Invictus by William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Learning from Lyme

It's strange how the daily struggles of living with this disease can shift so subtly. Last month I was dealing with hardcore psychiatric symptoms -- which means there was probably die-off of the infection in my brain -- and struggling to make it through each hour. These days, I'm struggling less with simply existing and I'm thinking about the future. Sometimes thinking about the future is exciting, but sometimes it gets me down because I become acutely aware of the distance between where my functioning and health are currently, and where they'll have to be in order for me to achieve my vision of the future. That's where letting go comes in.

If becoming ill with Lyme Disease has taught me anything, it's that control is an illusion. Like Death Cab for Cutie sings in their song "What Sarah Said": "...every plan is a tiny prayer to father time."
When we're generally healthy, we make plans as a matter of fact. We assume that, unless something cataclysmic happens, we will get to the X on our map of The Future. We assume that there is a Future, and then if things don't go as planned, we mourn what we believe could have/should have been. We forget that our grand plans for the Future are only ideas and never were they actual realities. We mourn the loss of what we thought was rightly ours, though it never was.

I've mourned a lot. I could keep mourning the loss of what I thought was mine for the taking, but I've found my time and energy are better spent accepting what I know to be true: we can tentatively plan for the future and hope that when we get there it somewhat resembles the life we'd envisioned; however, becoming too attached and identified with our plans is counterproductive to leading a fulfilling life for a couple of reasons. Firstly, by becoming attached to and identified with who & what we want to be, and what we want to achieve, we lose focus on what we have now and who we already are (which I believe is essential and unchanging). Secondly, by letting go and focusing our energies on the present, we may find that where we end up is exactly where we want to be -- only we didn't know that 2 years ago when we had our sights set on some pie-in-the-sky idea. Essentially, I believe that by letting go, focusing on the present, and not worrying too much about the future, I will experience less suffering because I will not have lost anything, as I was not holding onto anything. And I will be living a life more in line with my current values. Also, by letting go of that over which I have no control, I'm free to focus my energy on the things I can control, like how I react to the events in my life.

So, that's where I'm at. It's a struggle, for sure. I routinely find myself worrying about the future, and routinely must remind myself that the future will take care of itself as long as I take care of the present. I am by no means adept at this, but it's a start. And it's something that living with Lyme Disease has taught me.

Opening to Possbility

This past week has been a difficult one. I've been experiencing an increase in some particularly awful symptoms as a result of die-off, a phenomenon known as the Herxheimer reaction (a "herx"). Basically, this means that my meds are doing their job and killing my infections, which leads to a leaching of toxins into my body that, for a time, make my symptoms worse (also known as a healing crisis). Most recently, the symptoms have been psychiatric in nature -- to me, the very worst kind of symptoms. I have been moody, weepy, severely anxious, and depressed. It has taken very little to make me feel like throwing a hissy fit, though I have been able to quell those urges. Essentially, I've felt like an extremely angsty teenager again, times 100.

It's one thing to experience an increase in symptoms that manifest themselves physically (pain, oversensitivity to stimuli, nausea, etc.) -- that kind of die-off reaction is no fun either, but I can use my mind to make the experience tolerable. For example, I can meditate; I can use guided imagery to relax my body and decrease my experience of pain; I can distract myself from the discomfort by playing Scrabble and doing crossword puzzles; I can watch a movie; I can, essentially, use the concept of mind over matter to negotiate the pain and discomfort of my symptoms in such a way that I experience less suffering. However, when the pain is primarily psychic in nature, I'm left flailing, feeling as though the ground has given out from under me and it's anyone's guess as to which way is up. Think: Alice falling down the rabbit hole.

So what's a person to do when that which comprises their very sense of self is being attacked?

That's the question I have been struggling with.

