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I’ve been telling my mom for months that she should do a guest post here. Months, I tell you! And I had thought that my ahem “hints” had fallen upon deaf ears. I have news: they didn’t! She surprised me last week with this and asked me to share it with you.
First, let me introduce you to Laura Murphy, my mom. She’s been in Lyme treatment herself since last Fall after being chronically ill for over twenty years. And she’s one of my best supporters.
I could write up a mini bio about her myself, but I thought, “What fun! I’ll use her Twitter bio!”.
Here’s what she says about herself: Married 30 years, mother of three, charity thrift store manager, Lyme-fighter, loves to read, write, garden, bike, & cook gluten-free semi-vegetarian yumminess.
Damned if you do and damned if you do
The insidiousness of the Lyme spirochete continually astounds me. As if it’s not hard enough to deal with the daytime struggles, annoyances and outright outrages, they must creep in like the vermin they are and infest my nighttime slumber, my peaceful port in a storm: my dreams of health and vitality. My vision, at night at least, of myself as a normal, healthy, functioning person. Damn the buggers! It’s “Lyme in Action” in a dream (cue the dream sequence)…
(Now this part is the dream!) For some reason, I had decided to take a class at the U. Psychology, to be exact. So when I got home from work, I threw what I needed in my back pack, jumped on my bike, and pedaled off to school. When I got there, I hung out in some fictional version of a student lounge, with a lot of other, much younger, students, while I waited for class time. Suddenly, I realized that I had finished the semester in Psychology and had neglected to sign up for the next semester! Panic shot through me! My immediate thought was that I had to quickly go sign up and pay for the class before it started. So I looked around for my backpack, but it was nowhere in sight. The other students helped me look around too, but it had disappeared. My first thought was that my wallet and credit cards were in there—more panic! I knew I had to call my husband to tell him to cancel the cards. I tried to find a security guard to report the theft to, but the only person I could find was a young girl who was some sort of a help desk attendant. I told her what happened and asked for a phone to call my husband. She handed me a tiny keychain-like device that appeared to be some ultra high-tech phone that I couldn’t figure out. I asked her for help and she rolled her eyes and sighed, as if old people like me were so helpless. I began to create a scene. After all, I was the victim of a crime, and all I’d like to do is report it and get some help, for Pete’s sake. I shouted, I stamped my feet, I became really angry. There may have been wild gesticulations; a crowd was beginning to gather. Finally an official of some sort with a uniform and a radio came over. Help was at hand! But just as I was explaining about the theft and the lack of assistance and the deplorable state of affairs at the U, I realized with a sinking feeling that my backpack was actually hanging on my shoulder. Gulp. No one had noticed it. Not me, not the students helping me, not the unhelpful help desk person, not the security guard. Good, I thought, with relief….so with my face beginning to turn red, I shouted “Fine, I’ll take care of it myself!” and made a hasty getaway.
Sigh. Stupid things happen to me in real life, and stupid things happen in my dreams…Is there no escaping this wily bug? So the next time you find yourself in an argument with someone in the throes of self-delusion, who insists that she is right and everyone else is WRONG, WRONG, WRONG—stop and think. Be kind. Perhaps she has Lyme disease and even now is wondering how she can possibly extricate herself from this one. Be kind.
At least we can laugh—afterwards. Right?
First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.
I want to talk about the actual storm of the moment.
Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.
I stalled for time. Putting off the inevitable, I guessed.
Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.
I’m not good. But I’ve been so, so much worse.
I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.
These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.
I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.
I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.
I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.
My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.
And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.
I won’t let this disease win. This round isn’t over yet.
I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.
Ask me if I’m ok tomorrow.
I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?
May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.
Yours in peace and healing, molly
Moments of true silence are a treasure to me. I feel like I’ve received a present I had forgotten to ask for. After seven years, I hardly notice the ringing in my ears anymore. It’s not constant. At times it gradually becomes worse enough for me to notice. Time passes. I muddle through. Next thing I know, I suddenly don’t want to bash my head against a wall any longer. It’s quiet. Silent. Calm. Peaceful. It’s wonderful.
I can go months without thinking about it. Then… BAM. It hits me. The world isn’t buzzing. There is no small hum. There are no bells, no rings, no creaks.
Didn’t I say it was wonderful? Sigh.
But it’s the small things that keep us going. I’ve learned not to take the silence that I’m given for granted.
I love to listen to the quiet.
I feel like I could bask in it.
I can hear myself think.
Then reality tumbles in and breaks me out of my reverie. The clock is ticking in the room next to me; the refrigerator is kicking in, ice is dropping; the heater floods on; a cell phone vibrates and the computer begins humming.
My head begins to throb again.
The world is a loud place. On the other hand, so is my head. It’s still a moment to celebrate when one of the two calms down. For now, the moment is lost. I’m waiting for the next one. Waiting, and wishing.