My Life with Multiple Chronic Illnesses, Including Lyme Disease

Monday, January 17, 2011

Go Directly to Jail, Do Not Pass "Go"

It's so hard to explain this to people who are not chronically ill...but it's just like being in prison.  I can't go out, I have Lyme and lupus and twenty other diagnoses, and I'm extremely the point where I break out in a horrible rash if I'm in the sun for more than a few minutes.  I get severely nauseated, sometimes even end up in the ER with chest pains after sun exposure.  I have to wear dark glasses, even indoors.   

Besides, my driver's license is suspended for medical reasons (vertigo, narcoleptic episodes, etc.).  I'm working with my neurologist on getting it back, and I'm hoping that I will get it back very soon, but at the moment I can't go anywhere unless someone takes me there.  That "someone" is usually my husband, but lately he's been sick and in a lot of pain.  We found out recently that he has Lyme too, probably caught it from me.  He doesn't feel like going anywhere, so even if I wanted to go somewhere (which doesn't happen very often), I can't because he won't take me.

I only get out of the house to go to doctor's appointments.

But it's worse than that,'s not just that I don't leave the house, I spend most of my time in one room with the blinds closed and the lights dimmed, with my laptop as my only link to the outside world.

Because most of the time I don't feel well enough to leave my bedroom.  My feet hurt and burn because of the erythromyalgia, so it's very difficult to walk.  I hurt all over anyway because of Lyme and RA and fibromyalgia and God-knows-what-else.

I make it to the kitchen sometimes to cook dinner.  Occasionally I bake something.   That's about it.

I suppose this is coming up now because I will not be able to work much longer.  I still work part-time over the Internet for my employer, even though I've been too sick to go in to the office since early April 2010.  But while I've been sick for quite some time, as long as I knew that I could still do my job, I felt as though I might have a future.  

Now the future seems curiously empty, as if I have been traveling in a ship over a Flat-Earth ocean and suddenly I reach the end of the world where the ocean spills off into the abyss.  The emptiness ahead is terrifying.  

I feel so alone, which is silly because there are plenty of people in this world who are going through similar phases in their lives, who are losing their careers because of illness.  But that doesn't help me feel any less alone.

Sorry for the negative tone of this post, but today I needed to talk about where I'm at and what I'm going through and how Lyme (and lupus, and RA, and autoimmune hepatitis, and Babesiosis, and Bartonella, and HME, and celiac disease, and etc.....) is/are affecting me TODAY.

I will post something more helpful next time, no doubt.


  1. Hang in there! The sad but true thing about Lyme -- or at least my opinion -- it reaches a point where the only place left to go is up. Of course at that point you've also reached the moment where you make choices of whether to give up and let the disease win or push forward and fight. Lyme alone can cause such severe depression that you have to remind yourself that it's the Lyme talking, not you. It's the Lyme telling you to give up and go Thelma & Louise. The real you wants to keep fighting. It's the devil on one shoulder versus the angel on the other shoulder, and when you are having these kinds of days that little devil is screaming so loud he drowns out the angel's whispers. Ignore that little devil and hang in there. Do what you can do and forget about what you can't do. Most of all remember that as long as what you know to be true and what God knows to be true are in alignment, anything anyone else says doesn't matter. You know the truth of what you are going through and so does God. =)

  2. Thanks's true that Lyme causes emotional ups and downs even without the natural depression caused by the loss of jobs, mobility, friends, etc. I appreciate the encouraging words!

  3. Your post is not depressing at all. I appreciate not candy coating your situation. The depression or really any form of depression is from nutrient and inflammatory damage to the central nervous system. Just like a inflamed knee hurts when you move it a low grade inflamed brain function is altered. It then snowballs in a domino effect.

    It reduces your ability to cope with everyday problems. Hearing stories of other peoples misfortune will have little effect. Right now only a few ways to fight it.
    1. Suppression of the infection via antibiotics
    2. Improvement of immune system
    3. Antivirals
    4. Oxygen therapy (?)
    5. Avoidance of allergens if you are atopic. This seems to be able to trigger viral and or bacteria replication.
    6. Most of the others are just treating symptoms that were created from the inflammatory damage.

    Something needs to be done with this disease. The caretakers, the doctors have been hoodwinked or scared out of helping. I really do not have any appreciation for a physician that would change his/her medical recommendations based on fear/ignorance.