I've actually come up with a few answers that helped me get through it:

1. Rely on history to repeat itself: Everything is in flux; change is the only constant (as far as I know). Bad moods pass, as do good moods. Periods of increased symptomatology pass, as do periods of Good Days. Logically, it follows that my increased psychiatric symptoms will pass, too. They have come and gone before; why should this time be different? 
2. Don't try to think your way out of the hole: It's tempting to try to reason your way out of the abysmal place you're in when you feel so awful. DON'T DO IT. "Logic" that comes from a place of severe anxiety and negativity will not be sound, and you will likely think yourself into even murkier waters. 
3. In fact, don't think: Now, when I say "don't think," I don't mean become a vegetable. I mean don't think ABOUT the bad place you're in. Don't think ABOUT what it supposedly means. Or what it says about your character or where in your childhood was the root of your dysfunction. Etc., etc. This will not end well. You'll tie yourself up in knots with these lines of thinking. You'll MAKE problems for yourself. Instead, remind yourself that what you're experiencing is PHYSICAL. It is a result of a BRAIN INFECTION. And once it passes, you will see it for what it was: an aberration caused by a disease; an aberration that others have experienced and that I have read about and that is well known to be a symptom of the healing crisis.
4. Connect with other human beings: Spend time with loved ones who understand that you're going through a difficult time (particularly, loved ones who don't try to 'fix' you). Let those loved ones drag you out of the house, even if you're positive that nothing you do will make you feel better (that's the infection talking). Spend time outdoors if possible. Go to the movies. Go out to eat. Just DO NOT SIT ALONE IN YOUR ROOM, RUMINATING. It WILL make you feel worse, whereas going out may not make you feel wonderful, but probably won't do any lasting damage.
5. *Open yourself to possibilities*: Allow yourself to entertain the possibility that going out and DOING something may change the way you feel. Simply be open to it. This is not an active thing, this opening up to possibility. Rather, it is letting yourself go with the flow instead of trying to control what you feel. Once you let go, it's amazing the number of positive things that can show up in your life.

Yesterday, I grudgingly allowed my mother to drag me out of the house. We went to a nearby park where she did some power-walking and I listened to music on my iPod and wrote in my journal while taking in the beautiful scenery. Wait -- I said beautiful scenery. That's right -- I actually opened myself to the possibility of positivity and, right in front of me, staring me dead in the face, was such beauty. And I was able to enjoy it.

After the park, we went to lunch. I allowed myself to experience whatever feelings emerged.  There were some tears, sure. But there was also this painting on the wall that I couldn't take my eyes off of for the whole meal: it was a stanza from an Emily Dickinson poem I love. It read:

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all....

Each letter was painted in a different colored square, the effect that of a patchwork quilt . In the middle of the square piece of wood onto which this was painted, was a simple rendering of a bird, singing.

I loved the piece's juxtaposition of profundity and simplicity. I loved the colors -- soothing blues and reds and oranges that made me think of a country kitchen. Near the end of the meal, I pointed it out to my mom, who also liked it. It made me smile. I felt a brief moment of something akin to peace.

After lunch, my mother had to go grocery shopping. She offered to drop me at home, since it was on the way. I declined, said I would wait in the car. At the last moment, I decided to go inside with her. Usually, large stores make me disoriented from all the fluorescent lighting and overwhelmingly colorful displays of products everywhere. But somehow, I made it through without feeling very disoriented, only a few of moments of dizziness here and there. By the time we were in the checkout line, I realized my mood had lifted and I felt better than I had in days. I was amazed. Immediately, my brain was off and running, trying to isolate the factors that might have contributed to this Good Mood. But I caught myself and decided to simply accept how I felt and enjoy it.

My first instinct is usually to latch tightly onto the positive feeling and then figure out a way I can manufacture it when next I need it, but time and time again, I find that there is no  one formula for happiness. No way to manufacture it such that it is genuine and true. All I can do is let go, stop trying to fight what I feel, and trust that my mindful awareness of the present moment will inform the next moment, and the next, and so on. Essentially, all I can do is live in the NOW. I can think about the future but that won't change anything. It'll just make me anxious and I'll end up missing what's right in front of me.

This is a lesson I've 'learned' over and over. It's something I routinely forget as I'm tripped up by the little peaks and valleys of daily life. When I'm lucky, and when I open myself to possibility, I remember the wisdom of the present moment and it is transformative.

