#LYMEISHELL, Anxiety, Chronic Pain Sucks!, Depression, Herxheimer Reaction, Lyme Disease, Lyme Disease Awareness, Lyme Warrior, Migraine and Headache

May is Lyme Disease Awareness Month Blog Post #21: What is it like to live with Lyme Disease?

It’s really difficult to live with a chronic illness especially when it’s invisible.  People look at me and think I’m fine and people talk to me on the phone and think I sound fine.  But so many people including medical professionals think people with a chronic illness or chronic pain are faking it.  In fact, when medical tests all come back negative the doctors will suggest a psychiatrist.  It’s maddening!  When the medical community fails in figuring out what is wrong they think it can’t be real.  It’s a common occurrence among Lyme patients.  Read about Lauren here.  

But when you live with a chronic illness you do not fake being sick!


I'm fine

Yes, I fake it!

I fake being well so it makes it more comfortable for others.  Most people can not handle talking about someone’s illness.  Most people ask how you are but really don’t want the truth.  It’s just the way it is.  The hard part is it takes a lot of energy to fake being well so after 20 years I just don’t do it anymore.  After 20 years I finally started telling people the truth when they ask how I am doing.  Not good!  There you go.  That’s the truth!

So what is it like to live with Lyme Disease?


There is no other way to describe it.  #LYMEISHELL

I will try to explain but you will not get it unless you get it.  


I don’t wish Lyme on anyone but I do wish that everyone could live in my shoes for a month.  Not a day!  A month!  If everyone did that there would be a lot more compassionate people in this world.  Healthy people take their health for granted.  So I’ll try to explain what it is like to live with Lyme Disease.

Just Words

Exhausting, Debilitating, Disabling, Painful, Draining, Maddening, Lonely, Uncomfortable, Depressing, Sad, Anxious, Nauseating, Loopy, Cranky, Anger, Itching, Stabbing, Shooting, Tingling, Numbing, Dizzy, Lightheaded, Excruciating, Horrific, Confused,  Tired,  Overwhelmed, Tearful, Guilty, Desperate, Useless, Insufficient, Bothersome, Burden, Hopeless

What does it feel like on a typical day?

Most days you feel like you will die.  Most days you can not function enough to get out of bed.  Most days you want to give up.  Most days you think there is not point in going on. 

I wake up in the morning and instantly I feel aches, pain (usually burning but sometimes electricity), nausea and fatigue.  I have maybe 1/4 of a second from when my eyes open to when I feel the symptoms.  It’s crushing!  I wish I could be asleep because it’s the only time I do not have any symptoms.  I’m frustrated that another day of my life I am sick.  I access my level of pain and decide if I need a pain pill and I’m happy when I feel I can go without.  I then remember I need to start all the treatments.  I stand up from my bed on a good day without dizziness.  I think about what I have on my schedule for the day and hope I can make it.  Most days it’s just Naturopathic doctor appointments or other treatments I get to help me heal.  I evaluate whether I have enough energy for a shower after my morning treatments but I’m thankful that I have shower chair when I do.  I’m jealous when I hear neighbors driving off to work and wonder if I will be able to drive today.  It always depends on how dizzy or lightheaded I am.  

On a good day I can drive myself to my Naturopathic Doctor for my infusions but that doesn’t happen often.  I get anxious on the infusion days because I know I will be sicker after.  But I don’t know when the sickness will start.  Such a wonderful surprise.  Will it be just today or will it ruin my entire weekend.?  I try to eat before going to the doctor but sometimes I run out of time which isn’t good because the treatments at home and at the doctor can make me shaky and depleted.  I need to replenish my body with electrolytes.  On a good day I can drive myself home from the doctor but that hasn’t always happened.

I get home from the doctor and I’m extremely fatigued and sometimes in pain.  I continue my by pills, drops and detoxing treatments.  I try and eat and rest because my full-time job right now is just to getting better. I don’t have the luxury of having a job.  I can’t just wake up, take a shower, get dressed, eat breakfast, drive to work, work 8 hours, run errands, drive home, eat dinner and sleep.  I just can’t!  I wish I could.  I am jealous of everyone that has a normal life.  


I don’t share videos or pictures of me in the throws of LYME HELL.  It’s too horrific.  But this young women did and I can say I look just like her.  Article on The Mighty by Erin Migdol

I have previously shared videos of others on how horrific that pain is and you can see them here and yes I can say my #LYMEHELL is just like hers.  But it’s not just the pain.  It’s the type of pain.  It’s the tremors.  It’s the feeling that you are dying.  It’s the weird symptoms that just suddenly appear that drive you nuts too.  

  • When you are resting and you suddenly become drenched with sweat
  • When the pain is so severe that is causes tremors in your body
  • When you are watching TV and you are instantly really warm and it’s not a hot flash
  • When you are feeling like you had a good day and suddenly you are doubled over with severe abdominal pain
  • When you get up to go to the bathroom and are completely out of breath
  • When you all of a sudden you feel you are not getting enough oxygen and panic
  • When you are finally able to sit and eat only to have shooting electricity pain in your feet
  • When you think you are walking straight and bump into a wall
  • When you are sitting comfortably and all of a sudden it feels like someone is ripping out your shoulder off

And the list goes on and on.  It’s the combination of everything.  It’s mentally draining!

I can not plan anything!  I try and constantly end up cancelling plans.  My symptoms change hourly.  My illness changes hourly.  My pain changes hourly.  I don’t have a good day ever!  I have some days that are better than others and I have days when a couple of hours in a day are good.  And when I say good I mean not as bad as usual.  

Medical professionals use a pain scale of 1-10 to access a patients pain.  Here is an example of one I like.

pain scale silly.png

I probably had over 200 level 10, crying days in 2016.  And probably most every day in January and February of 2017.  Then I left for Germany on February 26.  So when I say I am better it means I am between 4 and 6.  It does not mean I have zero symptoms.  I always have symptoms.  I hope that will not always be the case but right now it is.  Since I have been back from Germany my level 10 crying days have been a lot less.   I have had more days between 3 and 8.   But every day changes.  Every hour of every day is different.  I’m hoping with my continued infusions following the Germany protocol I will have less and less level 10 crying days and more between 1 and 3!

1 thought on “May is Lyme Disease Awareness Month Blog Post #21: What is it like to live with Lyme Disease?”

  1. Hi Kim, Your day sounds horrible. I am so sorry you have to go through all this. Glad to hear the treatments from Germany are bringing your pain levels down.. Wishing and praying for a full recovery.

    You are amazing on how you get up and face each day so strongly.

    Hope you are up for dinner on Saturday. Understand if it’s a last minute yes or no about joining us.

    Love Linda

    On Sun, May 21, 2017 at 1:48 AM, A Migraineur’s Life with Lyme Disease wrote:

    > Kim Leonoudakis posted: “It’s really difficult to live with a chronic > illness especially when it’s invisible. People look at me and think I’m > fine and people talk to me on the phone and think I sound fine. But so > many people including medical professionals think people with a c” >


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