The Battle with Brain Fog
I made my living for almost 20 years in real estate, and the funny thing that set me apart was the ability to remember things that others could not. If you told me your name six months ago, I would remember it six months later.
Lupus does all kinds of strange things to you. It creates so much fatigue that sometimes remembering my own name is now a challenge. Fortunately for me, I still have a knack for remembering names but I now seem to forget if I’ve taken my meds. Sometimes I even miss appointments because I forget to put them on my calendar … so I don’t forget to show up. (Talk about irony!)
For someone whose life was all about making appointments, I was so anal retentive about being punctual that in addition to collecting shoes back in the States, I had a collection of clocks. I don’t “do” late and when others are tardy without reason, I am highly annoyed. Now I find myself being late or completely missing appointments, all because of lupus.
Lupus also makes putting complete sentences together a challenge. Ever hold a conversation with someone who forgot what they were saying mid-sentence? It may happen on occasion to most people, but it happens more frequently for those of us battling lupus. I don’t know why that is, I wish I could do some sort of memory exercise to shore up my brain, but there is nothing other than acceptance that helps with this.
Photo courtesy of Kellie McRae
I am learning not to become aggravated with these constant interruptions in my thoughts. I have become a notebook collector. I find that if I physically write something down, I will remember it longer. Sometimes I laugh because I don’t have a lot of frills in my apartment, but I do have a pile of notebooks that I refuse to toss out when they are full. I go back on occasion and read through to make sure I haven’t forgotten something “good.” I also check to see if there are any tasks that I have not yet finished or tended to.
As an independent business owner, this lack of remembering things can truly be a challenge. I recently stopped doing a lot of things in my online business because it was just too much to remember. I have decided to find the absolute most important things and focus on them.
As much as we don’t like it, we must learn to work with the new boundaries that lupus has set. It does not mean we cannot live a life that we want, it just means we must learn to prioritize so we spend more time enjoying and less time being annoyed.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Eddie Phillips
Hi Kellie, oh that brain fog, it is the most frustrating thing for Julie, she puts up with the pain, fatigue etc but the brain fog can have her in tears sometimes.
As a carer I think it is equally as hard, as we have to find ways of reminding our warriors of something that was said the day before or even an hour before. We also have to do this in a way that does not upset them even more.
I have also become the best secretary ever, having to remind her of appointments, making sure she takes her meds and with the appointments getting her to get ready at least 30 minutes earlier as it takes longer these days with the neurological issues.
The hard part is reading posts on FB where the partner is not supportive and I just want to help everyone in that situation.
As always our hearts go out to you
xx
Kellie McRae
Julie is so blessed to have someone in her corner, I always feel bad when I see people with partners that are not supportive as well. I usually have to curb my comments in those cases because if you are only a fair weather partner then that leaves the other person with even more stress in my opinion but since I am single, I try not to comment on matters that I am not really privy to. Anyway, yes the brain fog is tough, I am learning new ways to keep up...oh, wait, let me go right now and take my meds :-) So glad you are a supportive mate it makes me happy knowing that some of us have loving people in our lives who are there when most needed.
Christine M
Hello fellow Lupi;
I appreciate the sharing on brain fog. I can totally realte. My hubby is kind and supportive for the most part. However , he has a really hard time with my brain fog. Thanks for the support you guys.
Kellie McRae
Hi Christine, I'm glad you have a supportive partner, be patient with him because with all we go through, if his only frustration is with your brain fog, that's more than likely because he can see it frustrates you as well. I wish you the best and hope you have fewer foggy days.
Diane
I am the same way I use to remember peoples names could remember little details. Now that has come hard to do. And can be embarrassing when you are talking to someone and forget what you are saying in mid sentence. People that don’t know what brainfog or fatigue is really about. Look at you like your stupid or on drugs.