Back to the idea of my sense of self being attacked. Yes, that is what it feels like. It is disorienting and confusing and I feel irrational. But these are feelings and sensory experiences; they are not Me. What is Me, what is True, is lasting and resides in moments of  mindful awareness. I am the Observer, the one who articulates the experience, who is rational enough to realize that Thinking her way out of a depressed state is akin to digging a her way to outer space.
 

*Note to self: Reread this entry daily.

Ay, there's the rub!

If you have been diagnosed with Lyme Disease, there's an excellent chance the journey to diagnosis was a long and frustrating one. I've heard from more than a few people that the day they were finally diagnosed was one of the happiest days of their lives! I know I cried tears of joy when I was diagnosed and actually felt validated by a medical professional. Too often we have had our symptoms dismissed as psychosomatic. We have been told, over and over and over, that all our lab tests are normal so there can't possibly be anything physically wrong; it must be psychological, here's a referral to a shrink. In fact, we may have come to believe the things our doctors said. We may have begun to question our own sanity. But ultimately, some inner knowledge propelled us forward until we had a real diagnosis.

Though I received my diagnosis over a year ago and am responding to treatment, there's still some part of me that, on occasion, thinks, "Maybe it IS in your head." How could that be? How could I be seeing a world-renowned specialist, be responding to treatment, and still have that question pop up in my head? Well, it's because Lyme Disease is a tricky thing: you never know what you'll feel like from one day to the next. Often, I don't know how I'll feel from one hour to the next. In fact, I'll have days when I feel almost NORMAL (though my version of "normal" may be a far cry from yours). Those days are fantastic and I soak them up, breathe them in, write them down, and generally bask in the glory of feeling Human. However, they're often what catalyze those niggling doubts in the back of my mind. Especially if I have a slew of Good Days in a row. Fortunately (or unfortunately, depending on how you look at it) those doubts stop in their tracks when the Good Days end and I'm holed up in bed, recuperating from the exertion of all the activities I packed into those glorious days!

If this reality is hard for me to swallow, I can't imagine what the people around me must think! Well, actually, I know what they think because we talk about it, but do you see where I'm going with this? It's hard for people to grasp, especially if they're not going through it themselves. But that's where communication and education are KEY. I may have explained the unpredictable nature of this illness to my mother ten, twenty, one-hundred times, and may have to do so again, but each time it helps. Each time she understands a bit more. And when I share with her my own frustration and confoundment at these things that are difficult to grasp from the outside, she sees how we're in similar positions, puzzling over the mind-bending nature of this illness.

In the end, I can only accept what is and appreciate the good days while learning to thrive despite (or because of?) the bad ones. Illness is a bitch of a teacher, but if you're open to it, you'll be amazed at the opportunities it offers for growth (but that is a subject for a different post).

Help a good person out!

Good Mood Gig from SAM-e

I've been voting for Lori (@GoodMoodBlogger on Twitter) for this job opportunity through SAM-e because of the work she does to promote real, down-to-earth positivity via her blog http://seeinggood.com. She's a good writer (with good grammar, thank GOD!) who is not above using her own foibles to illustrate a lesson learned and impart some hard-earned wisdom. Check out her blog and see for yourself. If you like what you read, please vote! You can vote daily. And if you don't feel like taking the time to read her blog, vote for her on faith.

Gratitude

On days like today (read: difficult, painful days), I try to focus on the positive things in my life. To this end, I make gratitude lists. It's harder to find the good when I'm feeling lousy, but it's also an opportunity to look more closely at my life and develop awareness of the things I so often take for granted.

Today's list:

• The fact that my parents' apartment (which I'm visiting) is so full of light! I love the eastern exposure! And the sun does wonders for my mood.
  
