posted
my cognitive issues bother me the most, I want my brain back!
I cant drive anymore, sometimes I would suddenly not know where I was or where I was going, other times just came to heading for a crash. The last trip I almost had a head on with a moving van.
I constantly dont know where Im going in my house, all of 6 rooms, and when I get there cant remember why Im there anyway.
Thank God my wife does the shopping! We'd probably have 24 half gallons of ice cream for the week.
I used to be a quality supervisor for Newbalance shoe, I had huge responsibilities, which I thrived on, and was very good at quick thinking, managing people, spreadsheeets-reports-etc, great at troubleshooting, and so on.
When I left work....again....last august, nobody could understand my emails, including me, I couldnt make judjment calls, and my head just hurt when I tried to troubleshoot anything, then I lost my balance and coordination....and a month later lost my Job after 18 years with NB.
On a positive note, since October my cognitive issues, or at least most of them, have improved some and compared to before starting treatment last march Im allot better.
Before treatment:
Last february I was SEVERELY impaired. I couldnt remember the sentence by the middle so when I spoke it was just babbling.
I couldnt pull up words and said things backwards, listening was nearly an impossible task at times. I repeated myself constantly, not knowing I had said the same thing.
I couldnt read well and if I tried to write it all came out wrong.
Getting my cloths on and sometimes a shower were the extent of my activity. I coulnt step through a doorway that had a floor division, my legs would freeze until I huged the side and pulled my self over the divide.
I would very often freeze when trying to pick something up, I lost most of my voluntary mucsle control and my body twisted and "writhed" 24/7
Now I can walk faily normally, just a little balance problems, my body just has small spasms, bone pain, and some other wierd symptoms.
I can read when Im not too tired and my writing is improving steadily.
I still have a long way to go as my "moth-eaten" brain heals as treatments continue, but im grateful I can look back and see the improvement.
BJK
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've done strange things too.
About 4 weeks ago I found my book I was reading in the freezer.
Last year at this time, I couldn't sit and read a book.
Hang in there. Learn to laugh at yourself.
At least you won't run out of milk this week.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I have to say........ thanks for the chuckles....with no disrespect of what your going through....
.its all to familiar.....thats why I chuckled.....
there is no way I can go into a store with out a list........
i have to make lists for everything.... i'll wake up sit at my desk and write....
shower....get dressed.. ...I need to be able to check things off .....
it makes me feel like I accomplished something during the day.....
that cracked me up........DIUL......
I am so grateful for this website..... I feel bad for all who are on here.....
but I'm sooooooooooooo glad I am not alone..... no one knows what it is like to have this disease........
and it is so hard to explain..........people look at you like your
when my husband asks why i don't want to drive.........its not that i don't WANT to......
its just not safe.........hard to explain why....
love to hear any other strange things anyone has done.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008
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I've gotten lost going to the store. Only been going to the same one for the last 7 years. Oddly enough, I've never gotten lost going home.
I've taken my housework to-do list instead of the grocery list.
For some reason, I keep buying apples, even though they're not on the grocery list. When I get home, I see we already had a lot of apples. Applesauce anyone?
Grocery shopping now takes about 1/2 hour longer than it used to because of all the backtracking to get things I forgot, even with the list. My lyme brain just didn't see them written down.
Back in the day, I used to have a keychain that said "Of all the things I've lost, I miss my mind the most". Never realized just how prophetic it was. At the time, it was funny.
I do miss my mind. I miss being able to follow a conversation, let alone carry one.
I used to be an avid book reader. These days, its difficult to muster up enough concentration to comprehend most posts on message boards.
Forget the scientific ones. They just woosh by without even ruffling my hair.
There's more, but I can't remember it right now.
All that aside, the lyme brain has brought some light into an otherwise dark situation. Laughing at myself seems to be pretty good therapy.
A wise woman recently told me that if it weren't for the lyme brain, all we'd have left is fatigue and pain. She's right. And what fun would that be?
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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i do have a problem at night driving...... I always blame my contacts though...
either way i don't like to drive at night.
reading is such a challeng....i'll read a whole paragraph and have no idea what i just read....
i do better in the am......thats when i read most of the posts.....
hope your all having a good day..... tell me more........I could use some more chuckles......
