Technical Difficulty Please Stand By

A couple of weeks ago, I lost my head. It happens sometimes.

I call it spaghetti brain and it occurs when I’m in a crash or when I’ve overdone it for too long. I knew I was pushing myself a little too hard because I ended up in a push/crash cycle that typically doesn’t end well. My body continued to give out, and I continued to push until finally my mind followed suit. I had a stressful few weeks and my mental agility dulled until I could hardly say my own name out loud without stumbling over it. It’s difficult to explain, but when these cognitive issues flare up, trying to think and listen and speak makes me feel like a car with the gas and the break petals pressed to the floor at the same time. My thoughts come fast but fragmented; the words pile up on the tip of my tongue, tumble over one another, and then emerge in random order with a lot of stuttering in between. Half of the time the wrong words come out altogether. My brain feels like it’s on fire, and a few times I’ve had to just sit in a dark quiet room to extinguish the mental chaos and regain my sensory composure.

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Besides writing and speaking like a fumbling drunk geriatric, my sense of hearing becomes extremely heightened and over-sensitive. It’s as though a sensory filter was removed and now all sound is allowed in at the same level: loud. It’s extremely difficult to hold a conversation if there is any background noise like television, or if other people are speaking nearby. For whatever reason, talking on the phone turns into a strained task, and often the sound against my ear can become jarring. I feel unable to focus on what’s in front of me, and as a result all sounds merge together and all I hear is incomprehensible noise. Sometimes I feel held hostage to some kind of sensory overload, where sights and sounds almost compete against each other and become so overwhelming that my skin starts to crawl. Suddenly I can feel all my clothes touching my skin, and it’s very irritating. That happened at the coffee shop a few days ago; the music playing in the background and the two girls talking next to me and the glare of my computer screen suddenly engulfed my mind and I felt paralyzed. I’m sure it was fun for outsiders to watch me suddenly go a little nuts, throw everything in a bag and run out of there as though I were on fire. But hey, I’m happy if I can be of any entertainment.

I haven’t written much about the cognitive effects from CFS, but I really should have. This last month has been an alarming reminder of just how crippling it can get. It’s a total disruption on your everyday life, and were I working right now I think I’d surely be fired. I remember when these strange symptoms began when I first became sick at age nine. Suddenly the sound of the vacuum became intolerably loud. As in painfully loud. The same went for hair dryers and the radio in the car and even washers and dryers. It’s not a constant state of agitation, but like the other symptoms, when I’ve done too much, it gets ignited and wreaks some major havoc. Sometimes it lasts a few hours, others a few weeks. But usually with time and rest the mental cloud clears and things improve. This week is already a lot better than last, and I think it’s because I’ve had a lot of solitude and allowed myself to really rest. But still, it’s there, mixing up my word order and making it really difficult to speak in complete sentences. Trying to talk to people when these symptoms flare up is like trying to cook in a really dirty kitchen, with dishes piled in sink and sticky gunk on the counters and no clean utensils. Am I making sense? The point is, it’s messy up there. Cluttered. Jammed.

I laugh at the thousands of words I’ve written in the last few weeks and what a literary disaster they’ve turned out to be. I read over my words at night and find myself scratching out entire pages because they’re all over the place, incongruent, and in general just not up to par. I’d be lying if I said all this didn’t scare me a little, especially because writing has always been something I could do despite being sick. To see that nothing is really safe from the CFS monster is unnerving, and it’s been frustrating to feel held back this way. But I haven’t lost hope. I know it will improve as I continue to rest, as it’s improved before, and I wanted to at least let it be known that I’m not dead, I’ve just temporary lost my ability to communicate properly. It’s not like I’m a writer or anything and that kind of thing matters. :/ ANYWAY, In place of writing I learned some Timberland on guitar and made some drawings of Monty. They’re not very good.

At any rate, I expect my head to recover from the spaghetti state soon, and I’ll be back to catch up with the world once I’m more able. I appreciate the patience as I await my brain. In the meantime, you can read more about the science behind spaghetti brain in people with CFS here and here. Catch yall on the flip side.

Health, Happiness, and a Cognitive Catastrophe

Girls in the Fall

Something happens to girls in the Fall.

