Muddled and confused...could use a kind ear

[Carebear]

Cognitive impairment has been my most troubling symptom for several years now.  I had to leave a job that I loved because of it, and each day is a struggle.  Things have been especially awful for me since the middle of summer and I just can't seem to get back on track.

So many of you know what I am talking about.  I am overwhelmed by the most minute things.  My judgement is questionable.  I forget things all the time.   I get lost on familiar streets.   And please don't ask me to make a decision.

It's really getting me down.  I mention it to my doctors but they all seem unable to offer solutions, other than using coping techniques which I use already.

I know you can't change things for me.  I'm just looking for a kind ear to listen to me vent.  Thanks.

[eija]

Carebear,


I'm sorry for your struggles. I'm one of those who are familiar with them. I, a vocabulary wizard, keep losing words when I think/write/talk. I forget things as if they never happened. I forget where I'm going and/or how to get there. I misplace things, can't keep any order and yes, indeed - am totally unable to make decisions. At work I just stare and can't make myself start doing what I'm supposed to. I feel I'm overwhelmed, lazy, failure, stupid and heaven knows what else.


Starting this week I'm on sick leave (leave of absence - what's the correct word for it in English?) until further notice. Probably at least 'til the end of this year and then some. Ahead of me I have an exploratory study for my ability to work - and that scares me soooooo much! The sick leave will continue at least until the test. After that... I've no idea what will happen.


You're not alone in this. Sadly there are many of us - I believe more than anyone can even think. And yes, the doctors seem to be having a hard time understanding this at all. So even with all the tiredness, brain fog and all other weird symptoms we just have to keep stomping our feet and try to make them listen. It's really all we can.


Hang in there.

[Joe S.]

Carebear, Auto Immune diseases often bring with them brain fog. It was very bad for me a number of years ago. I read a Readers Digest article from the 1990's on two supplements that were found to be extremely effective in rat studies. I started taking these two supplements morning and evening. After three weeks I quit using them to see if the improvement that I felt was from the supplement. It was from the supplements.

I suggest that you may wish to try them also. You can check with your health care professional before you do. Look on the internet for interactions, counter indications, and side effects.

R-lipoic Acid, and Acetyl-L-Carnitine are the supplements that I am talking about. Different forms of Carnitine are found in different countries. Biotin should be added to long term supplementation of Carnitine.

[Daisy1234]

Carebear,

I am sending you gentle virtual hugs across the internet, and many empathetic positive thoughts for what you are dealing with.   

I too have been hard hit by the cognitive dysfunction associated with Sjogrens.  Sometimes out of the blue, I start mispronouncing my words by switching the first letter with the last letter of the same word.  So instead of saying" tired" for instance I'll say "dired".  How weird is that?   These episodes can last a long and embarrassing amount of time.

I try to avoid letting people see me when I get these mind mixups as best as I can, but one day not that long ago, my sister was driving me back from a medical appointment and sure enough, I launched into one of these really bizarre word mixup sessions.  She was shocked but try as I may, I just couldn't get the words out.  No I wasn't having a stroke either, its just plain cognitive dysfunction and like you, I too had to leave my career when my body was betrayed by this disease.

So, all this to say, you are not alone and I really feel for what you are going thru.  I just wish I had a magic wand to wave to make it all go away for all of us. But since I'm all out of magic wands, I'll just send positive thoughts that tomorrow is a better day for you.

Hugs,
Daisy

[quietdynamics]

I too would get lost in places that should have been familiar. I would look for "something" to trigger recognition. Stop at a red light and be "location clueless" in town!  My daughter once said in earnest that she was afraid I was going to forget her name.

And I was always known for being sharp and bright, I loved learning everyday.

Now I have to do probate and I just cannot wrap my brain around the simplest thing. Suddenly, I need someone to hold my hand and guide me. Volunteers can PM me ..Please.

I am sorry you left a job you loved. I had to do the same and I grieved. My work was so much more than a job; it was a joy and a challenge ( I worked with students).

If possible I suggest going to a neurologist. I did get tests done as symptoms increased, which I hope yours will not. And meds did help, although I am not the same as I was. After awhile, ( Nuero had me keep a diary) I had noted that cognitive impairment parallels flares in my situation. My personal theory is it is inflammation based and I have started taking 81mg aspirin in the AM, along with omegas. But if you are going to have any tests done supplements will skew them ...so you would have to cleanse them from your system prior to tests. 

