Sunday, April 28, 2013

Emotions and the Lyme Patient: Part 2 - The Real Deal

Now that I've written about grief and had a tiny public meltdown I think we're ready ... the scene has been set.

Again, to depersonalize a little I'll have to go into list mode. BTW, depersonalization can be a GOOD thing ... it's the body and mind's way of setting emotions aside for a bit until they're up for the challenge. That being said, I don't think I'd work on becoming an expert in it. (It's encountered a lot in those with PSTD. Wait. Chronically Living might put one in that category. I'm going to need to think about that more.)

Anger: Yeah, this is part of the stages of grief but it's not ONLY dealt with while grieving. Sometimes we're just ANGRY. For those suffering with and/or recovering from Lyme Disease there are actual medical reasons for this. Spirochetes are busy drilling away in our heads and this wrecks havoc on our emotions. I have not experienced "Lyme Rage" but can say I'm a whooooole lot more "snippy" than I used to be. Sure, things bothered me when I was healthy; but I either blew it off, sweat it out on my treadmill, or chewed on it until I could swallow it. Not so much anymore. I've noticed it's harder for me to internalize anger than when I was healthy. While I have NOT punched or cussed anyone out, I've noticed that I have the occasional desire to do so. Sometimes I yell at them in my head or talk it through with someone (most helpful!) Although on a particularly wintery day I came upon a man w/out a disability tag or license plate hovering in a highly coveted disability parking spot while his wife ran into the store. As I trudged through the snow to my own car, I passed him and loudly suggested he "man up." Ok. I've never used that phrase in my life before. Ever. I must have used it because my former students, fourth graders, often did. There was an "exchange." When he sarcastically asked if I was going to call the police I actually whipped out my phone. Whoa. Never done THAT before either. Although I don't remember it, a friend says he was concerned the rather large angry man was going for his car door. I do remember my friend stepped between the car and me. Does this mean I was acting like a ten year old? Well, yes. Yes, it probably does. I'm going to blame the undiagnosed spirochetes for the car incident, but now that I have a diagnosis I'm more aware of my responsibility to keep my cool. Even if I have to count to 1,000,000, or roll my eyes, or just spin on my heel and walk away.

However, there cases of Lyme Rage that involve violence, including domestic violence. My totally off the wall, coming out of nowhere guess on this is that those who have anger issues previous to Lyme are more vulnerable to potential Lyme Rage. JUST A THOUGHT. The good news for Lyme patients is that intense negative emotions, including rage, lessen or are eliminated with treatment.

Anxiety: The Chronically Living can get some pretty bizarro symptoms that WE don't even recognize as symptoms. Some may affect thinking and some produce anxiety all on their own. Those who are anxiety prone are always on guard, wondering when and from what direction the next bell jar will descend. Will the trigger be recognizable? Will they be in public? Will they be embarrassed? The symptoms of anxiety can range from a feeling of unwellness, to a vague sense of impending doom, sweating, trembling, difficulties with breathing, and/or rapid heartbeat. For starters. There are many of the Chronically Living that actually think they're losing their minds, having heart attacks, strokes, and experience symptoms that mimic life threatening conditions. Responsibly they go to the ER where they are pronounced, "fine."

FINE? Not.

Confusion: Two things: confusion and cognitive impairment (I, myself, bear the latter label.) The number one rule among the Chronically Living is to question everything. "Are you sure I'm not crazy?" "What if my diagnosis is wrong?" "What if I AM crazy?" "What if I can't do it?" "I can't even think straight anymore." Even though our brains and emotions may feel like jello we present with a stiff upper lip and a smile on our faces. Not an easy feat. We do it for you, the healthy. Amongst our own we cry, hug, laugh ... and at times get a glimpse that maybe we've been stripped of everything but the joy of being understood by another human being. Even if it's "only" one who Lives Chronically.

Cognitive impairment is a different issue. This leaves us standing in the middle of the room wondering why we're there. No, it's not aging, and not we're not experiencing existential despair. We just can't remember why we're there. Literally. I have left laundry in the washing machine to mold, forgotten I was cooking, or filling the tub, or where I'm going while driving. Fortunately those days appear to be behind me most of the time, and should continue to improve with treatment, but many of the Chronically Living do not regain what they've lost. We feel ashamed of ourselves. Two major areas: spelling and math. I won't tell you how this former math teacher responded when asked to count backwards from 100 by seven's ... but it wasn't pretty.