It begins faintly around mid-August, once the novelty of summer has rusted to near hatred, and the first few harbingers of Fall reveal themselves, however slight, that our frenzied wait begins. We Southern girls must wait the longest. Not until the rest of the country has surpassed Autumn fully en route to Winter will our Fall truly begin. But wait we will, masterfully preparing (boot shopping) for those dropping temperatures, sometimes near the fifties!

Is it the wait that induces our frenzy? Our DNA? Some primordial leftovers from crafting our loincloths into something warmer, adding fur both protectively and just maybe, because it looked cute on our cave husbands? I don’t know. But no doubt, when those pre-season football whistles begin to blow and that JCREW catalog arrives with its Fall Preview showcasing wispy stick women coddled in cardigans among orangish woodsy backgrounds, it’s over. Fuhgetaboutit.

Like this.

Like, what is even happening here? I like it.

 

Do I want pumpkin shit in my coffee? No. Not even a little. But I don’t mind the deluge of pumpkin flavoring making its way into thousands of consumeable items, because its meaning surpasses flavor. In the Fall Fantasy, it means sweaters and scarves. Do you know the seratonin-dopamine discotque that breaks out in my brain when I hear the words Sweater Weather!? Do you know how exciting those infinity scarves are? Do I wear infinity scarves? Nooo, and yet somehow that didn’t stop me from browsing about 1,400 of them online, salivating at their patterns and the thought that some girl out there will be wearing them and she will look fantastiko, DID IT? How could I be psyched for strangers wearing an accessory I don’t? Um, I dunno. It’s what I mean about girls in the Fall. It goes on..

It means FOOTBALL and something to “do” on Sundays, in your pajamas if you want! It means Red Beans and Rice and soup and STEW. Group text shit-talking and creative/perverted Fantasy Football names. It means PLAID SHIRTS PEOPLE. It means wedding season and chic Fall dresses. It means campfires and that smell on your clothes. Pea-coats and tea and brisk walks in the park. It means your boyfriend looking cute in a grey hoodie sweatshirt. And kissing in the cold, and how for some reason it’s different–warmer, better.

Of course it conjures up the Holidays too, which is another fever all on its own, with very similar symptoms. Just the idea gets my Fall heart pumping! I can smell the live Christmas tree now. There’s no thought of Holiday realities that include the misery of modern American Air Travel and family freakouts or that time I got too drunk during Scattergories and dropped those F bombs in front of concerned adults. These fluttery dreams, even if they are illusions, are at least half the fun. They don’t include conflicts or drunken meltdowns. They do include fancy Holiday parties (never go to any) and sparkly dresses to wear and kissing your love under mistle toe! Have I done these things? No! Does that matter? No! It matters that I could, and the Gap commercials always make it seem highly likely. I even look forward to Holiday commercials! Jeez mahn.

But what I’m truly getting at here is something that invades and consumes the female brain. I may be entering sexist territory here, but I confront it every year–Among friends, on TV, at strangers in the store, at groups of girls at Football games, and within myself. It’s a necessity. (Wait no it isn’t) It’s an industry. It’s huge. It’s had us salivating for months, on the constant lookout, thinking strategically about our approach. There’s a method to it. It’s what the season is all about. It’s what makes the world round.

It’s fucking boots yall.

This all comes down to boots. We’re surrounded and tempted by images and advertisements and boutique windows whispering to us Boots. There’s boots in here. Step inside and be somebody in boots. And there’s so many options. So many ways to go. An obviously unnecessary amount of ways to go. But the boot phenomena is not about need. We’re deep in the Fall Fairy Tale now. Here is our Knight in Shining Armor. Only he’s wearing sassy new BEWTS. This is what made the intolerable heat worth it. Our rescue. Our romance. Our savior. It’s boots. Of every color and every kind.

grey-et-al-is-wishing-for-fall-boots

Boots!

