In a Compromised Position

I feel blessed. In the midst of all the horror stories that have become part and parcel of my daily life supporting fellow lyme patients, I'm pretty darn functional.

I do this blog, and am active on facebook lyme forums. I live in an intentional community and I still manage to go to a weekly meeting, do a little committee work and make my women's group meetings. I watered the garden a few days ago when my neighbor who I garden with (who has done 99.9% of it this year) was caught out of town unexpectedly.

But I don't work anymore; the closest I've come in months is managing an occasional interview with someone who comes to me, and a few hours here and there where I don't have to travel, and a little planning for next year's work (hope springs eternal).

My days are defined by the small space of my house--a house I built myself with work exchangers and friends in the last few years before I crashed. I go from bed to couch to bathroom, and only some days make real food for myself and my son. Neighbors come and juice for us once a day or sometimes stop in to talk community, and that's my main social contact.

My sex life is shot, and lyme has done a lot to erode the emotional juice from both friendships and marriage. My best friend, Alyssa, drops by a few times a week, and those visits are precious to me, in part because I'm emotionally oversensitive and Alyssa still loves me. (I'm teared up writing that; it means so much to a chronic illness patient when old friends stay in our lives.)

And I'm not alone. I'm going to quote a couple paragraphs from this paper, to give you a sense of how impactful chronic lyme disease (called CLD in this quote) can be:

There is also evidence that symptoms of CLD can be severe.   The Klempner trials described the quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction”. (Ma'ikwe's note: that's a heart attack in medico-speak.)

Fallon et al. described pain reported by patients with Lyme encephalopathy as being "similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure”.   

We are, in fact, quite sick, though in most cases, you wouldn't know it from look at us: how many of us regularly hear, "You look great!" Isn't that weird... how can we look so healthy and feel so crappy?

So how do we rate ourselves in terms of compromised lives? Here's the data from the survey:

Now, my guess is that both of the extremes in this are probably under-reported. A person without any compromise is unlikely to be particularly focused on lyme, and probably not find or take the time to do this kind of survey. Folks who are really bedridden are unlikely to have the energy to spend 45 minutes doing an online survey. (How the heck did you folks who are bedridden manage this, anyway?)

(By the way, you may note that the total % on this chart adds up to more than 100%; that's because I let people choose more than one answer. I always feel irritated with surveys that don't allow for nuance. So some people, for instance, may have chosen both "noticeably compromised" and "significantly compromised" if they felt their condition was on the border between those two answers.)

Still, we work with what we have, and the survey says that 62% of us report a compromise level of significant to bedridden. This strikes me as being very much in line with the studies I quoted above, where the authors have put the lyme data next to other diseases that people have more familiarity with.

Today's chart can be an excellent resource for those people in your life who talk about how you are faking it, or don't look sick, or don't generally seem to grok that your condition is serious. (By the way, am I dating myself by using the word "grok"--does anyone USE that word anymore? Or just revealing my early science fiction reading roots?)

Hang in there folks! This disease is a crazy, debilitating experience. The only saving grace is that we are all in this together.