Sunday, October 31, 2010

The Carousel Disease


If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!

Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.

You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!

Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!

Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!

Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.

Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!

And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the ride is over.

23 comments:

  1. welcome to the wonderful world of lyme disease
    my husband and I both have it

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  2. That describes a good part of it.. but just not the same as living it..
    hugs and prayers of healing my lymie sister.
    Tammy <><

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  3. As I sit supported by pillows today and wonder what the heck happened that I am in horrid pain, weak, fogged in, and having difficulty standing up....your post took away the questions and brought me back to what I know~ Lyme Disease IS like a caroueol ride. I need to just ride it out. Thank you for sharing this, I sure needed to hear it today. PJ at Lyme Is Crazy had a shout out about it on her blog and I am so happy she did.

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  4. This is IT!!! BINGO! EUREKA!!! Alyson I landed on your blog today because it was linked to Renee's post on her blog and she was right... you have really described the lyme ride! Up and down we go... one more ride on the merry go round! Clicking to follow your blog now. Thanks for sharing.

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  5. Thanks for the kind words, ladies! And thanks for linking to my blog. :)

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  6. Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!

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  7. Thanks for writing this. It describes the experience perfectly.

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  8. wow..this is so ell written. I am so impressed..although i do not have as many good days as you describe. I guess there was a time that i did but everything else is bang on the nail. I loved the knee pain part. I am going to pass a link to this around if you do not mind...Thank you for taking time to write it.

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  9. Sorry i meant to say well written. I hope that your carousal ride does not become like mine and last days and days and it seems sooner or later that your on the ride more then your off..:(

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  10. I love this post. Thanks for sharing it again!

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  11. This is a wonderful description of Lyme. I have been like this for so long but more on then off. Thanks for sharing!

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  12. Such a great interpretation. Seems I'm on the carousel 95% of the time and only one foot off the other 5%. But I know that my turn will come and I'll get my turn being off. Thanks, I'm totally linking this!

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  13. Oh when I can't walk nobody is here to see it.. I have nobody that helps me. This is making me very very sad..why when I have taken care of my loved ones.. who passed away.. is there noone to help me.. yeah I am having a pity party. Just feel like I wish this was over ! My mind is not in a good place,, should I call someone to come take away my guns? omg

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    Replies
    1. I feel the same way as you do! Its a terrible feeling of being so down on yourself and the pain is unbearable that you start to think of a way out of this mess. I have had lyme for years and so many doctors that I feel like a guinneau pig. I been through it all, now I just have to get the strength to see a Lyme disease doctor and get on IV. This is my chance to finally get better! Good luck to all!!

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  14. Anonymous, if you need help, please don't hesitate to call a doctor or visit http://www.suicidepreventionlifeline.org/

    A dear friend of mine committed suicide. Please reach out for help.

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