Tag: normal

Who am I?

I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.

An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.

Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.

It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.

Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”

Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience.  “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.

How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?

Who am I?
Who am I?

 

Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.

Take care Warriors.

Until next time – B

**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.

Advertisements

The Turbulence of Lyme Symptoms

http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html
http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html

One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.

Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?

Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.

So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.

Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.

Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already!  🙂   -B

The New Normal

One of the catch phrases in my line of work, education, is that whatever new thing that comes along, and believe me there are so many “new” things that come our way, is that this new idea, strategy, system, curriculum, etc., is the “New Normal.”  It is a phrase used so often our line of work that it really carries no meaning anymore. However, I started thinking about this phrase in regards to my own health.

rockclimbimg

Although I do not like to admit it, I am fairly stubborn when it comes to my work ethic. What I mean by this is I will sacrifice pretty much everything else to “get the job done”!  And, I have been happy to do this most of the time. My work is rewarding, challenging, fulfilling, and interesting. Unfortunately, with my health compromised as it is, the work has become very difficult to perform. It is mentally and physically exhausting. It was this way even when I was in tip top shape, but I was able to balance it out. Now, I force myself to get through the day, sometimes counting how many hours or minutes I have before I can head out to go home.

I HATE this. Really, I do. Already, I have made compromises in terms of work, compromises I didn’t want to make at all. But, I physically cannot keep up like I used to do. Meetings after school? No can do. Extra duties during the day? No can do. Saturday workshops? No can do. I am mostly limited to the 8-9 hour work day, five days a week and even just that can be like climbing Mount Everest. My weekday evenings are spent laying on the couch like a zombie. Sometimes, on the weekend, I can manage a night out, but that is very rare indeed. It is all somewhat surreal. Like this isn’t my life. Sometimes, I think I am having a dream, and I will wake up soon and be able to do everything I used to do at work and otherwise.

But now after 20 months in treatment, I am beginning to realize that in fact, this is my “New Normal.” This is my life right now. It is a hard, hard realism. I’m struggling with it. I would like to believe that if I just keep my nose to the grindstone and keep up my stubborn facade that I will one day wake up and be myself again.Yet, in my heart, I know this isn’t going to happen. While I know I should not look at this as defeat, I feel like it is. I’m wrestling with changing my perspective because I do know that acceptance of this fact is the more positive way to go, but damn, it is difficult!

I am sure there are many of us struggling with this acceptance process. I sure wish it was easier; I wish I could snap my fingers and Wha La! I would be ok with the New Normal.

How do you accept this disease and the hurdles it brings to us? How do you change your perspective about the physical and emotional struggles without feeling like you are giving up a part of yourself?

Wishing all of us peace, -B