The Struggle to Live With Lyme Disease
If my body could talk, it would have a lot to say. In fact it ‘speaks’ very loudly to me most days. As I sit here this morning, I can hear it loud and clear. “Why must I always pay the piper for everything you do? Did you really believe you were going to get out of bed this morning, really?”
For myself, the less busy and stressed I am, the better the conversation with my body goes. This past week was an extremely busy week for me. I pushed myself way beyond what I should have. Last Thursday was my husband’s and my 26th wedding anniversary. I’m still paying for the gift that I gave myself ( a few days out of the house, no holds barred.) I will probably be paying for this very expensive gift for at least a couple of months or more.
I went to bed last night with a migraine, nausea, extreme fatigue and pain. I awoke this morning to the very same scenario.
My body is screaming at me, and what it has to say is loud and clear. Like a parent to a belligerent child it mutters, “Why don’t you ever listen to me?” Thus begins the litany that goes on all day, most of the night and sometimes even into the wee hours of the early morning.
“Why did you ride in the car for so many hours yesterday? What about the day before, and the day before that? What were you thinking?”
Well, I suppose I thought a few days out of the house would be fun. What harm could it do to ride around in a car? Apparently a LOT!
“Why did you eat that piece of pie? Why did you eat that appetizer? Don’t you know by now that gluten is your arch enemy?”
YES, I DO! But, sometimes it is nice to break the rules and eat something I love. Even if I do pay for it later.
“What were you thinking having a bit of fun shopping for a new dress? What good is it going to do now? You aren’t going to feel like wearing it?”
Because, once in a while it is nice to feel human. To feel pretty and feminine is like sunshine on a cloudy day.
“Didn’t you hear me Thursday, Friday, Saturday, Sunday and Monday when I told you to STOP, to rest? When I flashed all those warning signs?”
Oh, I definitely heard you. I just chose to ignore those warnings. Now, I will be resting for many moons. Trust me I know this!
“Did you really think you are allowed to go out and have a good time?”
Yes, I did. I had a lovely time, regardless of the terrible feeling of sickness hovering around me like a cloud. Warm memories are a wonderful thing when you are sick all the time.
“Why didn’t you pay attention to that nausea creeping up on Friday?”
I thought if I ignored it long enough, it would realize it wasn’t welcome here and leave. NOT! I ignored it because at the time I could!
“Why did you continue to smile and say ‘I’m fine…I’ll be fine,’ when you knew this day would come?”
Because, I get tired of talking about feeling sick, being sick and looking sick. So to paste a smile on for a day or two is a good thing for me. It allows me to feel a little bit normal once in a while.
“You can barely lift your head off the pillow today, do you realize how much rest it will take to pull you out of this flare?”
Yes, I do. If anyone knows this it is me. I have gotten good at being disobedient and counting the cost.
“Your legs feel like lead because you shouldn’t have worn those cute sandals and walked so far! You know you really could use a cane to help you? But, NOOOO….too much pride for that. Well, I’ll show YOU! ”
Yes, I’m sure you will. You always do.
“When your husband asked you if you were ‘all right’ Friday morning why did you nod and say “I’m Okay?” When you knew very well that your weren’t?”
Because every once in a while it is nice to answer him with a yes, rather than a not really. Having to say no all the time is embarrassing.
“When the lady in the store asked the same question with concern on her face, why did you just dumbly nod and say “Oh, yes, I’m fine!”
Again, because it gets embarrassing explaining myself all the time. It’s better for me sometimes just to play make believe. Besides, most people don’t need or want the honest answer. They just expect everything to always “Be fine.”
“When you hobbled out of the store the other day with the birthday gift for your little daughter, your husband said ‘You look haggard. You look like an extremely sick person. I think you need to go home.’ Why did you stagger over to a bench and say I’ll be fine just give me a minute? You should have gone home immediately!”
Because, I was looking forward to spending the day with my husband. I wouldn’t have traded it for a mint of rest.
“Why didn’t you realize, that when your face began to feel numb on Saturday and Sunday that you were herxing from the new medicine you started on Tuesday? Why didn’t you drink more water?”
Because all of this up-keep and maintenance of life with Lyme Disease gets OLD. I was hopeful if I ignored it, it would just GO AWAY!
“Do you really want to go there? Do you really want to end up with Bells Palsy again?”
No. But, I also want the chance to make new memories with my husband and family. Sometimes a set back is worth it. I’ll pay the price.
“You knew utter exhaustion was creeping in from all sides on Thursday. Why didn’t you slow down your pace?”
Because, we were having a good time together and it was our anniversary. I didn’t want to ruin the day for us both.
“You felt the tightness in your chest on Friday. Why didn’t you take a detoxification bath then??”
I was too busy spending time with my husband. Sometimes just like a pouting child, I don’t want to take a bath.
“NO! You had to keep going. You had to ‘look’ normal. Like any other person out for an anniversary celebration.”
“NO! You said ‘I’m okay, I’ll be fine!”
“Well, welcome to your version of ‘FINE.’ Aching muscles, heavy arms, heavy legs, numb feet, numb face, sickening nausea, pounding headache, violent vertigo, throbbing hands and knees, twisting gut, painful chest spasms, fever and exhaustion.”
“Welcome to lying flat on your back for the rest of the day, the week, the month.”
“Welcome to a full fledged flare.”
Fine, I say. I don’t care. I had a lovely anniversary. It was worth the price. I would do it all over again, just to spend one more day with him.
And so it goes…a conversation with my body. Never a word spoken out loud. All in my head. But just as real as if there was another person sitting across from me.
Seriously, you wouldn’t believe the conversations my body has with me. It is like the worst guilt trip EVER!
Just like in Cinderella’s fairy tale, there is always a midnight. When payment comes due. When the clock strikes twelve and everything is as it was before. I just deal with my midnight experience every day. Every once in a while, it is nice to stop the clock so to speak and put on my glass slippers and waltz out the door. Even if I have to pay with an arm and a leg later.
I know this conversation sounds utterly ridiculous! But, I was longing for time away from this constant illness. It was worth it! Even with all the struggle to make it through, it was lovely. Sometimes you just want to live the fairy tale if only for a moment.
There is always tomorrow, or next month or even next year for listening to the voice in my head. The voice that is otherwise known as common sense. Some days are worth the price I have to pay. My wedding anniversary is one of them.