Friday, May 15, 2009

The Need To Disengage

May (which is shockingly half over already!) is both lupus and rheumatoid arthritis awareness month, which is a little weird for me since I have both illnesses. I’ve been busy and I haven’t had much time to blog, but overall, I’ve sort of felt the need to distance myself from being forced to think about my illnesses.

I’ve even found myself avoiding my daily onslaught of reading blog updates. Why? I think it’s because this whole illness deal has all become a little too routine. I really have felt like I’ve been dealing with this for years, decades maybe.

Hmm…where do I begin? Let’s see… Parts of my life have become totally cliché and often seem akin to an after school special. How’s that for a one-sentence recap?

Things in my life have been weird lately. I recently started taking anxiety medication because, well, my life was kind of out of control. Everything felt overwhelming and I was in what can only be described as a constant state of “wigging out.” I was constantly on guard, waiting for the next disaster to strike.

I think my more relaxed self has become a bit snarky, maybe even too snarky for some people. But you know, I’m okay with that. Snarky is much better than drab, melancholic, depressed, unhappy, fatalistic – you pick the adjective.

Certainly, I’m not thrilled to have added a new medication to my ever-expanding repertoire. The downside to this latest development is that there are more side effects that I have to worry about and pay attention to. But all in all, I’d say that this was a successful move on my part. And I have a feeling that if you knew me in person before and saw me now, you’d say I seem more “chill” than I did before (at least I hope you would).

More than anything, though, this experience has made me realize that I need a vacation. Then I need to come back and become re-engaged. While I think that an occasional dose of escapism can be helpful, full on escapism can be detrimental. I need to be in control of things that I do have some modicum of control over.

Last year was so completely and utterly consumed by illness because I knew nothing else. I was walking around in pain, sick all the time. In some ways, it’s hard for me to reflect on that time because I’m really not sure how I made it through.

It’s funny when you start writing a blog post and then reality sets you straight. I’ve become adept at knowing that I have a certain window of time for each medication I take that I can flub up and still feel okay. I’m not running to my rheumatologist every time a new symptom crops up. I’m feeling more independent. And while all of this is true, yesterday I was hit by a flare that seemed to come out of nowhere. The nausea that ko-ed me on the couch in the morning didn’t clue me in. The unbearable fatigue that caused me to nap for two and a half hours didn’t either. It wasn’t until I woke up from the nap and my whole body was in pain to realize that I was flaring. And this is a bit frustrating because it makes life difficult – the lack of spontaneity that being chronically ill allows is something that I am still struggling with.

It’s times when I am caught totally unaware by a flare that I am socked back into reality, that I realize I can’t ignore my illnesses. It’s funny because I was never spontaneous before and it didn’t bother me. It’s like one of my favorite songs says, “Don’t it always seem to go/That you don’t know what you got till it’s gone.” But anyway, now that I have things and people in my life, reasons to be spontaneous for, it’s frustrating when I can’t be. And it’s conversations about that, which I dread. Where do I begin? How do I make someone understand that I can’t be up until 3 a.m., no matter how much I want to be? How do I explain that I look healthy, but that a lot of times, my immune system is wigging out? How do I get them to understand the connection between my physical and emotional pain? And how do I explain the disconnect between the two that sometimes occurs?

There are a lot of people in my life as of late who refuse to talk about issues. And at some point, the viability of each of those relationships is going to come into question. And in some ways, I think this is sort of a smaller version of the way my entire life is right now. At some point, I’m going to have to full thrust, grab my life by the balls and look at it for what it is. Just like these relationships are going to have to get unzipped and opened up, or thrown out. I’m going to have to get unzipped and open up to myself.

At some point, I will have to have the internal conversation with myself that goes something like Yo, Leslie. You have lupus and rheumatoid arthritis. Life is doable, but you have to acknowledge lupus and rheumatoid arthritis before they are breathing down your ass and knocking you off your feet.

Quite honestly, this conversation scares the hell out of me, because I know that not only am I going to lose a part of myself with this admission, but by trying to explain my illnesses, I’m going to lose others, as well. And I know I shouldn’t want people in my life who are going to bring me down or refuse to understand, but I’ve acted thus far as if these conversations don’t need to happen; that relationships wouldn’t have to change and that life would be easier by avoiding the subject altogether. Now I know that’s not true…

The question is no longer Do I stay or do I go?, because quite frankly, that’s not an option. It also isn’t whether these illnesses stay or go, because I’ve got them, so now I have to deal with them. The question is whether I live my life with illness at the forefront of my mind and get so bogged down that I can’t think about anything else, or whether I live well with certain constraints and hope that the people I decide to surround myself with attempt to understand and are willing to accept that this is the way my life has to be. Because clearly, avoiding the subject altogether is neither healthy nor productive. In fact, it’s just plain stupid.

I’m not going to lie and say that on the really bad days I won’t disagree with every word I’ve written here, because I probably will. But the first step in getting your shit together is admitting that you don’t have it together at all.

I can’t say right now when these conversations will happen or the form they will take, but I hope that the people they need to happen with can handle them. Sometimes I think we all need to take a step back, disengage and re-energize, in order to get back in, reengage, and face reality head on, no matter how hard reality is to face.


  1. Wow, your post really speaks to where I am right now. I'm newly diagnosed/diagnosing with lupus, and those conversations that you mention? Those are conversations that I've considering, and working up to as well.

  2. Hi Jessica,

    Thanks for your comment. If you ever feel like talking, let me know!


  3. That very likely will happen, thank you! First I need to work on my guest post. ;) Been considering starting a seprate blog to chronicle all this/work through it as well. Will see.

  4. Jessica,

    Anytime, just let me know. I've found the blog to be immensely helpful, although there are some things that only get worked out in "real" life.


  5. Being sick is a part of who you are now. But it doesn't have to define you. I can totally understand that it places some very real limitations on your lifestyle, but on the same notion (and maybe this is just me being naieve) I seem to think that it only limits you as much as you let it. THAT BEING SAID, I am here for you and will listen if you need to talk (even if I don't understand), and would be happy to do whatever it is that you need. Have a good day, and hope your weekend on the rock was wonderful. PS, I think the anti-anxiety meds are a good idea for you.