Envy: Ever single human on the face of the earth deals with envy from time to time. It's not that the Chronically Living want to steal your joy/bliss/whatever ... you define that for yourselves, it's just that we wish WE could be normal, too! Truth. I envy my 85 year old mother who has more energy than I do. I'm envious when I hear people complaining about all the errands they ran on a given day. Or the "spring clean up" yard work. Or that grueling drive back from spring vacation in Florida. Yeah. I'm envious.

Typically the Chronically Living tend to be comparatively chronically poorer. For those of us who prided ourselves in our ability to provide for ourselves this is a Real Hit. Not only can we not afford our medical treatment/s, but we certainly can't afford all the things that would make Chronically Living a lot easier, let alone "fun" things. If I cogitate on this one too much I slide back into grief. I devalue myself which leaves me not liking myself very much.

WHERE ARE YOU, ROBIN WILLIAMS. Please tell me one more time it's not my fault!

Again, part of the stages of grief, but sometimes a very real medical component of chronic illness. How we wish we could just "snap out of it," or get busy with a project. Usually we're too tired to do much of anything let alone having to break down the steps necessary to accomplish a "project." My oldest grandchild was born in January and I still don't have his quilt even DESIGNED. I do now own graph paper and colored pencils though. Baby steps. Baby steps toward Mr. My Baby.

The Chronically Living deal with depression surrounding being "sick" all the time, the inability to function normally - feeling so limited. What to do? What to do? The first line of defense for ANY body, and I do mean that literally, is a healthy diet. Not what's healthy for YOU but what's healthy for an individual patient. But more about diet in another post. For those who are able to exercise it's highly suggested. I'm working my way through a "Yoga in Healthcare" DVD. I'm in process. I'm a Believer so I pray, read when I can, or meditate on the ways G-d has provided for me in the past. I'd like to tell you I stick to a regularly scheduled disciplined spiritual life, but I don't. Not to be irreverent or anything, but I only do so when the spirit moves me. I also try not to obsess/feel guilty when feeling down ... there is nothing innately wrong with being down when Chronically Living. Counseling? Yes, please. Medications? At times medication is highly recommended and absolutely the right step to take. Being on antidepressants is not a character flaw. It's a strength to recognize what one needs.

Discouragement: I'm on Pinterest and have read all the motivational "pins" possible. Sorry, Nike, I just can't do it. Pretty much any of it. I've spent years reading research, tried ever single suggestion, pushed myself, "paced" myself by letting myself rest and NOTHING seems to make much difference. Taking care of myself is a full time job, one that others have told me is selfish (now that's enough to provoke some serious Lyme Rage!) I get most discouraged when I've put hope or expectations in things or people who let me down.

Fear: This is a big issue. Many chronic illnesses are difficult to diagnose and the process can be PAINFULLY slow. (Like decades.) The symptoms are so many, so varied, so weird, and often mimic other serious illnesses. It's hard to imagine one can be this sick and not die. For the Chronically Living there is the fear of always being in pain and unable to handle it. There is the fear of rejection, poverty, and the very real fear that one might die before being diagnosed. Upon becoming so disabled I could barely lift my head, a friend used to regularly drop off cases of water and some canned chicken for me every few weeks. Recently she told my doctor that each time she left she wondered if it would be the last she'd see me alive and/or if she'd be the one to find me dead. To be honest, I used to worry about my youngest son finding me dead ... and what burden THAT would be for him to bear for the rest of his life. But the beat goes on, I'm still here, and on the road to healing.

Loneliness: There are no words for the loneliness felt by the Chronically Living. Even those in marriages/partnerships or at home with family are lonely. Don't get me wrong, in general I LOVE being alone, but loneliness and aloneness are two different beasts. We feel both. Thanks to the wonders of the internet I am "friends" with some amazing people w/whom I share a diagnosis. We support each other, encourage each other, and share educational info. as well as personal tips for improved quality of life. But we are all still very much alone in our own bodies. A friend might be literally screaming in pain from a migraine. What can I REALLY offer? Some encouraging words and an emoticon or two? Yeah, that's pretty much it. It DOES help to know others understand, but the bottom line is that she's in her body and I'm in mine. Now matter how much I want to comfort her, I just can't climb in there with her.

Then there is the loneliness. We. Are. So. Lonely. Frequently we are no longer able to participate in pretty much anything. We have been labelled as "unreliable" due to our illnesses. This breaks our hearts as many of us have spent our lives being the reliable one in given situation. It's difficult to attend social functions and it's only natural that friends fall away. We understand, and rationally it makes sense. We. Are. So. Lonely. What do we have to talk about with others? No hobbies, no relationships, a lot of the Chronically Living are no longer working, marriages and partnerships frequently dissolve. We. Are. So. Lonely. Over time the Chronically Living drift further and further apart from the "real" world. There are days on end without a literal change in scenery. Yes, this is why I'm so crazy about the bucolic views from my windows. Visits from family and friends are exhausting although so very welcomed! I was fortunate to eat brunch with The Lawyer and The School Psychologist yesterday. I felt painfully aware of my perceived decline in social skills. But because I love them, and they me, I am confident we will all look back at this time in my life as a hurdle we crossed together. DARN. Now I'm all teary ... I love them both so much!

