Killing Me Softly

Lyme Disease is often called an invisible illness.  For me, its the silent killer.  A person with this disease will only allow you to see what they want you to see.  I did this until it was absolutely impossible for me to do anymore.  I would lie about how bad I actually felt because I didn’t want to worry them.  I would get asked all the time how I was feeling and I sounded like a broken record, so I just started lying.

I have been so fortunate to get this amazing treatment by Dr. Jemsek.  I have come SO far and will continue to recover.  Lately I have been experiencing some symptoms again.  Before, I actually thought I would die abruptly from a seizure or my heart giving out because my resting heart rate was 155.  Now I am left with constant reminders of this disease with pain and various restrictions.  I feel like it is killing me softly at this point. (Yes. I love the Fugees. lol)  That’s the thing with this disease.  There is no cure.  There is only remission.  As soon as I started seeing the all too familiar signs I was angry.  I have not left that angry phase yet.  I am so angry that this will be my new normal.  I was very optimistic on how I would feel after treatment.  I wasn’t expecting to be in this much pain and still be this restricted on tons of things.

About a year ago someone sent me and article explaining the ‘spoon theory’.  Let me explain.  Say you have 10 spoons to get you through the entire day.  Every time you do something, you use a spoon.  You wake up and walk to the bathroom…..that’s one spoon.  You take a shower…..that’s THREE spoons.  You walk to your car…….that’s one spoon.  You park and walk into work…..two more spoons.  You have now used up 7 of your 10 spoons for the day and you haven’t even started work yet.  If you know someone dealing with an ‘invisible illness’ and see them out….please don’t make assumptions.  Just know that those are the days they are fighting the hardest.  Before I was diagnosed with Lyme, I didn’t know much about invisible illnesses.  Now I know.  I will do my best to educate others as best I can through this blog and my book.  I am determined to spread as much awareness as I possibly can for Lyme Disease.  Let’s all be more kind to each other and less judgmental of others.

I will be returning to see Dr. Jemsek in October and will know more on my treatment plan after that.  I keep reminding myself that I have come so far and  I am leaps and bounds past where I was.  My body is still fighting and healing and I am so thankful for that.  Even the most positive people are not positive all the time.  That’s real talk.  I’m learning that sometimes its okay to just not be okay.  So, today I am angry.

To all my fellow spoonies/Lymies……..There is no rule book for this disease.  Celebrate each victory no matter how big or small.  They are all milestones.  It’s okay to not be okay.  We will all have a new normal at some point in our journeys.  None of us are the same as we were before.  We are stronger now.  May be not physically yet, but mentally for sure.  We will all continue to kick ass and make Lyme our bitch. -Lindsey


10 thoughts on “Killing Me Softly

  1. Anger is an emotion that can carry you when your spoons are few. Use it if you need it! I think that anger is a part of fighting back – and that is what you are doing. More spoons are coming!
    Marissa and I speak “spoon-ese” often. It has helped me to understand without her having to explain and explain the level of her pain. So much of her life I didn’t understand the daily, weekly or even hourly changes her Lupus made to her body. I couldn’t judge how much help she might or might not need on a given day. Speaking spoons is a language that works for us and obviously – for you too!
    Much love!

    Liked by 1 person

  2. Today I see u as a strong ,courageous ,honest,warrior. I have watched you grow leaps and bounds. Keep holding your head high and shoulders back . You make me proud to be your friend.
    Keep fighting the good fight.

    Liked by 1 person

  3. When you get tired of slapping that smile on your face and telling people you’re fine, and you need to let the ugly out, do it! It was the hardest thing that I had to learn. Here’s hoping your many-spooned days outnumber the rest!

    Liked by 1 person

  4. Hi, I saw your segment on thv11 and had to find you! I have had a couple of close friends in my life struggle through this Lyme disease/Rocky Mtn Tick fever process also. One of them was my best friend’s dad when I was growing up (this was in the mid 80’s), he worked for AT&T & went on a business trip to Dallas, he was VERY sick on the flight down there & 3 days later he was gone, very tragic! Now, he may have been misdiagnosis too, but they said he did have rocky mtn tick fever, but who knows – I don’t think they really knew back then either. The 2nd friend was my real estate agent & she had been told she had Lyme disease in 2007ish. She spent SO much money on testing and nothing worked that they prescribed her, so she decided to do her own thing (not for sure what that was), but she prevailed…Anyways, have you seen that documentary called “Under Our Skin”, look it up…it tells how the medical system is broken for this disease. Take care and be well! Cheney, Little Rock

    Liked by 1 person

    1. Lyme disease seems to be everywhere! Everyone know somebody that has it. Yes! It was one of the first things I watched after I was diagnosed. That documentary was so good!!!! Thank you for taking the time to read my blog!💚💚💚💚💚💚💚💚


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s