OMG! Do I have my keys?

OMG! Do I have my keys?

And other embarrassing brain-fog incidents

By Liza Zoellick

One of the most troubling and annoying symptoms of both my Rheumatoid Arthritis and Fibromyalgia is brain-fog. I’ve talked about in a previous post but time and again, as symptoms go, brain-fog comes in at the top for winning the “most annoying,” prize.

We’ve all been there, talking to a friend, significant other, co-worker or worse, boss- and you hit a road block in the midst of a sentence. Your brain suddenly goes into hyper-overdrive, wildly reaching into the mental word bank, trying to figure out what goes in that blank space and in the meanwhile, you’re sweating, embarrassed and feel like a huge idiot. It honestly doesn’t matter the situation or who you are speaking to. Heck, sometimes you’re along, writing, like me, when you stumble into that wall hard. It’s during these times that Google, is my best friend.

It’s not always words that escape me. It’s oh, so many things, such as: “Where did I put my keys?” or “Where did I put my phone?” and “Hey, have you seen where I laid my notebook down? I just had it!” Here’s an excerpt from an actual conversation with one of my kids.

Me (frantic): “I can’t find my cell phone! I just had it.”

Kid: “Did you look in your room?”

Me: “Yes, not there!”

Kid: “Kitchen?”

Me: “Of course I checked there! It’s not there. I swear I just had..” (rolling my eyes, exasperated sigh)

Kid: “You found it mom?”

Me: “Yeah..it’s in my hand.” (huge mental facepalm)

Similar things have happened. My favorite one seems to be with my debit card. It’s happened so often now that my kids don’t even panic when I think I’ve lost it or misplaced it, which always seems to be while I am in the check out lane. We joke around about it at home and I’m grateful I don’t have a typical job where I’d probably lose my mind or embarrass myself 50x a day, but the truth is, it scares me. There are already so many symptoms associated with my immune disorder that are frightening on their own that I would live a perfectly happy life without brain-fog.  But that is not my life. This is my life, with brain-fog and all, which means all I can try to do is laugh, and yeah sometimes get frustrated and cry and rail against the world, “why me?” Then, I go back to laughing about it because it feels better.

Here are a few more examples of my brain-fog moments that might make you laugh or relate:

  • Forgetting doctor appointments even with an appointment card, and setting the reminder on my phone because I’ll lose the card and I’ve typed the reminder on the wrong day. I have shown up to doctor appointments on the wrong day too. That always makes me feel extra embarrassed. Sitting in the waiting room, when they call me up and discreetly whisper, “Ma’am, your appointment is not for two weeks yet.” Walk out with head hanging low and tail between my legs.
  • I tried to keep a symptom/pain journal so that I could try and keep track of any common denominators regarding flare-ups and bad pain days. I started out really well, writing everything down every day. Next thing I know it’s three weeks later and I haven’t written down a thing. Way to go, Liza! People just don’t get it either. I’ve mentioned this particular one to a few people who don’t struggle with chronic illness and I’ve actually been told: “Oh, well maybe you forgot because you were feeling good? If you were feeling badly all the time you’d remember.” Mental cursing ensues with a lot of exaggerated hand gestures. I wish it were because I was feeling so spiffy. But the truth is I just forget.
  • One of my favorites, for the hilarity of it, is word issues. Being a writer, words are rather important and while it is funny, it also seems like a particularly cruel joke to struggle with words. Sometimes I’m great and things flow beautifully. Other times I just face-plant into that proverbial wall. Example: I spent 20 minutes trying to figure out “pin-ball.” I could see it in my head, I could even see myself playing it, but I could not form the word. I ended up going to Google and typing things like: arcade game popular with kids, paddles bounce ball around. Thank you, Google, for understanding me and giving me a list of 100 Pin-ball games.

I do try and take the humorous approach to it most days. There is still the under-current of frustration, sometimes made worse by friends or family saying things like, “Oh, don’t worry about that. I forget things all the time!” Or, “It just comes with getting old. Wait until you’re my age.” I often have to swallow back some colorful comments when I hear that, simply because I know they do not understand. That if I were to tell them some of the scarier times when I’ve forgotten things, like: Coming home from the doctor and not knowing where to go or what turn to take. That it felt like someone had reached into my head and just syphoned out a portion of my memory. I recognized stores but for the life of me could not remember how to get home and it took almost ten minutes, before I got my bearings and made it back home. It makes you feel like you are losing your mind. But I won’t say that out loud. I won’t say it because I’m afraid of how it will be perceived and I’m afraid of scaring people too much. But this is the reality of brain-fog in my life.

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

For a link to her previous columns, click here.

