#YOUROCK!

Yesterday was one of the most sucky days I’ve had in awhile with this Lyme lifestyle (ha ha. As if and if only!). I was in a flu-like state for almost 12 hours straight with sincerely no relief. The only thing I could do was lay in our very dark bedroom with my eye sleep cover on and stay very still. Moving at all only increased the nausea and the abdominal cramping. The only solace I experienced was the snuggling shared with me by our 3 Chihuahuas.

But today, life has been looking much better. I was able to be up all day, cleaning the house, organizing and getting ready to go back to work tomorrow after a long break.

Even better, after a year and a half of blogging my ever so minute trials and ramblings, you, readers, have helped me conquer my goal of reaching 700 audience members. In fact, just now, we have a wonderful group of 820!!  OMG. I am so very delighted and humbled. Next threshold, let’s take 1,000! Lock and load!

I thank each and every one of you for deciding to use your valuable time taking a shot with me and this blog, but thank you especially for reading, for opening your hearts and minds, and for listening. I am filled up with joy and with gratitude. You’ve made my weekend, and so far, my year! 🙂

Best wishes to you, my people. Be good to yourselves and never stop feeling the wonder. XXOO – Belle

6 Tips for Surviving a Herx (flare)

Happy New Year, my people!!  I hope your holidays were calm, relaxing, and full of wonder. I also hope that everyone experienced many, many pain free days!

From the HubbleSite a gorgeous Globular Cluster M4

IDL TIFF file

 

I know I can’t be the only one out there that has those horrible hours or days where you wake up or are woken up by what feels like the very worst hangover –Ever – but no alcohol was involved at all. The Lyme Hours, I like to call them. Not catchy, but it seems to clarify the time lost to the symptoms and the overall suffering involved.

What do we do during these Lyme Hours to make it through? I had one of these days yesterday, from about 3 a.m. until about 3 p.m. and it got me thinking, how do we all cope with this time while we are feeling so awful to just try to make it a little less dreadful? To distract us from the headache, the nausea, the joint pain, the brain buzzing and such?

Anyway, yesterday for me was absolutely NO BUENO for a really long period of time. My husband, who left for a few hours, asked me when I actually was able to get out of bed and actually function, “What did you do while I was gone?” I’m sure I looked a little cray cray after 12 full hours of feeling like a semi had run over me, so I am pretty sure he regretted asking, but my answer was, “I was being sick.” Doin’ the Lyme time, ya know?

These are my top 6 things to do to try to get out of myself when I feel this totally and utterly at the mercy of the Lyme attack (aka chronic illness flare):

  1. Binge on Netflix. Now, this is only if I do not have a migraine, of course. There are plenty of awesome shows out there. If you don’t have Netflix, maybe try Amazon Prime or Hulu.
  2. Watch You Tube. Again, if no migraine is involved, I watch animal videos on YouTube. You must check these out even if you are feeling well! My favorites are Silly Goats and/or Silly Bull Dogs. And if the noise bothers you, definitely watching these without sound is just as entertaining.
  3. Listen to meditations either through an app or on You Tube as well. Sometimes, a soothing voice can really just put me at ease. For the times when I can’t even process speech, I listen to nature sounds meditations.
  4. Think about a happy memory. I tend to go back to childhood memories more than not. I think through as many of the details as possible, and then I think about the feelings involved. When I have a bad headache or even sometimes a migraine, this can help me just get out of the pain in my body even if only for a few minutes.
  5. Set up a plan for what comes after this ugly trip when you are able to actually do things. Sometimes, I think of something fun I want to do when I get to feeling better, whether that is going out for a movie or reading a book. Often, I get elaborate and a tad bit unrealistic, you know, plan my trip to Italy, how I will make my first million…..In the end though, it doesn’t matter at all if I end up doing anything I consider while I am experiencing the Lyme time; it is the planning that leads me into another world where I am not hurting or nauseated.
  6. Make a gratitude list in your head (write it down if you can function that much). This can be a serious challenge while feeling so damn sick, but it really can be freeing. It keeps me as positive as possible while giving me a task to focus on other than all the issues happening to make me feel so ill. I know it sounds kinda smarmy but it does work.

Not all of these work all of the time and sometimes, none of these work. What kinds of things do you do to alleviate symptoms? What helps you to get through the rough times? Please share. I’m sure we could all use a few more tricks in our bag!

Thank you all for following, reading, and commenting here on this blog. It makes my heart happy. Best wishes for a wonderful new year to come! Peace – B

 

Concentration is the Name of the Game

Are my people counting down the days until Christmas? Did you make those brown paper bag reindeer with the colored paper rings to keep track of each day until…? If you celebrate Christmas, well, Happy Christmas! And if you don’t, then Happy ——! We celebrate everything here. Why not? Life is so short. So only six days, my pretties.

Today, I want to explore the topic of Lyme and concentration. Or the lack of this skill, really. While I have never been a huge fan of multitasking – I think this word means doing a lot of things with less quality – I never struggled all that much to do it. In the past, working as a bartender, a waitress, a food and beverage manager, the skill of multitasking has served me well (no pun intended). As a teacher now, juggling 100 different things at the same time? No problem. B.L. though. Before Lyme. No Problem.

focus-and-concentration

Until Lyme. A.F.? After Lyme? Multitasking? Surely, you jest! Holding more than one thought in my head at any given moment? Impossible. Seriously. When I was first diagnosed about 3 years ago, I could barely even read anything over a paragraph long. For one, I had headaches or one headache, non-stop. Two, I could not follow a train of thought that lasted more than 4-5 sentences on paper. This also applied to listening to thoughts/conversations. The more I tried to concentrate, the harder it seemed to understand. It is difficult to explain. Some people call this brain fog. And while that is good description, it is also like being stuck in quicksand ( in real life, this has never happened to me but I’ve always been told I have a vivid imagination). So like quicksand, a thought would come into my brain and the more I tried to sort it out, extend it, apply it, the more it became unreachable in my mind.

And while I am using past tense verbs to describe this issue, this symptom does return periodically. I’ve noticed it becomes more amplified in several instances, such as when I am trying to get work completed on a deadline, when I am fatigued, when I am stressed, and when there is too much stimuli in my environment. It is the same exact way I used to feel in my twenties when I was busy  with work and college and sleep was a nap here and there. Just no concentration skills.

I guess I am thinking about this because of the holidays, the end of the semester, the stress, the lack of concentration, the brain fog, the quicksand, it’s all back and with a vengeance. But, these past few weeks at work have been nonstop kinda crazy. Finals for the community college, grades calculated, grades entered, students exempting or not exempting, students with grade issues, passing rates, plans for January, syllabus organizing and writing, end of the grading period, end of the semester, final exams, grading said final exams, and etc.! My colleagues are also feeling a little crazy so I am chalking up my exacerbated issues to the end of the semester shenanigans. To counteract my brain’s lack of focus, I like to sit in a dark room with absolutely no stimuli. This seems to help a bit.

Have you ever had these symptoms? Do you find it difficult to concentrate? How do you deal with it?

Hoping your Saturday is filled with good stuff – B

 

 

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.