Monday, March 21, 2011

Anti-Social, But Not Bored

My world has become very small, and I like it that way.

But nobody needs to be concerned about me going off the deep end right now. Really, I'm fine. I've been feeling awful physically due to treatment, but I'm not going to go off the deep end--that is, unless another person tries to tell me what I
should or shouldn't be doing. In that case, I may just turn off my phone and computer and become even more reclusive than I already am :)

It's been a rough last couple of weeks, with my bad moments far outnumbering my good ones. Luckily, I have the luxury of sleeping whenever I choose. (Well, I can't always
fall asleep when I choose, but I can at least lay in bed with my kitties and listen to what's become a non-stop torrent of rain, while attempting to reach a state of unconsciousness.)

I think I'm about six weeks into treatment (although things like counting and keeping track of dates can be a challenge). The side effects just keep getting worse with time. Nobody told me when I started this process, "Each week will get progressively worse until you reach week __ at which point you'll start to feel relief." Well, fill in that blank with at least a number six, and hopefully not much higher of a number, because this is pretty rough right now.

I've attempted very few social outings recently, with good reason. Socializing is incredibly difficult for me right now. Both my brain and body are as weak as ever, but my brain is suffering the majority of the ill effects. With heavy brain fog, new dyslexic tendencies, difficulty speaking aloud, chronic headaches, heightened anxiety, and inability to focus on topics (such as conversation), I wouldn't exactly say I'm in prime shape for social fraternization. So I limit it to texting, short phone calls, and laid back, less frequent outings.

As I've been telling people of these struggles recently, I've raised a few eyebrows: "You write fine, though. We can't tell you're struggling with communication." I don't know how else to explain it than to tell them that writing is an entirely different feat than talking.

For one, I can pause as often as I want when I type. (Imagine me pausing a lot in speech. It's awkward.) Also, when I type the incorrect word, as I often do, the backspace key is available.

Then there's the whole physical act of speech. Anyone who's remotely familiar with speech pathology will tell you that verbalizing a thought is a different physiological act than writing a thought. Since I'm not a speech expert, I can't get into the technical explanation of why typing certain words is far easier than saying them aloud, but there's an absolute physical mechanism that drives the distinction of these varying forces.

We can take the speech issue even further by dividing it between talking on the phone and talking in person. Talking on the phone is easier because I don't have to look someone in the eye or make facial expressions to communicate. Those two things are challenging right now because the parts of my brain that mobilize communication nuances (eyesight, facial expression) are under attack, big-time.

 Normally vivacious, outgoing, and socially unabashed, you can imagine that if I were to face a social task as trying as a job interview while in my current state, I would come across as none of those things. I'd be disconnected, awkward, unavailable and aloof. Yes, it's a really rough week. I hope this passes soon.

 Yesterday I attempted a few hours with my closest girlfriend. Since she knows me better than most of my friends--not to mention is naturally gifted with a talent of keen intuition and sensitivity--she was able to note within minutes that I was far from my normal self. She said I seemed nervous, that I talked differently, and even that I "look[ed] like a different person."

 Yeah. There's a war going on in my body. It's taken over Leila, and Leila is temporarily missing.

 Another friend expressed her concern that, since I'm not employed, I will become depressed. Her implication is that I have too little to do, and this lack of "work" will affect my mood. While I appreciate her clear concern and care, I know she can't begin to understand where I'm coming from. I wish there was a way I could make her understand that I have far more work than I can handle right now, and even though I'm supposed to be destressing, I'm still overwhelmed and stressed more than she could know.

 I can't imagine actually working right now, because my attention span is so short, and I feel random bouts of unpredictable illness that render me dysfunctional. But, I still stay busy in many ways:

Any housewife can tell you there's always laundry to be done, dishes in the sink, floors to be swept, and surfaces to scrub. And any pet owner will tell you there are always hungry mouths to be fed, litter boxes to scoop, pet hair to get off furniture, and messes to be cleaned up. These daily tasks honestly take a lot of my time and energy (but, of course, not all of it).

I've also been dealing with my insurance company, filing claims and paying numerous bills that relate to my Lyme disease tests. As a homeowner without roommates, it seems like I'm always doing something relating to home ownership as well, whether related to the financial aspect or the labor of upkeeps themselves.

On the fun side, I've put countless hours into my back yard, landscaping it and planting new flowers and trees. And I'm still practicing music with my band mates a few times a month. That gets me out of the house and requires me to focus, and singing is therapeutic.

