Excuse me….I didn’t hear you, what was I saying?

 

question cloudBrain fog.  The words themselves sound almost creepy…like they belong in some poorly made horror film.  Say them to any normal healthy person and you are likely to get looked at like you just recited the entire works of Shakespeare in Pig Latin.  Say it to a fellow Spoonie and you will get a familiar eye roll and nodding of the head in immediately recognition.  It is one of the most frustrating symptoms of autoimmune diseases and to be fair, probably one of the most frustrating symptoms for those around a Spoonie to tolerate.  Brain fog can cause missed appointments, failure to buy what you went to the store to get and the occasional wardrobe malfunction.  Yes, I said wardrobe malfunction.  Oh c’mon, I can’t be the only one out there who has left for work with two different types of shoes on because the plan to ask someone which one looked better with the outfit was forgotten three minutes after it was thought of.  I certainly know I’m not the only one who has had this never ending conversation with your significant other:

“I told you this morning that I would be home late.”

“No you didn’t.”

“Yes I did.”

“No you didn’t.”

“Yes I did…see, I even wrote you a note about it before I left.”

“Oh.  Ok, maybe you did.” 

Brain fog is a very frustrating condition which is accompanied by confusion and lower levels of clarity. It affects people of all ages and leads to the afflicted person dependent on Post-It notes to remember to do something or even to remind them what they have said. The effects of brain fog leave the sufferer feeling depressed and discouraged. Today, so many of us wear so many hats and juggle so many things at one time, that I have come to the conclusion that Spoonies would make fantastic circus performers.  We are moms, dads, spouses, working professionals, stay at home parents, and yes, even E-magazine owners and their staff writers.  I laughed at the title that was recently given to me by The Spoon Lady herself.  “Executive Vice President in Charge of Social Media, Press Relations Department Manager, Therapist to the CEO, Staff Writer and General Manager of the store at butyoudontlooksick.com”. I laughed at Christine and told her that at the end of that title, we probably needed to add a disclaimer of some sorts that I will not be held accountable for missed deadlines, rambling articles and lost passwords.  I didn’t even have to say why….she knew…we all know.  Brain fog.

Fatigue is one of the main causes that result in brain fog and let’s be honest….when was the last time that you felt really rested?  I’m guessing if I asked for a show of hands, I’d see one or two of you reaching high.  The rest of us would sit quietly.  The sad truth of the matter is that Spoonies never get enough sleep.  We never get enough sleep because we never stop hurting.  Oh sure, sometimes the pain can be dulled to a low roar, but it never goes away.  Imagine waking up in the middle of the night because you have to use the bathroom.  Most of you would jump up, go in the bathroom and then happily jump back underneath the covers and drift off back to sleep.  Not Spoonies.  Nope, we fight to open our eyes that feel like they had been rubbed on with sandpaper for the last hour, slowly roll off the mattress as if our limbs were frozen and useless.  Eventually, we make it to the bathroom only to return to bed and turn on the tv…knowing full and well that there would be no more sleep to be had for the rest of the night. 

Lack of rest and brain fog can really hurt the ability to concentrate and usually leaves the person struggling with memorizing and finishing the task at hand. A quick nap can be helpful in fighting fatigue but seriously folks…who has time for that these days?  We are a society in perpetual motion…breaks are a luxury that unfortunately some of us just can’t find the time to take.  And in all honesty…if we do take a break, we most likely will forget why we were taking them in the first place.  I’ve often joked that life with an autoimmune disease is like that movie “50 First Dates”….every day I have to be reminded of who you are and why you are living in my house.  Oh alright, so that may be a slight exaggeration but regretfully it isn’t that far off from the truth.  We forget things.  We look spacey.  We may even have a hard time formulating words to express what we want to say.  Well, except for when someone cuts me off in traffic….then I have no problem expressing myself, verbally and non-verbally.  So, in the spirit of sharing, here are “Steph’s Tips To See Through The Fog”.

 

Keep It Simple, Stupid….

That is a widely used phrase in my advertising and marketing world.  Any good ad is straight and to the point with a flare for the dramatic….perfect for a Spoonie.  As a result of the unwelcomed brain fog, I have been forced to dumb down my speech. As a person who uses words for a profession, it’s humiliating to say the least. I can’t tell you how many times I am in the middle of a sentence and somehow “lose my words”.  I feel like crawling under a rock and hibernating for the next decade or so when that happens.  I have found myself simply eliminating those big SAT words from my vocabulary and tearing up my application to be on “Are You Smarter Than a 5th Grader”…because quite frankly…when brain fog hits, I’m lucky to be smarter than Kindergartener.

 

Dude Where’s My Car….

Ok, so this happens to most of the adult population, but for Spoonies it is 100% expected.  How many of you have gone to the mall in one entrance and come back out after shopping, swearing that you most certainly did come in through the rows of Wonder Bras in Macy’s.  Two hours later, you are still wandering the mall with a look on your face like aliens had recently stripped you of all forms of thought or communication with no car to be found.  Here’s how you fix this….most cell phones have a notepad application.  Use it.  Make note of what store you parked in front of, how many rows back, which side and what you see as you walk through the entrance.  See….now you have an “X marks the spot” treasure map to follow back to your car.  The only thing that makes this plan less effective is finding yourself saying, “Now where did I put my cell phone?”