• The beautiful weather!
• Colorful foliage; the view from my bedroom window; the view from the living room windows. 
• Excedrin Migraine! (I should be a spokesperson for them, ha!) My parents and I saw Law Abiding Citizen this afternoon and I had an awful headache. Excedrin Migraine took care of it and I was able to enjoy the movie.
• Seeing a movie with my parents.
• The fact that I was feeling well enough to go out and see a movie.
• Time spent with my parents, who are unbelievably supportive (and, really, always have been). I don't take that for granted.
• Text messages with my sisters.
• Meeting new, really solid, supportive people in the Lyme Disease community through the internet.
  
• The following quote: "As long as you make an identity for yourself out of pain, you cannot be free of it." -- Eckhart Tolle (Thanks to Lori, AKA @GoodMoodBlogger)
•  The fact that I can SEE the light, the foliage, a movie, this computer screen -- Lyme Disease has blinded people. 
• The fact that I can type/read/form coherent sentences/speak/express myself in an articulate manner today. A few months ago, it was a lot more difficult for me to express myself due to cognitive symptoms which have since improved!
• The book Living Deeply.
• My Health Journal. It makes keeping track of symptoms, medicine, progress, appointments, etc., really easy. Created by Ashley van Tol of Lymenaide.com
• Dinner tonight: steak, green beans, and salad. My mom makes sure to keep the house stocked with food that I can eat (there are a ton of dietary restrictions with Lyme Disease), and she's a great cook who enjoys feeding people (especially her kids!). 
  
• The fact that there's at least one piece of art created by my sister in every room of the apartment. 
• The feel of the paper in my sketch pad.
• The way my pen glides smoothly over the surface of the page, and the sound it makes.
• The scent of my markers! (They're fruity-smelling.) And, most importantly, being able to enjoy the different scents without getting a headache!

What are you grateful for today?

Catharsis

I live for cathartic experiences. I think most people do. It's why we watch the TV shows we do; so we can become involved in the characters' drama and, thus, tap into our own emotions. I don't know about you, but I'm a Grey's Anatomy watcher. I can't recall the last episode I watched that didn't have me in tears at some point during the hour. And THAT is a major reason I watch it: it provides me with the means to tap into my own 'stuff' that gets buried beneath my everyday façade. In fact, I prefer watching Grey's Anatomy alone because I find it to be a more cathartic experience (otherwise I get too self-conscious to let go and sort-of emotionally 'free associate,' if you will).

TV is just one medium by which I achieve catharsis. Probably the most important means of catharsis for me is SINGING! I love show tunes and used to be involved in the performing arts -- and WILL be again, once I'm healthier. What I absolutely adore about musical theatre is the way each song tells a story, so listening to a show from beginning to end -- or singing it, as I do -- is such an amazing release. I love going through the ups and downs of each character and losing myself in the music. Though, I never really lose myself because the emotions I experience are my own and have their own stories; but since they can be hard to access, I enlist the help of other artists.

Other means of catharsis for me:

• Journaling: Just putting pen to paper without thinking, and letting out whatever emerges, without judgment or regard to grammar. Emptying my head of the detritus that inevitably clutters it after simply living a normal day or going through an exceptionally difficult day. It's like spring cleaning, only it's more frequent and more abstract.
  
• Dancing: I started dancing when I was 3 years old and didn't stop till I was almost 20, and then only because I was sick. When I'm feeling unusually energetic, I'll throw on some music and just DANCE! In my room, in my kitchen, anywhere I may be. And I do it without regard to form and proper alignment -- I simply DANCE the dance of my body in that time and space. It's freeing, it's invigorating, it's cathartic.
• Doodling: I'm not an artist by any means, but sometimes I find I really enjoy doodling and coloring my doodles. It's fun to see what comes out. It's calming. And there are times I surprise myself by really liking the finished product!

I'll leave you with this:

And a question: How do you experience catharsis? Leave a comment!