 

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Authored by: Liza Zoellick

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Linette Woron

Or my therapist or the Doctors will blame it on my anxiety disorder. NO. Or the latest is that long term use of klonopin(I use a low dose) is what’s causing it- well maybe, but I don’t think so. Well see. I’ll cut down the pills.

Jenny

Thank you so much for your honesty when talking about “brain Fog” I’ve been fighting Fibro for 30 years, chronic pain now for 19 years. Many other diagnoses but I won’t bore you with that. I’m on Gapapentin and I’ve read that can be a big factor in “brain fog” . I also am on 11 more medications so to me it’s hard to decipher which if any are exactly are causing the problem. When I ask the kids ex: “I ask where my glassss are, and they reply your “glasses are on your head mom” it’s so embarrassing and I look like an idiot to my kids! Not only embarrassing but my kids look at me like I’ve lost my mind, (which at that moment I had!)
I cannot stand it, constantly not remembering where things are keys, phone, glasses I could go and on. It scares me as well. I have Alzheimer’s that runs in my family and I don’t know if this is the start or just “brain fog” or that. Another example is I was writing a letter the other day and I could not remember the city we lived in, not only that but I couldn’t even spell it.ive lived in the same house and city for 20 years. That’s never happened before. Even my husband said something to me , he asked me if I had lost my mind because I couldn’t remember anything at all! I can’t stand it at all. I’m not even alloyded to drive now because my family feels I’m a danger to myself and others. I’m so frustrated and angry, the only connection I had to the outside world was driving to before shopping which I feel like I 16 year old when my entire family tells me I cannot drive. I’ve been crying non stop since then. I have know idea what to do!! Feel so alone ,frustrated, stupid and everything else.

Linda N Coffman

Thank you for making me feel better! I thought it was just me! I can teach algebra all day and work equations, but lose my phone, wallet, glasses, and keys so many times. My son just ignores my freak out and calmly looks for them. I walk to go discuss something important with a colleague but forget what I needed to say. It is not age! I hate that as a fellow pain warrior you have to go through these episodes too! It is frustrating and embarrassing. At least my kids and I can laugh about it later. Thank you for sharing!

Cindy Rempel

I’d moved to a dry, sunny state and thought I had escaped fibro, only to have it crash back ferociously while I was grocery shopping. Fortunately, a neighbor was along to tell me which way to turn out of the parking lot to get home. I was completely lost.

I’d always had problems keeping track of my keys. Now I was in a panic, since no one within 1300 miles could come rescue me with the spare set. I started putting them on a hook inside the front door, and it became a habit that saved me, even on bad brain fog days. Now I keep them clipped to the outside of my purse, so I can see that I have them. Otherwise, I go into a mini-panic thinking I’ve lost them, locked them in the car or dropped them. Again, getting into the habit of clipping them there has saved me. The body does it without needing a functioning brain.

I haven’t yet figured out a habit to keep my words close at hand

Susan

Is ‘brain fog’ a disorder of executive functioning in the brain? My DH has brain damage left over from the HSE (Herpes Simplex Encephalitis) he contracted a decade ago, and he suffers many of the same cognitive symptoms as you do. It’s strange: he’s a tenured professor, and though he can still teach as well as ever (he always has excellent peer and student evaluations), he has a very difficult time managing paperwork, scheduling issues, and, always, finding his keys. His ongoing tinnitus and being in constant, unalleviated pain doesn’t help, either.

My dear, sweet, strong husband is the original absent-minded professor. I love and adore him for many reasons, but his continuing to work, despite the hideous pain he endures daily and the even-worse fatigue is at the top of the list. 27-1/2 years married, and I wouldn’t trade them—or him—for the world.

Phyllis

I’ve had fibromyalgia for 18 years and brain fog was a huge problem. About 8 years ago I was given 2 week free samples of Deplin—which is brand name for L-methylfolate. After 2 weeks, surprisingly I noticed the brain fog was slightly less. Since my income was (and is) only a few dollars above proverty and Deplin is not covered by insurance, (it’s classified as nutritional medicine) I made the sacrifice and gradually over 2 years my brain fog was nearly gone. Since then I have found generic L-methylfolate for 1/2 the cost of the brand name. One website is Methylpro. I doubt if this will help everyone with brain fog but people should get to try it. Beg your Dr for 2 week free samples. Hopefully at the end of 2 weeks you will notice a difference.
Folic acid has to be converted to L-methylfolate in order to go thru the blood brain barrier. Some people’s body does not do that well.
I take 15 mg. I can skip one day a week to save money. It I skip more, the brain fog creeps back.
Be careful not to get micrograms.
Start with 15 mg. Later you can see if you can get by with 10 or 5 mg. A side benefit for me is that my hair and nails grow at giantic speed.
I do not know how to get the fibro community to consider this. I was accidentally lucky as it was prescribed to me to help with depression. For me it did not help the depression but at least I can think straight.