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Grocery stores? YIKES!
Since being down south.. three trips so far... all of which I wrote a list for and left the list either at home or in my vehicle.
Trips to store-
Trip # 1. After putting everything on counter and it being 3/4 rung up, I realized I had no money and no bank card with me. I'd left my wallet and bank card at home. Had to drive back, get it, and return.
Trip # 2. Went to store and actually bragged to the clerk that I had remembered my card, after that horrible experience the last trip. She then tried to run the card through and it was denied.
I didn't know it had expired 3 days prior. I had no money with me.
Trip # 3. Three weeks later, still no new bank card had arrived. Went to store, wrote a check, and it was rejected. Why?
My drivers license has my full given name on it. My checks have my shortened name. (Like not Debra- but Debbie)
It has been this way since I was in highschool. No one ever said a word, till that day.
I can't believe they couldn't make the "leap" from Debra to Debbie.
After LOTS of arguing and insisting that it was me... and managers coming out of the woodwork to straighten it out.. they finally took it.
In the meantime...
I just ate a salad with ketsup on it instead of salad dressing. Yeah, yulk is right.
But I'll be dipped if I am going back to any grocery stores till that STUPID bank card arrives.
posted
For some reason, I am always sure that we are out of raisins (my husband's breakfast must).
I buy a double pack at COSTCO, return home and find that I have about 8 twin-paks which makes 16 plus the two I just bought.
What can you possible do with 18 jumbo packs of raisins?!
Bet I'll buy some more without thinking it through too... ( My friend doesn't have Lyme and does the same thing with mayonaisse... 9 jars in her cupboard!).
And so it goes,
wiserforit Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
yeah, but isn't your name Lucy? Maybe that was the problem with Debbie.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- worrying about tomorrow takes its strength away from today Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008
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Yeah. I don't go grocery shopping, or anything like that, but in school, I'll often raise my hand, and then when I'm called on I can't remember what I was going to say. That also happens all the time during conversations and when I'm doing my homework.
Occasionally I'll be about to leave the house, and realize that I've forgot something, and by the time I've reached my room, I can't remember what I'm looking for.
-Draba
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thanks for the laughs gang. It might take me two weeks to have a day that I think I might be able to grocery shop. Needless to say, I must start my list as I go along.
I've learned to buy a purse that carries my coupon wallet also. After my grocery list gets so long, I then look at the ad for the week and see if anything on my list matches or if there is possiblity that I might need that item down the road two weeks from now.
Sometimes the ad items are back to regular price before I get to the store. Then I have to look at this weeks ad and start over again.
You should see my coupon system. I think I'm saving money? lol But my husband works in grocery store and sometimes I remember to look at my note to myself and call him and tell him to bring home milk?
Sometimes I remember the note when he gets home from work and today is not the day I can make it through the grocery store. He has to turn around and go to the corner coventience store.
But he can do somethings when it comes to grocery shopping? When I remember to write him a note to buy this, this and this. I do better when I pick up somethings at smaller stores. Like going to fruit & produce market. Or Walgreens after I've read their ad and gathered and listed my coupons and notes to myself.
I think my neighborhood Walgreen's knows I'm not quite right. lol I do believe they talk about me behind my back. I'm so busy looking at my notes & coupons. Sometimes I forgot something on my notes, but I still try to use the coupon on that item and hand them to cashier.
That darn computer system always buzzes me and says "hey, dummy you forgot to buy this item. No buying, no coupon deduction. Idiot." They are used to helping me find stuff right in front of my face. lol
Oh, well it gets me out of the house somedays & doing life.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6444 | From Louisville, Ky | Registered: Jan 2002
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posted
I posted a new thread on this too but I started taking Cymbalta and it totally helped my brain fog, anxiety and depression. A side benefit was that it took the edge off my fatigue too. I highly recommend it. I can read the newspaper and magazines again and was able to go back to work (I have a desk job). I could not focus long enough to read even "fluff" pieces before starting on this blessed drug!!! I am not usually this positive about any drug and I plan on getting off the drug when, hopefully, my Lyme is in full remission, but until then it has given me a large part of my life back!
Posts: 23 | From East Coast | Registered: Feb 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Linda, I too have seen a positive response to cymbalta with 7 days of starting it. But I didn't have a complete clarity with my brain fog. I've been on it since Nov 06.