Kellie McRae
Hi Diane, I sometimes will laugh and blame it on my age. I find that if I laugh about it, they will too. Even people without lupus occasionally have what I call a brain burp. I was in the middle of a serious conversation just last evening with a good friend and I just stopped abruptly, looked at her and asked, what are we talking about? She laughed and shook her head and reminded me and then we went on. Strangers are not as forgiving but it's ok, they're strangers we may never see them again anyway lol and if we do, our brain fog may keep us from remembering them so if they had a bad reaction, they will remember better than us so that might make us the lucky ones :-D I kid but you know we just have to go with what we have been dealt and try not to allow the reaction of others to cause us undue stress.
Johnesa smith
Yes, I can relate! I feel like I'm on drugs sometimes. I used to be good with names, numbers, movie titles & actors. I get very frustrated when Icant remember or I lose thought in a conversation. I have Fibromyalgia & Complex Regional pain syndrome, etc. I write almost everything down but, I sometimes forget where I put the book. I have hard times with simple conversations. I just pray and try to stay positive.
Kellie McRae
I try not to get frustrated because it seems to make it worse for me. I, fortunately and known to always make jokes, when I skip a beat, I am just open and I ask people, what was I saying and do you know if I made my point? They often have sympathy or will laugh with me. I started putting things in my phone and lately, I have been forgetting my phone so a lot of good it does me when I'm out. Staying positive is all you can do but it can definitely be quite annoying this crazy thing called brain fog. :-/
Colleen Souders
I can totally relate. I have a reminder system to take my meds. Thank goodness I only take my regular meds twice a day. I put everything in my phones calendar and hope I don't mess up on the date! That did happen this past week and my daughter corrected me. My husband thought the event was both days too! LOL. He's a keeper. Thank the Lord for Tim.
I had my hearing aids in all day yesterday & one didn't have a battery in it.😁
Kellie McRae
Hi Colleen, I am terrible with remembering my meds (in fact, after reading your comment, I remembered I hadn't taken mine today so thanks for the reminder). Isn't it great to have cell phones with all these bells and whistles to help us? I need to remember to add the daily reminder for meds in mine. Glad you have loved ones looking out for you especially on days when those batteries are iffy in the hearing aids because having the reminders won't matter if you can't hear them :-)
Lindsay parkes
I hate the fog!!. Live on my own and sometimes make such basic mistakes ! Where did i put that? Ect . But i think the worst is when im talking to people on the phone and i cant register what they are saying . I finish a conversation and have no idea what i have said !!! It usually only happens when extremely tired though ! Xx
Kellie McRae
Hi Lindsay, yes I hear you on the basic mistakes. Fortunately for me, I don't actually talk on the phone very often but I write a lot, thank goodness for autocorrect or spell checker because I do often forget how to spell things that I KNOW I have mastered. It really is crazy the things that we can't remember, blows my mind (not being funny) when I am in the full throes of a conversation and all of a sudden, I have zero on what my point was or if I made it. It really does stink. I hope things get better for you on the phone and trying to schedule when you're not tired....hello lupus fatigue, that too can be difficult. However, we surely are finding new ways to cope.
Suzanne Zeleznik
Hi all Lupuies,
Brain Fog is an inadequate term to describe the emotional pain I've gone thru. I had been having --unbekownest to me--"mini strokes" or (TIA's: trans-ischemic Attacks) since at least 2011-2012--forgetting things,
repeating myself...Then In 2015, I had a really big TIA. I knew I was having a stroke at that moment. After having
an MRI, I found out I had been having these brain attacks for several years. I still get them! As much as I hurt physically from arthritis, suffer from kidney/cardiac etc, etc. issues, the Emotional Pain is far worse. It has changed my life! My cognitive decline has resulted in a lot of self doubts,family issues, etc.
if you are forgetting things--names, events, check with your
Doctor to make sure you aren't having TIA's--esp. if you are also on Coumadin ( blood- thinners) for APL syndtrome-( Anti-phosphpo-Lipid syndrome.