EDITOR’S NOTE: CONSULT YOUR HEALTHCARE PROFESSIONAL BEFORE STARTING ANY NEW HEALTH ROUTINE

The Zookeeper

The undertreated/untreated pain makes my “brain-fog” even worse. I NEED MY PAIN MEDS TO FUNCTION. Pain distracts my brain. I’m not attempting to convince anyone of this fact, I’m simply reporting on my own experiences.

Misty Hoffman

Thank you for your article Liza. I have MS “fog” I guess you can say, coupled with daily excruciating pain (as my meds have been drastically cut. My doctor even said “you can say you’re an addict and get methadone.” When I replied “No, because you know I am not an addict and I don’t want that on my medical records.” He said, “just joking.” Not a funny joke, this is my life being taken away. I’ve already lost my career and law school dreams, now the mother and wife my meds allowed me to be is being taken!) from a crushed vertebrae made worse by a botched vertebroplasty leaving cement leaked out into my disc space and next vertebrae then hardened, essentially leaving a rock in my spine where it doesn’t belong, plus a spinal cord stimulator implant that does not touch my pain and needs to be removed (it’s from 2009) so I can get an MRI to have my brain lesions checked. At any rate, between the MS and pain my “fog” is now worse. My son even commented on how he notices that I’m frequently frantically looking for my phone and keys. I’m sorry for all of my fellow CPP’s that know the feeling. Most people don’t understand – it’s not the same as memory issues due to “getting old”, just as the fatigue is nothing like a typical person being really tired and exhausted. It’s a deep physical fatigue because our immune systems are attacking our own bodies from the inside. I try to read a lot and do mental activities using my brain to help combat the “fog” but it’s not foolproof. My heart goes out to those struggling with fog at the same time as battling increasing pain due to this “opioid epidemic.” I pray the AMA speaking out and the Human Rights report due out soon will help get us to a happy medium in pain care. The pendulum has swung to the opposite direction, as years ago doctors were criticized for under treatment of pain. It’s insane and asinine that our government can’t find appropriate “mediums” on many issues and goes from one severe policy to the opposite!

Maureen Muck

Scariest fog moment yet. Looking my daughter’s stepmom in the face & having NO clue as to her name. I’ve known this gal a long time. I finally had to admit I couldn’t remember her name. I was somewhat embarrassed but I was truly frightened. Is this the start of something more?

Cindy

I really wish I had known of brain fog as a real thing decades ago. I get it so strong sometimes that I see it. For me, it appears as a giant sponge surrounding my brain. When I tell my BF sometimes that I can’t think due to fog, he gets annoyed. Totally doesn’t get it as a real thing. I’ll have to show him this column.

Cindy

I spend half my life looking for things, and last week lost my calendar book in my home for an entire week — and that book has much more than appts in it, it has everything in it. I attribute it to opioids and chronic pain — both with me for a decade.

But when I was still working, I struggled a huge amount at work, b/c I felt taht my brain was so foggy and didn’t know that fibro brain fog existed, and never thougtht to mention the fog to my doctor. I have a ton of minor medical problems and sensitivities that no one else has, adn just figured the fog was another of my wierd things.

I was a contracts lawyer, and at a new job, it took me 3 whole weeks to read a document that should have taken a day at most. Luckily, I had a boss who didn’t know what was going on and paid no attention to me, and my workload at the time was light, and so I got away with it. But I’ll never forget taht as the worst example of trying so hard to work but not being able to perform.

As to word retrieval and all the rest — there are so many causes of those, including meds.

The first med given to me for my surgery-caused acute chronic pain caused horrible word retrieval issues, and I had no idea that the cause was that Rx, until I got off it b/c we decided it wasn’t working well enough. Thank goodness that Rx didn’t help the pain, b/c I was terrified of having early onset Alzheimers.

My big problem these days is spelling — scary since I spelled better in grammar school. I was the best speller, and now I keep mixing up words like “by” and “buy” and “no” and “know” — which I would never have done as a young child. It’s incredibly annoying, and I dont’ always catch it before I hit the send button.

But, the typos here are typos for which I need autocorrect — “taht” instead of “that” and I’m too lazy to fix them.

judy vitton

Thank you thank you for this article! It made me laugh and cry! Laugh because it’s so funny, cry because it’s also my life. And I hate brain fog! I’m scared for my kids (11 & 14) who are affected by it…just last weekend I forgot to take my son to a Boy Scout event (I have a day planner, open in the kitchen, that I call My Brain, but I forgot to write it down). I’m also scared about how long I’ll be able to keep a job…not much to do when your brain isn’t always working properly! Anyway, I know it’s a serious matter, but thanks for the laugh…I needed it!