Others have had test with other Drs. and they will hopefully post with ideas for you to consider.

Please let us know how you are making out in your quest and now that you are not alone.

[jpd54]

I, too, have severe cognitive problems.  I was tested by a neuropsychiatrist.  After taking into account my age, I only scored in the 6% and 7% for short term memory and attention span.  That means that 93-94% of the people my age did better than me.  That was quite a shock for someone who has 15 hours above a master's degree. 

Sometimes I can't remember the 1 or 2 items I am going to Walmart for.  I drive past where I am going or where I am supposed to turn.  Someone will ask for something and I just look at them.  My attention span is gone.

My doctor told me to keep working word games and puzzles.  I try to do that, but it doesn't always seem to help.

I got extremely depressed over it.  My doctor put me on Lexapro to help with the depression.  I'm not sure it helps.

I met a friend the other day at the mall and asked about her daughter.  She started hysterically laughing at me because I called her daughter by the wrong name.  I tried to explain to her about my condition.  That I didn't mean to do it and I'm not stupid.  Of course, she just looked at me like I was crazy.

Many people at this site have "brain fog".  Don't feel bad.  Sometimes we just post on here about the silliest thing we have done.
My husband and I just laugh now about my episodes.  You will learn it's better than crying.

Stay on this site and you will feel much better.

   Hugs to you.

            Jennifer

[connie50]

I to am so sorry you are feeling this way.  I think I understand what you are going through in a milder version.

I have noticed on and off for a fair while now that I too have difficulty in making decisions, creating a schedule at work, logically following the household budget add making a commitment , it seems like something is missing.   I have a hard time following/creating things sequentially.  And this coming from a person who lived by a budget and "was" very good with schedules and numbers.

I kind of irritated my husband over the weekend because I had to make a list of expenses that come out
of our pay checks so that I could keep it straight and not forget a bill (never had that problem before).  He took it as I was telling him how much (or little) was left to spend on extras.  He kind of understood once I told him why, but he has always relied on me keeping the books and he looked a little worried.  He's worried ? Given his lack of bookkeeping/budgeting skills, if I get to the point that I can't do it anymore, we're in trouble.  I think it's time to get him more involved in the monthly budgets.

It sounds like alot of us have similar issues and sometimes I can laugh at myself and other times it's just too scary and frustrating.  Like Joe says maybe I should say "I love my body, I love my body, I love my body"
Yeah, not today, maybe tomorrow.  Today I feel like saying "my stupid body..."

[shellthebell]

Carebear I can relate and in fact, I have been reading a lot of posts lately about brain fog. I don't think that people who don't experience it really understand how frustrating it is. Even Doctors seem to downplay how upsetting it can be. I have problems with memory and speech. I say things that are funny, because the words are completely wrong. For example I would say, " can I have a bite of your blanket" or something like that. I don't even know where these words are coming from. I thought it was just me, but I have found lots of folks here who mix up words. And the other day I texted my husband and sent the message, then put the phone to my ear thinking I was calling him. I sat there waiting for the phone to ring until his return message buzzed my ear. I get really mixed up about simple stuff sometimes and it irritates me! But on the bright side, I can watch movies over again these days because I don't remember watching them the first time. 

[eija]

I keep saying to my girls:


"Don't listen to what I say but what I think I'm saying"





They are good girls and they've learned to do that

[sjenny]

I have episodes of brain fog - my mother-in-law sneers at me when I don't remember every detail of some event (I'm lucky I can remember the event).

I decided to be kind to myself, even when others are cruel.  One good thing about brain fog is you can't carry a grudge for too long - cause you forget what made you mad in the first place.

Ronald Reagan used to say the good thing about Alzheimers is that you meet new people every day. 

[Carebear]

Thank you everyone for your kind words.  I somehow felt relief the instant I created this post.  Keeping it to yourself all the time can sometimes cause even more harm.  It's nice to know I always have "your ear".   

I was under the care of a neurologist, and I had two neurophysiology tests done 12 months apart.  My test results were the same each time...good news that things had not gotten worse.  I was counseled on coping techniques which helped until my life became full of stress last summer.  Things haven't been the same since.

But today is another day.  Full of potential and possibilities! 

Thank you again for your kindness.  You have helped me more than you will ever know.