My good days are not your good days — in the life of a Lymie and Chiari warrior

I soak in a hot bath, praying it will lessen my pain….. When I drag myself out, I sit on the side, a death grip on the ledge, trying to breath away the roar in my ears, the threatening darkness. Then, quickly, I stumble to the bed, my vision dimming, my body going numb. Its a race against time. I make it, collapse on the mattress, and immediately the blackness overwhelms me. When I emerge, my head is screaming at me, my body a stabbing mass of pins and needles. My days are long, my nights even longer. The pain is a storm, beating, battering viscously, relentlessly. I dimly watch as life passes by, wanting to let go, be done, and at the same time fighting desperately against that very real possibility. This is my world. This is the life of someone with debilitating illness.

I have Lyme disease, as well as low lying cerebellum tonsils. That means my brain is falling out of my head, spinal fluid is building up on my brain, and my brain stem is being squeezed with every heartbeat. Well, it means a lot more than that, but that’s the uber simplified version. Lyme disease is pretty horrible on its own, but often it comes with a multitude of other body wide infections that join their little friends in doing everything they can to destroy all your vital organs. I have had Lyme for over ten years, and was most likely born with the low lying tonsils. I’m currently undergoing treatment for both conditions.

Now, here’s the thing…..

My good days are like your horrible days.
My good days are when I can finish a sentence without gasping for air. When I can homeschool my kids, do the dishes, and feed my family. My good days are when my headaches have lessoned to the point where I can move without puking or falling over from dizziness. They are still there, burning, stabbing, shooting, aching, blinding…. but they are manageable. On great days, its just a dull roar. When I’m getting slightly more oxygen than my bad days. When I can look up and/or down for a few minutes before the burning in the back of my skull reaches an inferno. On my good days I can walk my kids the 60 seconds it takes to get to the park, and sit there and watch them, hiding from the sun, as it makes me dizzy and increases my headaches. On my good days I might be able to run to the store for a quick shopping trip. On my good days the nausea is only an annoyance, and I get to keep everything down. On my good days I have most of the morning to educate my kids, do dishes, possibly run to the store and feed the chickens. My afternoons and evenings are almost never good. I try to sleep during the kids nap time and then we hang out at the house, playing games on the floor or reading, or with me watching the kids play and act out shows and wrestle while I sit huddled under my electric blanket. We watch too many movies. Our new trampoline is a huge blessing for my energetic kids, and for this exhausted mama! My good days the pain is there, haunting me, but doable.

You might see me at the store, or even at the park, and I look fine. You ask me how I’m doing and I tell you I’m good. So you assume that my good is your good. Its not. What you don’t see is that I’m shaking, my knees trying to give out on me, weakness, lack of oxygen pulling me down. What you don’t know is that my pain level is still what you would label as about a 7. I’m slightly dizzy and off balance. What you don’t know is that that outing, is it for me. It uses up all my energy. I go home and barely make it through the rest of the day.
Going to church with all the movement and lights, the words changing up on the screen is extremely difficult. Its dizzying, blinding painful, and utterly exhausting. I pay dearly for going, and most often I can’t concentrate on the message, nor do I remember anything about it, as my pain, nausea, exhaustion and dizziness steals all my focus. The more I fight it, the worse it is, as that just drains me even more.  But I look fine. I look fine, so you don’t understand, and you judge me, harshly. (I’m sick, not stupid. I have ears.) Same thing for bible study’s.
 Most often play dates and mommy get togethers have to be at my house, and I never know when I will need to suddenly cancel. Very, very understandably, this causes a plague like effect. I am the plague. “Don’t make eye contact, stay away! If you can’t avoid it, be polite, be friendly, but bolt and don’t look back at the earliest opportunity!”  Sorry, but if I don’t find the humor in a situation, my life will be very bleak, indeed.

I don’t say this to shame anyone, I have no person in my mind as I write this, truly. I say this to help educate you. The world of illness is a lonely, hard, road to travel, and if this post can bring awareness to even one person, and that person can make a difference in the life someone who needs it, then I’m so very glad.

So, please don’t expect me to conform to your incorrect assumptions of how I should feel, or act.  If I see you and don’t talk much, its not because I don’t want to or cant be bothered. Its because I barely have the energy to form words. Please don’t take it personally.

I will have good days, even good weeks, (Lord willing) and you will expect me to stay on this course. Don’t. That will not happen. My good days will come to an abrupt end. They are called flares, and they suck. Like a tick…. (ok, that was pretty bad)

On my good days I still cant do everything you can do. No where near. On my good days my focus needs to be on my family. That’s all I can handle, and my family comes first. My limited energy is reserved for them. I cant help with bake sales, babysit, ect….. Not because I don’t want to, but because I can’t. If I give my energy away, who will care for my children? Who will feed them, educate them, kiss their scraps, and brush their hair when my husband is at work? The answer is no one. I’m sorry if you cant understand this. I pray, oh I PRAY this will change, and I can help when help is needed, but that time is not now.

If the only way I contribute to this world, the only way I serve the Lord is by raising three God fearing children who grow to be strong ambassadors for Him, then I will have done well. I will have touched their lives for Good, so they might go out and witness in the lives of others, and so forth and so on. As for me, I feel that that is a good and noble path. I may not be out serving my community in a way you can visibly see, but I am serving the future by raising the next generation to, God willing, be Lights for Him in a dark world!

Please, my heart in writing this is to ask you to stop judging those of us who are sick. To stop being frustrated when your expectations are not met. To stop being afraid of me, and those like me, and our diseases. To stop being afraid of saying something “wrong”. There is no right or wrong thing to say. And that’s ok.

I write this for myself, and all the others out there who need a voice. Who are alone and hurting. Sick, dying, waiting, living but not living. Its impossible to understand if you are not going through it, so I don’t ask you to understand. I ask you to be understanding, in all that entails.

 God bless.

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