Kellie McRae
Suzanne, I literally got to the part that initially said "mini strokes" and my jaw dropped and I don't think I closed my mouth until I was completely finished reading what you shared. Wow, wow, wow! You are making me look at this brain fog in an entirely different way and the next time I go to the doctor, I am surely going to ask about this. I know, brain wise, for me right now, I'm ok because I just had an MRI/MRA about 8 weeks ago because of another scare I had where they thought my brain was under attack. For others though who have not been checked, what an eye opening possibility. Thank you so much for sharing and helping me see that brain fog can be far more serious than just forgetting things. I hope you are feeling much better and not having those mini strokes anymore.
Suzanne Zeleznik
Hi Kellie and other Lupies, one thing that helps me--despite my arthritis pain--is excercise! I work with a great trainer twice a week, and I walk either on the treadmill, or outside with the aid of walking sticks. With my sticks, I can go anywhere--even uphill! I dont care who stares at me! They're Better than a cane!
I also began chair yoga--a very gentle introduction into yoga. It helps my concentration, and general view of life. Exercise helps me deal with stress.
Kellie McRae
Hmmm, chair yoga actually sounds like fun. Right now I am getting some exercise in PT but my strength and lung capacity are minimal but I like the idea of learning how to do yoga while seated.
Christine M
Hello;
Saw the post on sitting yoga. There is a PBS program called "Sit and Fit".
Namaste
E. Wallin
Aerial yoga is a really fun way to work out too! It gets you off of your legs just enough to avoid exacerbating any joint pain, and it's very beautiful and nice & slow. Beginner's classes don't really get you into the air much, but I've found that taking weight off my joints makes it so much easier, especially when my joints are particularly achy or I'm having a fever spell. Also, you have something to catch you or even to use as a hammock if you start getting dizzy/ light-headed mid-workout. Find it to be one of the easier workouts to actually get myself to when I'm dealing with a flare.
Steph
My little tip is to write down as much as happens in a day along the way. If you keep to-do lists, also write in there the things that you are doing that are not on the list, or what comes up unexpectedly. I write down an insane amount of information about emails I've written or responded to (even if of course I can see them in my email list), calls, maybe what I wore or things like that, down to what I cooked that night and whether I watched a film or tv show and what it was.
None of this keeps me from having brain fog or from pausing mid sentence (which wouldn't be as big an issue if it didn't make other people strangely unnerved) at times, but it helps with discouragement when I look around and feel I'm not keeping up. I see that I'm doing what I can, and time will tell if it is also helping in a physical/practical way. At times, with a business especially, it is also important to easily retrace your steps, because brain fog messes with your sense of time.
Thanks for this post!
Kellie McRae
All great tips, I have been trying to keep things in my phone (when I don't forget to take my phone). I am with you on the business thing, I may not record everything on my phone but I have learned that if I am scheduling an appointment to not even let you get off the line until I put it in my phone and then I set the alarm for 24 hours before the appointment, 2 hours and an hour because I figure the more reminders, the better I will remember it. Thank you for sharing your tips, we all can use them for sure.
Lesley Allnutt
How do we know the difference between lupus brain fog and Alzheimers/dementia?? Are we just making excuses or is there a brain scan that can differentiate. I also have brain fog.
Suzanne Zeleznik
Hi Lesley, I thought for 3 or 4 yrs I had Altzheimers, too--Until the evening I had a TIA or stroke, and went the next day to a Neurologist who administered an MRI. You can ask your regular doc for a prescription to see a neurologist. Let the neurologist
Examine you, administer tests, and make the decisions.
Kellie McRae
Hi Lesley, I would never say we are making excuses because brain fog is a known symptom of lupus, however, there are blood tests for alzheimers just like there are for lupus so if anyone is suffering from something more severe than brain fog, it should be found in the blood tests. If your concern is that your brain fog is more severe, please ask your doc about it.Another person on the thread was having tiny strokes, this may be something you want them to check as well.
Cathy Hutcherson
Get an MRI and neurocognitive testing from a neurologist that specializes in this. Mine is a vascular neurologist. They can differentiate with these.
Kellie McRae
Hi Cathy, thanks for the recommendation, just recently had an MRI/MRA :-)