Air Travel and a Phone Consult with my LLMD

Traveling yesterday was exhausting! But I feel good today. It's strange how, no matter how short a flight I may take, it always feels like it was a lot longer than it actually was. The most tedious part of travel (aside from packing!) is going through security. These days you have to practically undress and unpack, and then redress and repack in record time so you don't hold up the line! I've learned to do the following in order to streamline the process:

1. Wear sweat pants! I normally travel in jeans, but if I'm wearing jeans I'm also wearing a belt, which I will have to take off and put back on in order to go through security. Sweat pants (or yoga pants or what have you) don't require belts and they're way cozier for sitting on a cramped plane for hours.
2. If possible, do not carry ANY liquids in my carry-on luggage! This is a hard one for me because some of my supplements are liquid. But I sucked it up and packed them in my checked luggage and this time no one bothered me about possibly staging an air attack with -- wait for it -- COLLOIDAL SILVER.
3. Wear slip-on shoes! I have made the mistake of wearing my Doc Marten steel-toed boots to travel more times than I can count. I probably lose about 8 minutes taking off and putting them back on. I now have shoes specifically designated for flying.
   
4. I don't know about you, but the idea of walking through security barefoot icks me out, so I make sure I always wear SOCKS. Yes, even if it's flip-flop weather! I don't even want to think about what I might be stepping on.
5. I pick up a bottle of water and a piece of fruit or other small snack to take with me on the plane because they charge for snacks now, and they're expensive (i.e., a small bag of potato chips for $4). This is also good for me because, with all of my dietary restrictions, it's rare to find airplane snacks that won't make me ill.
   
6. EAR PLUGS! Last night, for the first time, I wore ear plugs. I put them in prior to even making my way through security and it was a much less jarring experience. My central nervous system thanks me! Especially since, as we sat by the gate waiting to board, an alarm was going off for about 10 minutes. A really LOUD alarm that would have hurt my head if I hadn't been wearing my ear plugs. It also helped with the pressure of ascent and descent.
   

I woke early this morning because I had a phone consultation scheduled with my LLMD. He's pleased with my progress and believes I have a good prognosis based on it thus far. He added a medication to my already large cocktail of pills, which I will pick up later. It's a multi-purpose drug that should work as a cyst and flagella buster, among other things. I'm still waiting on my insurance company to OK IV treatment -- even if they only pay for a month of it, it's SOMETHING. Once that's taken care of, I'll have my PICC line inserted and the horror -- I mean, healing -- will continue! Just kidding guys -- I DO feel positive about this. I also know the reality of the die-off process upon starting new medication, especially IV antibiotics. But I'm up for it and have an amazing support system that will get me through it.

Off to start the day! Or...continue the day!

Brain too large for my cranium. Ouch.

I woke up with a headache, muscle aches all over, pressure in my head, congestion -- the works. I'm OK with this as long as the pressure doesn't get out of control by tonight because I have to be on a plane at 8:45pm!

Packing for a trip, no matter how short the trip (though this one is 2 weeks long) is never a swift process. Last time I was away overnight I forgot my probiotics -- NOT fun. Probiotics are what keep my body from being overrun by candida caused by the mega doses of ANTIbiotics I take daily. Candida isn't the only damage done to my body by the antibiotics, but I choose not to focus on the bad stuff because the antibiotics are also what are going to get rid of (or put into remission) this awful disease & co-infections.

I was thinking, recently, about the fact that my doc says I'll be on maintenance oral antibiotics once I'm in remission, for the foreseeable future. I'm not a huge fan of the idea of always being on antibiotics, so I've decided that once I'm in remission (fingers crossed!) I'm going to return to homeopathic medicine to totally eradicate the infections from my body. I'm not going to simply accept remission. I'm going to do everything in my power to GET RID OF these bugs once and for all.

I'm feeling positive about things today. Or, I should say, at this moment. I DO believe I will be healthy one day -- and that belief is part of the reason I'm going to be healthy. I know I have the ability to heal myself -- our bodies have what they need to heal -- it's a matter of harnessing the body's innate healing ability and using it. That's something I'm working on. I'm an intuitive person, which is one advantage I have already in healing myself. I would like to learn more about energy medicine and how I can apply it to myself. Finding an energy healer to work with is probably my next step.

Off to finish reading my e-mail and Twitter!