacteria take time away from me. There may be times that I am unwell, sure. But I will not be useless during that time. I will use that time.
So I ask myself, "what am I supposed to take away from this time? What is it that I'm supposed to learn?" I think I'll never stop figuring that out, and I think that when I am well again and I look back at this time in hindsight, it'll be clearer. But I feel like the tears that I shed during the times I feel useless tell me a lot about what I need to learn and how I'm supposed to use this time...
When I stop and think about it, for years I have been terrified of illness. One of my biggest obsessions with my Obsessive Compulsive Disorder has been over illness (obsessing about it and trying to prevent it through compulsions). How ironic that all this time I was carrying a stealthy disease.
I continually ask myself why this (Lyme) is happening to me. The other day I was at the gym with Ty, trying to get in a short workout even though I didn't feel well, and I literally started cursing Lyme out loud with every step I took. First I started feeling angry because I was feeling weak and exhausted and thought "why??" And that anger turned into "how do you like all this oxygen in my blood, huh? Oh, you don't like that? You don't like seeing me build strength? Well screw you!" Tyler laughed and then we both laughed and there's a possibility that those words are a toned down version of what actually happened. And it made me feel good to talk to the blasted bacteria and tell them that I. Will. Win.
I've always been a strong "everything happens for a reason" believer, but with Lyme I keep finding that I'm falling short (which doesn't make me much of a believer, apparently). I only fall short sometimes, I suppose. When I'm feeling well, it's much easier to feel hopeful and to look toward the future with optimism and hope and think "yes, I will be well again!" When I'm not feeling well, I find that I'm trapped in a hole, wondering how I got there and how I'm supposed to get out, thinking "how much longer am I going to feel like this?" I think it's the uncertainty of treatment and remission that drives me over the edge. There are no answers with Lyme. I'm a control freak, and I just want to know!! I want to know what kinds of treatment I will continue to endure, how long it will take, how much money it will cost, how Lyme will impact the children we have, if I can get this in to remission and keep it that way... I just want to know.
As the saying goes, "the ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." These words haunt me lately. I feel I am failing as a human when I am angry at Lyme. What does it say about me, that I have such feelings of anger and hopelessness about this disease sometimes? I feel like a hypocrite. I can tell other people that everything happens for a reason, but I am having a very hard time seeing the reasoning for this illness. What a crock.
But if I look deeply at the kind of person that I am, from every angle, it kind of makes sense again. My flaws are that I worry. That I obsess. That I feel the need to have complete control. That I trust no one anymore. That my faith can be shaken when everything comes crumbling down. That I am so preoccupied with worrying about what will be, that I am not enjoying what is.
My strengths are my compassion. My understanding. My desire to reach out to others. Writing how I feel through music. Recognizing other peoples' pain and finding a way to try to relieve it. Loving others to a fault.
Both of those lists have been the way that I have been for as long as I can remember. And it all starts to make sense to me. The things that can bring me down are my weaknesses, and my strengths are my tools that I have been given to overcome them (seems obvious, right?). I have every intention of working on my weaknesses so that whether this is the only life we live or not, I live it better. "Better" means letting go of expectations, worries, flaws... Living with what is and being in the moment. That doesn't mean that thinking about, preparing for, and looking forward to the future are bad things. That means that for me, I can't obsess about what the future might hold. I have to focus on right now, on getting better, on continuing to be a loving person through hardships. We all have hardships. Life is about helping to make someone else's hard times a little more bearable, no matter what you believe is the reason for those hard times.
So why me? Because I have something to learn through this (I say "through this" and not "from this," because I think it will be a continual journey). And perhaps I have something to teach through this.
If there are things that I'm learning, it's that on the other side of hell there is hope.
It's that I am stronger than I think I am.
It's that I'm seeing a side of my husband that I've never seen before- a new kind of understanding, compassion, and caretaking (Good Lord, I love you so much).
It's that I can get so fired up about something that I'll do anything to fight for it. Who are we if we sit idly and let the things that hurt us continue to hurt others?
It's that I cannot live in fear. Above all, I cannot live in fear. I'm truly starting to feel the karmic circle here for me with Lyme. Isn't it ironic that my whole life I have lived in fear of illness? Most of my Obsessive-Compulsive-Disorder is centered around fear of and the warding off of illness. Is that not ironic??
I guess I feel like I'm getting somewhere; if not actually improved health, at least an improved understanding of my spiritual role in it?? I do think that overall my health is improving, though.
It's time to listen to the messages that life sends us. Listen to the people that are strategically placed into our lives, listen to the happenings that take place. Call me kooky, but I think that otherwise, it is all in vain.
Update:
Things have continued to be up and down, and up and down since the last time I wrote. I had an appointment on May 4th, which I was anxious about, as I had had an Echocardiogram (ultrasound of the heart) a couple weeks prior and knew I would be getting the results. Turns out, that was a two second conversation consisting of "your echocardiogram was normal..." Hallelujah! This rules out structural abnormalities of the heart. The hospital failed to do the correct EKG that day, which possibly turned out to be a blessing in disguise. My doctor had ordered a 30 minute EKG that was supposed to be done that day as well, which is pointless if I'm not having symptoms in those 30 minutes (and I likely wouldn't have). She decided it would be more effective for me to have a holter monitor and wear it for two days anyway. I got it attached yesterday and have it removed tomorrow. I had some palpitations and pounding of the heart during activities where your heart shouldn't be pounding, or at rest, so I'm hoping it's picking up some "good" stuff. The goal is to determine if the symptoms I'm having are from something benign or harmful. Prayers for something benign, please.
Feeling Wired
She really wants me to see the cardiologist for a consultation, so that's in the works.
I went in to have my first IV hydration on the 6th (infused with vitamins), in hopes that it would make me feel remarkably better. I did seem to have a great weekend, but it was unclear to me as to whether it may have been the hydration helping, or whether it was the natural cycle of the bacteria doing it's thing. When I woke up that morning before I went in, I had already thought "well this is going to be a better day..." So I'm not sure. I may try it again in the middle of the next herx or something.
I've still been having muscle cramps every so often, that usually strike me at night or in the middle of the night. A few weeks ago they were absolutely horrible... Writhing, screaming, tears... Tyler was starting to get used to it and talked me through it saying "you know this is just the Lyme. You know this will be over in a few minutes... It will end." It was comforting to hear those reminders. This week, I was startled from sleep at 3:30am three separate times due to unbelievable muscle cramps, and I had a fourth one this morning when I was taking Kea out. These times, they didn't bring me to tears for once- so that's an improvement!
I'll keep you posted on the results of the holter monitor (two day EKG monitor) that I'm wearing as I get them at the beginning of June.
Thank you for taking the time to read <3
