Bloody Lymey

A Blog About Living with Lyme Disease

Independence Day ….

on July 4, 2011

This fourth of July weekend was partly wonderful and partly horrible.

In the interest of ending on a positive note, I’ll start with the horrible part.

I felt half dead. I could hardly move. I was in severe pain. Last night, the nerve pain kept jolting me awake. My neck was so stiff and sore that I couldn’t get comfortable. I could get to a point that was “good enough” and I’d start to doze, only to be awakened again.

The human head weighs 10 lbs. on average. Mine felt like it was fifty. Sitting in a moving car compounded this; I felt my head rolling around on my neck like it had a mind of its own.

My legs hurt in countless ways; the nerve pain would make me have muscle spasms and then my calves hurt because I was walking funny because my ankles and knees hurt.

Then there was the sleepiness. I felt just useless. Sometimes I’d find my head bobbing around and I’d jolt awake, sometimes somewhere I didn’t want to be sleeping.

But without this horribleness, I couldn’t have the help I had this weekend.

Ever see Weekend at Bernie’s? There’s a dead guy that gets taken all over the place. I was Bernie. And my boyfriend was …. those guys who took him all over. I spent the night at his house Friday. He got us Chinese. We watched a movie. I stared. I lay on the couch.

He got me in his convertible and took me for a sunny, breezy ride. I got a sunburn. I actually look now like I have some kind of a life. We visited his baby grand-daughter. All I had to do was sit and hold a baby for a while. Then he got me in his convertible and we drove home.

Last night was the worst I’ve felt in years. The pain made my eyes water sometimes. It was maddening. And I was sleepy. I felt sorry for my son, who keeps complaining about my naps. I’ve tried explaining that the naps are what help me …. finish out the day. They help me do the dishes. They help me stay awake and talk to him. They’re necessary.

My honey had us over and made us dinner. He made a fire. There were fireworks in neighboring yards and we watched. He gave my son sparklers. He built a jump for my son’s remote-control car. My son had a good night thanks to him. If it weren’t for him, I’d probably be laying on the couch and my son would be coloring or watching TV.

Today my boyfriend drove us to Connecticut to visit my family. The fatigue wasn’t so severe today, but the leg pain was quite remarkable. The walk from the yard to the bathroom was brutal for someone like me. My legs are shaky now from all the schlepping. But I never could have driven there. Never.

My son got to swim in the lake, play with cousins from Minnesota he’s never met, went for a boat ride …. he had an amazing day thanks to this awesome man in my life.

He also owes many thanks to his dad’s dad who brought him to the parade today (I couldn’t) and to the fireworks tonight (I couldn’t). My son had a rather seamless fourth of July thanks to these caring and wonderful men who love us so much.

I can’t say how thankful I am.

I am learning a lot about accepting help that’s offered to me. My chief complaint about lyme disease is the deterioration of my quality of life. I think it deteriorated terribly for some months because of my pride. I was too bent on being independent. All I could do for myself is get from the couch to the bathroom. Whoop-dee-doo.

I’ll have my independence back someday. I know I will. In the meantime, I have to practice more life skills I’m learning and have to correct some things that are holding me back. I’d never notice and I’d never undertake this project without this pain I’m feeling now. For that, too, I’m thankful.


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