You need a casual brown or beige boot as the versatile go-to. You need rubber snow or rain boots. You need a dressier, heeled black boot. You might throw in a casual flat black as well, depending on your chosen purse color for a while. You’ll need a lace up black one for the edgy but casual Fall outfit. And you’ll definitely require a few different “booties” for various outfits. A heeled black suede or velvet. (Can be worn with pants or a Fall romper or skirt for a night out) (I don’t go out) A neutral flat ankle boot, to wear with a rolled up skinny pant or casual floral daywear dresses. There’s the classic riding boot to go with skinnies and the aforementioned plaid shirt. Or leggings and an oversized Grandfather sweater. You could do the over-the-knee boot too, to fierce up your look, dressy or casual. You may throw in a grey ankle boot, to be worn with an array of colors and can transition between black and brown. THERE’S JUST SO MANY. And we love them all.

It weirds me out and embarrasses me how exciting boots can be and a part of me

Oh God.

Oh God.

Sorry what? I got distracted by this pretty platter of ankle boots. Anyway it just sort of disturbs me how

Give it to me baby

Give it to me baby

What? God, see? This is what I mean..I just got lost looking at this melange of boots and what wearing a few of them will say about me, and whether I’m comfortable with that message should I wear them. Anyway look, I feel a little ashamed right now that I’ve even devoted writing this long with a buildup that landed on boots. There are realer things to talk about. Like things that matter. And I intend to get there. But I couldn’t be helped. This fever set it me a while ago and I’ve been playing it cool, but my eyes were cast on Fall months ago and I could no longer hide all the feelings it conjured up and my weird excitement for plaid. And cardigans. And kissing in cold weather. And BEWTS. Duh.

There’s this part of Fall which mimics the thrill of Christmas. It’s the anticipation. It’s imagining all the fun you’ll have. All the parties you’ll go to. And how great you’ll look doing it. IN YOUR BOOTS OF COURSE. I have no idea if any of this happens in the male brain. Doubtful. Anyway, Is all this a little narcissistic with inflated versions of self and broaching on being so vain you probably think this blog is about you? Yeah, it is. But I think it’s OK to venture into a Fairy Tale a while. But truth be told, Fall is beautiful and I find romance in so many parts of it. And in Louisiana we really do await its arrival a long time. I can’t even be sure it’s here yet exactly. But I can tell you it’s 90 degrees outside today and the humidity is low, and I’m about to play with Monty outside. But first I’ll change into a plaid shirt I bought months ago and some boots that make me happy. Because it’s Fall yall! It’s close enough. It’s nearly Christmas morning.

Heath, Happiness, Fall. Boots.

 

 

Can’t Touch That

I write this from the floor. My knees are scrunched up in front of me and my caps serve as wrist stands. I’d write at my desk–it’s literally called a writing desk–but I can’t sit there long before my neck goes out which causes a headache which causes a sad face. Like this :( That’s exactly how I look when I’m feeling bad, if you were wondering.

Today I woke up feeling rough. Rougher than usual. Still, this is nothing new, and I’ve learned how to let go of plans and make myself useful in other ways from bed. But I was impatient today. I had things on the to-do list that I wanted to tackle and I couldn’t. I confront this a lot, but today it made me mad.

I’ve been trying to make some changes in my life: health-wise and beyond. I’ve been proactive about eating better and since some recent lab work detected gluten anti-bodies in my gut, I’ve cut that out. I don’t miss it that much, in fact it’s high time to go without it. Gluten free is so trendy right now! It’s just that I’ve never liked when people are picky at restaurants. And now I’m that girl, ordering the burger without the bun and asking the ingredients of sauces. Oh well.

Besides the diet, which I’m still configuring, I’ve begun organizing closets and getting rid of excess anything and attempting to follow some type of schedule. There’s catharsis in things like this, but they can prove to be difficult and today is the perfect example of why.

Yesterday I cleaned out this closet in the living room, which has somehow collected my nieces baby clothes, my ex-boyfriends computer, a guitar with a missing string, and THREE brooms among other miscellaneous clutter. Throwing junk away can be a holy experience, and I was beaming throwing excesses out. After that I went to the bookstore to check out a few recommendations from a friend. I found them and then walked around a while. I like the atmosphere there and the quiet way people speak. Then I went to the grocery store for a few things that turned out to be a lot of things. My legs were burning by the time I got home and I knew I’d probably overdone it. (Wuss) But I was in my Martha Stewart zone, or something. When I began to put away groceries I noticed that the fridge could use some cleaning. I took everything out, pitched half of it, washed the drawers in the hot soapy water, wiped everything down well, then stocked it. Admittedly I sat there and opened and closed the door a few times just to relive the magic of my newly pristine fridge. I was done around 10:30.