 

I need cake mix….why the hell am I in Sears….

 It’s your child’s birthday.  You saved yourself enough spoons for the day to spend it making him the highly intricate Buzz Lightyear cake he saw on tv.  No problem…piece of cake (ack….lame joke), right?  Wrong.  As I repeated the words to myself…cake mix…cake mix…cake mix, I was confident I would remember them.  After all, it was just one simple item.  I repeated it until people stared at me with sympathetic eyes….I thought they felt bad for me because my memory was shot.  Nope.  They felt bad for me because I was in the middle of the lawnmower section of Sears singing the praises of Betty Crocker.  Folks…I have no tip here other than, run to your car, drive to the grocery store clear across town and never show your face at Sears again.

 

I’ll be right there….eventually…

This is by far my favorite.  It’s happened to me twice recently and while I can laugh about it now, when they both happened I wanted to crawl under a rock and hide….but I couldn’t…know why?  Cause I couldn’t find the stupid rock.  I left my office just yesterday after a call from the Vice President asking me to bring a file to her office.  I’ve been working here 6 months; I know my way around the office like the back of my hand, so I jumped up and started down the hallway.  As I reached the bottom of the stairs, I stared blankly at the four hallways in front of me.  Yep, that’s right….I had no clue where to go.  Same thing happens to me when I’m driving, especially when I’m taking back roads that I know so well I could drive them blindfolded. (which by the way isn’t recommended while operating a motor vehicle, I found out.)  But, I have actually sat at an intersection, bewildered at the rest of the directions.  This is where a GPS comes in handy.  As stupid as you might feel, plug your destination’s address in and let it guide you in case of a swift and sudden case of brain fog.  However, in the office scenario, draw a pocket map…people tend to stare when you are wearing a GPS clipped to your belt.  Trust me.

Article written by guest writer Stephanie Kennedy

About Stephanie:
I live in Fayetteville, NC with my husband and 3 always hyperactive and occassionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac’s disease to the original Lupus discovery. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) with a local electric cooperative and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
©2019butyoudontlooksick.com
  • Paula Sheerin

    I often have to pay for parking and now write where the car is on the parking ticket – so I don’t lose the car! I once forgot the way to the kids daycare and just sat in the car and cried before I had to call my husband and ask him. There was no GPS back then, which is great now.

  • Jeananne Robinson

    I adore the Cheshire cat tattoo idea. Hope you don’t mind me stealing. That is how I hope to go….. Fading away to a smile X

  • Kylie Anderson

    I also forget my PIN even though I use it all the time. I can buy something at one store and have no idea what my PIN is when I reach the next store. I know it will be back tomorrow but nothing is going to make it return today.

  • An outstanding share! I’ve just forwarded this onto a colleague who was doing a little research on this. And he in fact ordered me lunch because I found it for him… lol. So let me reword this…. Thanks for the meal!! But yeah, thanx for spending the time to discuss this issue here on your website.

  • Linda

    This link to my blog would give you a bit of an idea. http://scddiet.wordpress.com/2007/12/15/scd-progress-6-weeks-report/

  • Linda

    If you have Celiac disease, you might like to consider the Specific Carbohydrate Diet. Helped my husband no end, and was an amazing insight into genuine nutrition. Unlike the gluten-free diet, you don’t have to be on it for a whole lifetime. In a few years you can gradually go back to eating more or less normally, although your definition of normal food might have changed by then. I think it helps with the brain fog too. Good luck. 🙂

  • Christie Armstrong

    I love that I am not alone…

    If I could just remember that!
    I can frequently be heard saying… in my best Admiral James Stockdale voice… 

    “Who Am I? Why Am I Here?”

    It’s just easier that way! Admitting I have NO CLUE has become habit. It took me a long time to learn to just go with the flow of forgetting. In my field, I am expected to think quickly, be on my toes and be ready to roll with any emergency.At first I was horrified. As I adjusted, I learned to admit my fog and roll with forgetting. My ER Veterinarians are VERY good at prompting me, when I am standing there, with the right drug and NO WORDS for what I am doing!I’m doing, because it’s ingrained, but the words don’t come.Thank god for rote memory and habitual actions, it allows me to do my job, just not communicate what I’m doing!

  • Carrie Funke

    thanks for this i have a blood disorder that they can only call cyclical leukompenia ! that was caused by some chemicals i was exposed to in the navy . you are describing me and i know its silly buts its nice to know im not the only one  this stuff happens to. so again ty!

  • Faith

    Ah, brain fog! My friend and companion. Neura best explains what I deal with too. I have a couple of neurologically based learning disabilities. The key problem is very familiar as many of the problems described.

    Part of my disability involves processing auditory information. So if I am in a very noisy environment with a lot of crosstalk (parties, conventions, bars…), I am effectively deaf. I hear but can not separate the different strands of noise. Everything becomes static, white noise. These situations exhaust me, and despite being a very social, type A person, I avoid them.

    I write instructions, or any important information, down because in two seconds I will forget them. I love Outlook or any other calendar computer tool because this allows me to record all my activities at work.

    Oh, my coordination is affected and when I am tired, man, is it AFFECTED. I walk into things. Humor helps me survive as does hearing I am not alone. I am happy all of you are here.