Dorothy

I think the worst day was losing my wedding ring. We were putting hay in the barn when I removed my glove and realized it was gone. Of course I shook the glove and checked my clothes before we swept the entire barn loft, finger combing through the loose hay while I cried buckets. When I went in to tell my husband, I pulled off the other glove to demonstrate. Only to find the ring, on the left hand, right where it belonged. I finally quit wearing my ring after enough panic situations.
Words. Always. For years I asked the doctors if I had alziemerz or dementia, even took meds for those, although they generally said I was just tired and dont worry. No one considered brain fog as part of fibromyalgia or the menieres disease I’ve had for 55 years. I can clearly remember being in jr. High. Trying desperately to remember “grass”. Knowing it was green, picturing it on the ground, sitting in class with no word.
Thank you for telling it like it is.

Maureen M.

Hi Liza, Great and humorous post!! I can relate 100%! I’ve been in a lot of flares since I moved into a new home in Sept. It’s taking my body forever to get re-balanced.
I’ve had to hire handymen to do some things for me and I’ve noticed over and over with dealing with them that my words go in circles often trying to find the right ones to say what I want! So Embarrassing!
The other morning I poured my coffee into my cup… then I proceeded to open the top of the coffee maker and pour the cream into it instead of into my coffee cup!
That one made me laugh and shake my head but… it scared me! LOL
Here’s to having FOCUS! 🙂

Virginia

Oh, girl, I’m right there with you, though I’ve not ever forgotten how to get home. In fact, I get to where I can’t wait to get home and try to find ways to leave early most times when the situations I’m in are still going strong and will be for sometimes hours yet.
I not only get frustrated, I get angry. At myself mostly. At how clumsy I can be. How things just don’t work for me anymore. Especially the cellphone! Oh yes, this blasted cell phone! I yell, I curse, and only by the grace of God it doesn’t go flying through a window! If I would only learn to just set it down, walk away and take a breather, then come back later I would find it was just a simple thing I was forgetting to do. But I’m too stubborn. And that is my biggest problem with my fatigue, pain, and forgetfulness. I HATE TO HAVE TO ALLOW PAIN TO SLOW ME DOWN, BE IN SO MUCH PAIN I HAVE TO REST, BE SO TIRED I CAN’T GO ON, AND OHH, THE FORGETFULNESS IS JUST SOMETHING THAT SENDS ME INTO ORBIT, AND WOULD SEND ME INTO TO THE OBITS, IF NOT ONCE AGAIN IT BE NOT BY THE GRACE OF GOD!
Oh,My,God, is the Only for whom I’m so entirely grateful for, and is the One for whom gets me through everything, and gives me the grace and the will to keep going, else I would have given up long ago.
So Liza, I’m right there with you and know exactly what you’re talking about. When I was first diagnosed with Fibromyalgia, my first thought was, “oh great, they are telling me it’s all in my head!” because like everyone else at that time I thought this disease was a fraud… See, there, I can’t think of the word I wanted, but you know what I mean, right?
God bless you, sister.

Britt

I didn’t know it was normal for us, thankx, I’m not crazy.

Barbara Snow

What I do to try to keep thins in my mind is as soon as a thought comes, I have a note book in the kitchen or ant scrap of paper, witch I leave in every room with a pen and as it comes in my mind write it down. Than go around the house gather up my notes and write it down in my note book. So as far as meetings go for write down your points

And keep it with you. Always put your keys in in the same place, all the time. And I’m always looking for my phone, NO advice of that. So if you could get in the habit of doing these things life could be easier. Good luck, hope this a little.

Christine

Oh yes! I know it well !
I keep detailed written records of medication Dates, Times, Hours, Days of the Week.
Also a daily journal listing all the important things to remember to do, on any given day, It can include banking, a running grocery list, or deliveries I’m expecting, things other people take for granted.
I know Alzheimer’s hasn’t set in yet but treatment medications can play tricks with your memory.
Like an old school remedy “Muscle Relaxer” used with Trigeminal Neuralgia.
Talk about pre-planning to do anything and writing it down is a must! The daily calender is a must have and lastly the note on the door to remind me to take my phone with me, plus take the garbage out. The cans are in the back of the property so if I’m out to walk to the closest stores and mail box I can travel down an alleyway for a half block.
Not to mention on days breakthrough pain is not as severe my detached garage is located to the back of the property also.
For me personally keys are not an issue I can’t leave my home without them, my doors are locked manually with the keys!
You are not alone…………C.