The truth is I didn’t do that much. And that’s the ticket! You don’t have to do that much in order to feel this bad the next morning. It feels like you ran a marathon on a whim and at the end a bunch of people gathered around and kicked you for no reason. Dicks. When I sat down I realized my whole body hurt and my mild migraine I had all day had turned into a full-blown one. I took some of my 25 pills, then my nighttime pills, read a little and went to sleep. I slept pretty rough, but nothing too out of the ordinary.

When I awoke the next morning to the pool guy knocking on the glass door I felt the way Gary Busey looks.

Good Morning!

Good Morning!

I could barely get my eyes to open fully by the time I got to the door. I’m sure I looked like a zombie in pink pajamas. Anyway, all the “overdid it” symptoms were back. Achy, dizzy, heavy and the worst of them all: weakness. Because there’s nothing to do for that except wait it out. And that’s especially hard to do when looking at the list I’d optimistically made yesterday of all these tasks that needed crossing off. I really wanted to clean out my clothing closet, and sort through medical bills. You know, fun stuff! They would have to wait.

The thing is, it’s OK. This is how the illness works and I overdid it, just as I’ve done hundreds of times before. I’ve learned plenty of ways to make the day count from the couch. I’ll rest and improve over the next few days and remember that compared to the past, this is truly small potatoes. I don’t write the details of my day to whine or seek pity, but to show what a huge disruption the illness can be. It feels like I am always playing catch up with the rest of the world, and this is probably why. I just tried to plan two days and it went off track. There is such a huge variable to consider and it’s often anyones guess, so sticking to things is a guessing game. Beyond that, I write because I’m still trying to figure out how to do this. How to have a fulfilling life, one that I am proud of, without upsetting the sleeping sick dragon inside me. It feels like a continual conundrum, and maybe it always will be.

Life keeps changing and I constantly have to re-mold how to live it. I am in a new relationship which is great. But it’s also a new challenge. Introducing him into my weird sick life has been difficult on both ends. The illness is confusing, my life lacks structure and the circumstances just aren’t normal. I forget that my life requires explanation, even defense sometimes. In the beginning, I loved the escape I felt meeting someone new who didn’t know me as a sick person. It’s like visiting a place you’ve never been before and feeling like you can be anyone because no one knows your past. I thought we could keep going without having to confront it seriously. That was stupid. But it felt good to me, good I hadn’t felt in a while, and I went with it. Obviously that approach dissolved and at some point we both had to face the music.

I don’t always consider that to outsiders, my life isn’t normal. I forget that most people aren’t sick. They don’t have to take a bunch of pills in order for their bodies to do what they’re supposed to. They can go to work, attend social outings, fall asleep on their own at night, and wake up and do it again. Something I did once but now I am in awe of. I forget that being sick effects other people, not just me. I realized that being continuously ill and taking pills all the time can make other people uncomfortable. But the truth is it does, and that’s OK too.

I think the hard part for partners of sick people is that they feel helpless. They are constantly reminded that we’re sick, but there’s not a lot they can do, or say, that will make it better. And that can wear on a person, as much as it wears on us to be sick. In my case, the healing doesn’t come from words. Nothing they can say will fix it. It’s more a matter of being there– sometimes a hug, holding my hand, or just laying together, feeling the warmth of someone else’s humanness, and yelling LIFE IS HARD BUT IT’S OK! Figuring it out and adapting to what life with chronic illness means isn’t very easy, but it continues to provide me a lesson in surrender, for those around me, too. Sitting with the pain and accepting circumstance and just allowing the moment.

I think the thing to remember is that even though illness interrupts plans and SQUASHES OUR FUN SOMETIMES, it really can’t take away the ethereal, elusive thing that makes each of us specifically human. We are still who we are underneath all that moaning (I find I sigh a lot) and illness can’t touch that. In fact I think if we try really hard and lean in deep to our experience, we’ll find it can make us an even better version of ourselves. I forget it sometimes during dark days, but somewhere in my depths I know it to be true.

Health, Happiness, and Ultra Clean Closets