iStock_000013011972_LargeIt’s a beautiful day — stunning actually — but I’ve been lying in bed since one in the afternoon. I’s now almost six and I’ve wasted yet another day thanks to Lyme disease.

In the last week, my joint pain has been getting worse and worse. Today, it feels like I’ve been hit by a truck. Every muscle hurts to touch. My hair started falling out in the shower. Most joints in my body are extremely painful. It hurts to open my hands or bend my elbows. It hurts to stand up because my right forefoot screams out in agony. My right knee, both hips and my neck are joining in on the fun. I have a horrible headache, but none of these pains are the worst of it.

I feel like the life has been literally sucked right out of me. The fatigue is overwhelming. I’m so tired that my eyelids struggle staying open — like they do when you’re listening to a boring afternoon lecture in a dark room. As tired as I am, the bitch of it is that during these cycles, I am awake during the night. I lay there tossing and turning, tossing and turning, trying not to wake my husband. I have grown to fear getting up to go to the bathroom because the walk (or should I say shuffle) to the bathroom is so painful. It’s not a pretty sight.

There’s also another side of Lyme people don’t often talk about — the anxiety, fear and depression that hangs a dark cloud right over your head. This doesn’t happen because you feel sorry for yourself — it happens because the bacteria gets into your brain. Lyme disease is a spiral-shaped bacteria called a spriochete that looks like a cork screw. If you remember reading about people who went “crazy” and some who killed themselves when Syphilis (another spirochete) went undiagnosed, it was because these suckers drilled right their brains. Simply put, brains don’t like inflammation OR sprirochetes.

But this is my new “norm” so I deal with it. This is what Lyme disease feels like.

We “Lymies,” which is what we call ourselves, don’t like to share the truth with our friends because it makes us look weak. It’s not a disease people understand so we end up feeling alone and scared. We paint fake smiles on our faces when we see you and tell you that we feel fine. We add smiley faces and exclamation marks to text message so we “sound” good.
We pretend like nothing is wrong… except you can’t hide from your partner. Sadly, he or she sees the truth about the torture this disease brings.

The hardest part about Lyme disease is that it constantly teases you. You feel better for a while and you think you’ve finally won the good fight. You do what you’re supposed to do: You eat well, you takes your meds and supplements, you exercise. You do everything your doctor tells you to do, yet it still comes back. And when it comes back, it comes back with a vengeance. You feel like the underdog boxer who is beating the heavyweight champion in the 11th round. It’s so exciting to be winning until the champ knocks you out in the 12th.

Lyme disease has a cycle. I think it’s different for everyone. I once went two full months when I felt really, really good. To feel “normal” again was simply amazing and I was so incredibly grateful. But I am mostly living a four- to five-week cycle of hell. The joint pain never goes away, but the intensity skyrockets during these periods. I don’t know if it’s the Lyme disease or one of the co-infections (Bartonella, Babesia, Ehrlichia, or Anaplasmosis) I got from the bite of a tiny tick that is causing my problems. All I know is that it sucks.

So I’ll do what I need to do to get through this. Hopefully, this terrible spell will only last a couple of days. I will lay low, sleep as much as I can and wait. Wait for the pain and fatigue to get better and, more importantly, wait for a cure.

 

Previously Published in The Huffington Post