With so many things I can do with my time, I have quite honestly never been bored. Even in waiting rooms, hospitals, airports. I’ve always been an active person, so when I got sick or better yet, progressively became very sick, activities began dropping off to the point that my main activity now is work.
These past few years I’ve spent much of my time not at work in bed. Still, I could never say I have been bored. In pain, nauseated, yes. When first diagnosed, I really struggled to read anything more than a few sentences due to the severe brain fog and lack of concentration (many are diagnosed with ADD before Lyme disease).
I occupied ( occupy!) myself with reading a lot of blogs and news stories. I’ve listened to music. I’ve watched mucho Netflix. I’ve used my happy memories to escape from the present symptoms I might be experiencing.
I’ve never understood this idea of “being bored.” Do you? What kinds of things do you like to do to keep yourself occupied or if like me, to keep your mind occupied?
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.
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
Yeah, so this is me right now. Up and down, up and down. Normally, I’m a very steady personality. I do not anger easily. I’m good under pressure and stress doesn’t phase me for the most part. Now, enter Lyme. Neuro-Lyme, specifically. Can someone just say, Stop the Madness?!?
And we’re off! When I was first diagnosed with Lyme disease almost 3 years ago, my major cognitive symptoms were short term memory loss, word recall, concentration (I had NONE), and trouble reading. All of those have improved over the course of treatment. If I am experiencing intense fatigue or stress, they all will rear their ugly heads. Monsters from the deep, I like to call them!
But probably for the past six to nine months, and uhm, this would be way more if you were to ask my hubby, I have experienced these weird mood swings. I guess they can be comparably to PMS mood swings and yet. Along with the mood swings, sometimes, anxiety comes out to play as well. I honestly can say I have never had anxiety except for maybe right before a huge exam or before speaking in front of a crowd. And I never called these feelings “anxiety.” I just called them stress. When I say mood swings, I mean like minute to minute mood swings. Yes, sometimes the mood swings can take a few hours but then sometimes, not so much. From the outside looking in, these swings really can be “crazy.” Anyone else have this or had these in the past?
Example. We go to lunch. Everything is ok. We have a nice lunch, and we have cordial conversation. LOL. Then, afterwards, hubs wants to change the oil in my car so we have to go to another small town about 20 minutes away to get the oil. Yes, the joy of living in the country. Hubs asks me with all seriousness, “Are you going to be alright if we make this detour on the way home?” He means can I handle it energy-wise and mood-wise. Well, of course I can!
I’m good. We shop. I look at decorations. I look at shiny stuff. Then, I start getting tired. It hasn’t been a long time from when I first made the decision to go along with the oil shopping trip either. Really, in non-Lyme time, it has only been about 20 minutes. I’m getting overloaded with stimulus and decision making – I’m trying to find some decorative tins for baked goods. There are a lot of people, a lot of talking, a lot of music. My head starts to feel foggy. By the time we check out, I’m done (and this is less than an hour trip mind you). Some strange time warp happens, and I start acting like a 2 year old who needs her nap. My husband is confused by my behavior, as am I. On the way home – a whole 15 minutes – he’s like, “Hey, I thought you said you would be alright?” Sure thing. Me too! I made a point that I never used to be this way, mood changing faster than the weather, and he agreed.
Overall, yes, the neuro-symptoms are improving but I’m still having these mood swings. Happy one minute, bummed the next. Upbeat and positive, then solemn grumpy pants. Pepper in some anxiety, and presto! Inner Gremlin appears!
So, how many of you suffer mood swings and/or other neuro-Lyme symptoms? And how do you manage these?
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.
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?
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.