Explaining to the lay person what chronic Lyme feels like

I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in excruciating joint pain, migraines, and constant nausea. On top of that your cognition is effected: you have lost your short term memory and your working memory is hampered (you can no longer manage complex reasoning and are unable to find the word your are looking for). You may or may not be able to read and write. Any allergic reaction sends you into a tail spin (because it makes sense that an immune response would trigger an autoimmune reaction) so you live in constant fear of mold/hay fever/etc. You may or may not suffer from chronic insomnia or you might sleep 23 hours a day (and don’t you dare say that you would love to sleep 23 hours a day!! That is arguably the cruelest thing you could say to someone with a chronic condition). Your life is stolen from you while you are in the prime of your life, leaving you broken and despondent. Many sink into deep depression. Your friends and family abandon you because you are no longer “fun to be around.” There are many other symptoms to add in but this gives you an idea…

Now multiply this by years.

Now you may have an inkling of an idea of what we go through and why we get upset when you say, “oh yeah. I get tired too.”

I hope this helps give a better picture of what it feels like to be trapped in the body of someone with Chronic Lyme. Was this helpful? Did I leave anything out? Tell me in the comments below.

Inspiration through Music

I’m seeing lots of posts of Lymies and Spoonies struggling. I too am in a lot of pain and am struggling with both addressing the pain and expressing it. A friend posted a status yesterday and I could tell she was getting to the end of her rope. For me, when I get to those moments of extreme trial and tribulation, I use little “tricks” to help me make it through… one more day, one more minute, one more breath. One of my favorite “tricks” is to sing this song to myself.

What songs inspire you? Share links in the comments!

“We are going, heaven knows where we are going,
We’ll know we’re there.
We will get there, heaven knows how we will get there,
We know we will.

It will be hard we know
And the road will be muddy and rough,
But we’ll get there, heaven knows how we will get there,
We know we will.

We are going, heaven knows where we are going,
We’ll know we’re there.”

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I miss the woman I used to be

It’s been quite a while since I’ve posted. I had a torturous sinus migraine for five days last week. As soon as I recovered, I had to play catch up on life. I have a hard time figuring out how to prioritize. Which comes first? School? Blogging? HOA Board of Directors work? Life? Me? I just move them around like a game of Three Card Monte never sure of what goes where. In the meantime, here is a blog post I wrote a few years ago. I hope it will suffice in the meantime.

I miss the woman I used to be. <– click here to read my old post.

Fear and Backsliding

I’m feeling fear about backsliding. I’ve lost muscle mass that I worked so hard to build up. I know that it is a process. I’m wondering: am I alone here? Please leave comments about your experience. Thanks!

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