Bloody Lymey

A Blog About Living with Lyme Disease

The Lyme Spouse Protocol ……..

I happened upon a site that is for “spouses” of Lyme patients. It is something of a misnomer, however, since the contents seem applicable to parents, siblings, roommates, adult children, friends, coworkers, bosses – the “anybody” – of a Lyme patient.

I currently work with people with disabilities and sometimes I think of Lyme Disease in a new light – particularly when someone is clucking their tongue, shaking their head, and furrowing their eyebrows into that sympathy arch. I think about how some years ago, I would not have had the compassion that I have today. Don’t get me wrong. I felt BAD for people with limitations/medical issues/chronic illnesses …. but I didn’t “get it.” Had someone mentioned fatigue, I might have thought “well? Why don’t you get up and move around? That’ll help.” If there was a pain issue, I might think “well? Doesn’t a hot bath and some Ibuprofen help?” Honestly. I did NOT have a clue. And many people just DON’T.

There was a gathering in Boston to promote awareness. Looking at pictures, I saw a woman holding a sign that says “You don’t get Lyme until it gets YOU.” How very true. Oh, how true.

This site explains what it feels like, the breakdown of the symptoms. It addresses the EFFECTS of the symptoms on us – emotional, physical & medical. Because let’s face it: chronic illness is a mind f**k!!! And I never got that. I had no idea the strange goings-on upstairs [tapping my temple] until I had this for a while. And it seems like the longer I have it, the more twisted my thinking becomes. It’s like living with an abuser that you can never EVER get a restraining order against, you can never move out, you can never move on. There’s no one here telling me I was “begging for it,” but that seems to be the one exception. Oh, and the name-calling.

But it does parallel the “spouse” experience with that of the patient. Something like a “hostage” living with an alcoholic (in AA sometimes people say “I took a hostage” instead of “I got married.”) It speaks to the guilt and anger. They sometimes carry the weight of the household on their shoulders and sometimes when I’m hibernating on the couch, through the fog, through the haze, my thanks is a quick mutter. There’s a million things that they go through and when we Lymeys feel sick, we aren’t able to support them the way they should be.

They have a link at the bottom to “contribute,” which makes me cringe (why not contribute to a scientist or doctor who is making advances toward a cure – and where are they? – so that the lyme spouses will simply be SPOUSES?)

Here is the site if it helps:

Uhhh……….. the link setup on this site is not working. Copy and paste this: http://www.lymespouse.org/lymespouse-protocol Sorry about that! 🙂

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