And I've been cooking, which requires grocery shopping, meal planning, and lots of labor and clean-up. Three meals a day, and snacks to eat with my pills so I've never got an empty stomach.

And I still have boxes from my move (last October) that require finding places for the useless crap I've accumulated over the years (half of it is going to charity), but the organizational process is exhausting nonetheless.

And I contacted a cat rescue and had them pick up a stray living in my yard (she went to a great home).

And I'm trying to get out for walks when it's not raining.

And to keep updating my Facebook page (one of the few places where I "socialize" with friends and acquaintances).

And I'm making trips to the post office.

And taxes had to get done.

And at the end of the day, I may or may not lay on the couch and watch a TV show. Or read a book.

And spend hours trying to fall asleep.

So, dear friends, do not worry that I will become depressed out of not working enough. My To-Do list is full and has overflowed onto the back side of the page.

If there's any reason I'd become depressed, it's if this misery drags on for so long that I forget what it's like to feel any semblance of health.

Indeed, I'm keeping my circle of friends smaller these days. I'm a far cry from the social butterfly I was in my early twenties. It's much easier to stay close to the few that understand why I won't be drinking a beer or a glass of wine, or attending parties, or going on trips with them to Tahoe or Vegas, or following up on job leads they're emailing me. I appreciate that all these things come from good places and kind hearts, but none of it is possible right now. Nope, not even a glass of wine.

My house, my cats and my yard make me feel relaxed and safe, and that's all I need right now. I just need to get through this phase.


  1. Mama,

    I really loved this post. It taps into the looking glass that we all need to peer through in order to empathize and truly understand your plight. No one is in your shoes. I would resist the urge to even apologize...your true friends/family know you and to accept you as you are...and that you are doing the best you can at any given moment. Who says 9-5 life wards off depression?...if anything we know that life you recently lead contributed to the decline in your health. Society will always be against the grain of true happiness. Happiness is simple, beautiful moments of expression that are not easily defined. Who says taking deep breaths in the solitude of your home isn't worthwhile? It absolutely is healing and like a mother's embrace to you at this time in your life. Your home is your sanctuary and I applaud that you TAKE CARE OF YOU. Being social is subjective. You do not have to party it up or put on a show. Sometimes...just sitting across from each other drinking tea....or laughing as you slide off a desk chair into a fit on unexplainable laughter is all you need to share with those that "truly get you." I count myself as one of those people....and love you...just as you. with or without will always be my best friend. I love you.


  2. Hey Leila,

    It an all too familiar pattern to me. It's good that you don't mind talking on the phone. I've actually become what I call 'a phoneophobe' since getting sick. Sometimes when my mobile is ringing I just sit there looking at it with a slight panic wondering what to do.

    It actually takes a lot of work to stay in touch with people. It's far easier letting it slip, which is what I and many have let happen. I'm currently trying to make more of an effort to stay in contact with people.

    That's nice that you have a garden to play around with, and that you enjoy.

    I think the sound of rain sounds really nice outside when I'm going to sleep.

    Stay strong girl. Just know when your lying in bed frustrated and feeling ill trying to get to sleep that there is lots of us out there. Me and my partner have had to sleep in separate rooms for the last two years. Not ideal for a young couple. I would actually say that feeling of needing to be alone even counts in the home. I still need A LOT of time alone at home which isn't too healthy for a relationship. Sometimes my partner comes into my room for a chat and I'm just not up for it––I end up feeling guilty, he probably feels a bit unloved... This illness steals so much. I'm currently trying very hard to not let it steal everything.

    I hope you reach that -- time soon : ) xx

  3. Today I searched "anti social with Lyme" and your lovely blog came up. I was very sick this past year and diagnosed with Lyme in July. I am 4 months into treatment and it has been an up and down journey. I have not seen friends or gone out for many months and I seem to like it that way. Last night I was talking to a woman I met in my neighborhood who is in recovery from Lyme and she said that during the worst times for her she went into hibernation. We both laughed a bit because we knew we did not need to explain to each other why this is acceptable behavior. We both understood that to socialize is overwhelming and exhausting. I am living with a good friend now but honestly, I am very happy when she is at work because I know that I won't have to talk to someone if I don't want to. I have my trusty dog at my side and currently am part of Gene Simmons Family Jewels! I find great comfort in the Lyme community because the symptoms of this silly disease are difficult to explain to the healthy world. I am very lucky that I have supportive friends and family that have never expected me to defend my position. I think that Lyme=solitude..and it is much needed. Once we are recovered we will have the rest of our lives to be socially active!