Grief: Please refer to a previous blog post on the stages of grieving.

Rejection: The Chronically Living frequently deal with feelings of rejection. Living in a society that values productivity can lead to feelings of worthlessness. Many people define their self worth by their accomplishments. Days that I'm able to get out and do an errand count as a HUGE accomplishment for me. To others it's done w/out a thought except maybe one of imposition. Oh, to be healthy enough not to worry about running out of energy in the middle of a grocery store! Frequently the Chronically Living make easy targets for others. Our own boundaries are weakened, we're lonely and we don't always recognize when we're continually on the giving end of a relationship. We easily become "dumping grounds," supposedly grateful for the contact. Yeah. No thanks. I understand that Chronically Living makes some healthy people feel threatened or afraid. If it could happen to me it could happen to you. And believe me, it could. You can't catch my disease from me any more than you could from the person you sit next to at work, on the train, or stand in line next to at the grocery store. You talk to them ... please don't reject us because of our illnesses.

And, to be fair, sometimes the Chronically Living reject others out of the age old adage of "it's better to leave than be left." I, for one, am guilty of this. I'd rather acknowledge the inevitable and spare myself the grief of being left again. It's an odd dance. Just yesterday I left a Facebook group that is closing soon. Why leave early? So I don't have to hang around and watch the goodbyes. I'd rather leave on my own terms. We don't get to control much ... sometimes "leave group" is as good as it gets.

Shame: It's tough to think that I am proud of my accomplishments, but I am. I've won some hard fought battles. I'm not just a survivor but an overcomer ... a victor in so many areas of life. And yet I feel shame that, for right now, those days are behind me. In the "what did you do" conversations of life, "taking a shower" doesn't really count for much. We're ashamed that we took our healthy days for granted as do pretty much all healthy people. We're ashamed that we complained about our jobs, being "overloaded" with responsibilities for which we now long. We hang our heads In Shame.

Weariness: Sometimes we're just plain old weary. This is more than the than crushing fatigue chronic illness can cause. We are weary to our very bones. We are weary in our spirits. Symptoms don't let up, doctors don't understand, people are unintentionally insensitive. Yeah, we get weary. Really weary.

We live in a society in which one of the first things people ask is "what do you do?" And they mean, "for a living." Stay- at-home-moms and those who have never "had" to work feel guilt and worthless over this one. Yeah. This isn't even close to that, and as a one time stay-at-home mom I know the reality of the differences. Many of the Chronically Living don't have the strength or energy to even accomplish ordinary household chores let alone hold a job. So the whole "what do you do" question can literally be a jaw dropper. One I had to prepare for. My response is now, "I am healing from Lyme Disease" but for a long time I found myself scrambling for appropriate responses. For awhile I did the "I'm retired" only to be asked why I retired so young. Whoops. Time to find a new tactic. What is our worth? We're not the people we used to be and we never will be. This isn't a bad thing long term, but living in the moment can make it challenging. I struggle with feeling "needy" and I DO need help. But I do NOT enjoy feeling needy and unable to do what I used to with one hand tied behind my back. At times I wonder, what do I have to offer others? Really. Why would anyone even want to hang out with me when sometimes even I don't even like hanging out with myself!

I came up with a list I keep by my bed.

* I'm a child of G-d (oh, Desiderata!)
* I'm honest.
* I'm funny.
* I'm a loyal friend.
* A good parent.
* I'm a good PERSON.

And it goes on for quite awhile ... I read it as often as I need to. In fact, the paper got so crinkly I scanned it into my computer/phone for quick access in case of emergency. There are many crisis' of the Chronically Living soul.

There you have it ... A to Z, or at least W. There are many, many more emotions that come and go with a flicker of a memory; a "trigger" of some sort ... a song, a fragrance, a photograph. It's like grief, a veritable Hotel California ... one the Chronically Living can never leave.

Next post? Something POSITIVE. I promise!


  1. Phooey! This is the third time I've tried to post the same comment and I'm getting bored with myself!

    I just wanted to thank you for validating all my hopes/fears/experiences/feelings. I don't talk much to other people about being sick so your words are priceless to me.