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When I Find Myself in 'Lyme Hell'

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Damn it. I’m awake.

I can feel it coming.

It’s as if I know the exact second it starts.

I sense it.

Like when my cat is curled up tightly sleeping and his ear pops up.

What do I do?

My eyes open up and shut quickly, hoping to fall back asleep. I feel it getting worse and it is out of my control. It goes from zero to 60 in 10 seconds. One to 10 on the pain scale. I need to move and help it, but I’m frozen in place hoping, wishing, praying it stops. But it’s happened so many times before, I know I can’t stop it. But I can get up and try to tame it.

Because it’s evil a force within me that I cannot stop or control. It’s now happening six or more times a day. I expect another vicious storm as soon as the current one passes.

I open my eyes and tell myself to move. I lift my feeble body with my weak shaking arms. I try to roll my body to be able to stand easier, but it doesn’t always work. I wish I could knock myself out because that is the only time I am at peace. But I know I can’t. I know I must move to get to the bathroom. But it’s so far. Its maybe 30 steps but it seems almost impossible. I hold on to my furniture as a wave of nausea and lightheadedness washes over me. I take a few steps at a time and hope I don’t fall over.

I’m surprised I didn’t pass out.

I’m surprised I made it to the next piece of furniture. I hold on and lower my head until the dizziness passes and I think I can walk a few more steps. I wish I had a video to prove this is real but I don’t want to replay the horror. I take a few deep breaths and continue. I’ve only hit the door, doorframe and bounced off one wall on the way there.

Success! I made it!

I hold on to the sink to make sure I don’t pass out as the lightheadedness and nausea washes over me again. I grab the plunger on the sink and lift it up so no pills will go down the drain again. I find the bottle and open it up hoping to see a pill already broken in half so I don’t have to do a new one. I don’t have the energy to do break a new one in half. I get the pill but set it on the counter because I am suddenly doubled over in pain. My stomach hurts so bad and I need my Hooty (an owl shaped microwavable heating pad). But I need a half a pill first. So I grab the pill and put it in my mouth and I hope I can get some water in the cup quickly… whew… success. Half of a pill swallowed.

F***, my stomach hurts so bad but so do my fingers and toes and every thing in between.


I tell myself. What is next?

Forget Hooty. Get in the shower – get heat on my body now. One more second and I will be on the floor. But my legs and arms burn, my stomach is so bad, tears just flow naturally. I know I must get heat on me. I must open the shower door, turn on the water, feel that it is burning hot, pull the shower chair close and step in. I know I must do this while I wait for the pain meds to take effect. Please make it sooner than later. I’m praying for the pill to work faster than it normally does. I stand there and I am three steps closer to my chair.


Don’t fall. You don’t want an injury to happen and your husband to find you on the shower floor. The water is on but its cold. I have to wait, but it’s fast. I pull the chair closer and sit. I sigh in relief that I’m sitting, even though I’m not hit with burning hot water yet. I feel the temperature and it’s hot so I can now move myself directly under the water. I hold up my left arm so it can get the heat from the water because it hurts so bad and I can’t stand the pain. The rest of my body is getting the heat. The tears come harder and the sobbing begins. I wonder how my life got like this. I wish everyone knew the truth about this horrific pain I have.

The rage continues.

I begin hating everyone and everything. I hate my life. I hate everything that is alive. I hate because the rage takes over my body and mind. The pain clouds my brain. I can’t think straight. I can’t even breath straight. I hear something and see my cat and dog laying on the bathroom floor. They worry and want to be near me. I need heat on my stomach but I still need to hold my arm up too.

When will the rage end?

When will the pain ease off?

This is what I think.

Will this episode be one hour or two and a half hours.

Will the level of pain drop at all or do I have to wait two and a half hours and then take another half a pill.

I don’t know.

I just pray it eases soon.


I am thankful for my chair since I don’t have a tub in my house right now. I sit and wait for the Lyme hell to pass once again. But I know it will come back like storms do. I suddenly feel electricity shooting in my hand and feet. I don’t remember plugging myself in but the electricity is real. It’s shooting through me and I can’t turn the switch off. The sobbing stops as I catch my breath. I try to just focus on the water on my painful body. I can’t even focus on standing, drying off or walking to bed.

It’s too much to think about. I try and just breath. I suddenly have shooting pain my left knee and remember yesterday it was the other knee and the day before it was one shoulder. The pain in the stomach is still bad but the burning is easing up. I hunch over because it seems it might make the stomach pain less, but it doesn’t.

I’ve sat here long enough but the electricity is still turned on inside me. My hand and feet are not any better. I don’t know how long I’ve been here, but I must go back to bed now. I turn off the water and take a few breaths wondering how I will dry off and walk to bed. I tell myself to focus. One step at a time.

I dry myself off and step out of the shower and my animals scurry away. I put back on my pajamas that I live in and hold on to the door as I try and get back to bed.

I feel like a “Walker.”

My legs drag and I bump into walls. I need to get under my blankets. I hold on to the bench at the end of the bed so I don’t fall over. I plop on to the bed and I slowly lay back and get under the covers. Both animals jump on the bed and curl up near me.

The Lyme hell is not over. The pain is only slightly better but I can’t mover. I’m once again frozen in pain. But a nine is less than a 10 and I know it will be an eight at some point in the future.

Will it be 15 minutes, 30 minute or longer. I don’t know.

Every session is different and I wish I had someone that could heat up Hooty for me right now.

It’s now around 7 p.m. and the Lyme hell isn’t as bad.

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Thinkstock Image By: KatarzynaBialasiewicz

Originally published: June 27, 2017
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