I still get brain fog, I have always called it "being in the tunnel", not daily, thank God. I still experience whenever I'm put in any situation that requires me to really focus in and concentrate.
Being in the tunnel, can actually happen to me when I'm at a b-ball game, watching as a fan and trying to follow the game.
I tried to increease my dosage of cymbalta slowly. I got up to the recommended dose for pain relief at 120 mg, but that wasn't good at all. Instead of being calmer at that dose, it increased my aggitation or irration sky high.
So I've settled on the 60 mg, once a day. Some days that is just what I need for some of sx. Other days when life happens, I do need to rely on xanax .25 to get me through the moment or event.
Cymbalta, did something for me that was great. It raised my inner thermometer so that I wasn't cold all the time. For years I couldn't get warm. After I started cymbalta and this happened I did some research on why?
Cymbalta contains serotion which is a body producing thing we are suppose to have in our bodies to help regualte body temperature. This is not the type temp that our bodies registers with a thermometer, but the regulation of our core temp.
I've been hypothyroid long before lyme & company happened (?), so naturally I thought my synthroid which helps produce what my dead thyroid won't, just made me sure that I wasn't getting enough synthroid.
Testing my levels every 6 mths at least and them being normal didn't make any sense to me. I didn't know that serotonion is and does many things for the body.
I haven't been cold since, well, I'm cold if I'm out in the elements. But I no longer have to turn thermostat in home up and pile on layers of clothes and socks. My nose isn't cold anymore.
Cymbalta has helped me cope with some really bad life events in the last 1 1/2 yrs. Thank God, I was on it when some parts of my life fell apart.
Otherwise I believe I would of relapsed into lyme & company hell, where I was 5 yrs ago. Today, I still experience sx, but I'm typically not in that place I experienced.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6444 | From Louisville, Ky | Registered: Jan 2002
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I am glad you were able to find some relief as well. For me, it is a huge improvement just to get through a day without crying!
I too still have some "fog" when I am in what I call a "bad" phase. When my feet and hands are killing me, and my other symptoms flare, I get more stupider too! lol
I took the my 2 little ones to pre-school and hour early today without even realizing it! I didn't notice until almost a half-hour after I dropped them off!
Virtual hugs to all -- this is one tough disease.
Linda
Posts: 23 | From East Coast | Registered: Feb 2008
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posted
There was a 4-5 year gap between being "cured/stopping lyme sntibiotics" and my current "idiopathic peripheral sensory neuropathy" First time in hell, I was hypersensitive to everything, sounds, smell, lights, tough, even thinking. Depakote/valproic acid/bipolar disorder was prescribed and within a couple of months I noticed I could stand to exist in the world. Back then, since then and most of all now (lyrica+klonopin=duhhhhh), I write things on the back of my hands. People look at me funny. I say it is my personal organizer, it never gets lost and is never farther away than my pocket! Sharpie markers are the best. They withstand a shower.
Like head injury survivors, find a way to compensate for your deficiency.
I have to write down the times I take lyrica or klonopin, how much and how long the relief lasted. I sat here today and couldnt remember if I had taken 2 or 3 out of the 4 I am allowed...until I looked at my chart. I don'thesitate to use my hand and use a notepad...postit notes are great!!!!
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Christine, Oh yeah. I've had a few scary driving moments.
I've now gotten used to getting lost while heading to familiar places like the grocery store.
Missing turns or heading in the wrong direction seems to be about average too.
I've found it much simpler to go over how to get to where I'm going before even getting into the car. And write it down.
The scariest thing so far was when my brain didn't recognize other vehicles for what they were.
I saw them but my brain just didn't recognize them. At least I realized what was happening and pulled over.
I was so afraid of getting into an accident.
Not only the risk of hurting someone else, but how do you explain something like that to the police and not end up in a safe, secure room somewhere???
Its only happened once and that was enough. Scared the bejeebers outta me!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Driving is scary. I had to shift which shift I work because I refuse to take residents to Dr appointments now. Nobody understands and I feel resented for it.
But its good sometimes if you can find humor in some of the benign lyme moments, like when I made tuna casserole, without the tuna in it. Or when I couldnt find my cell phone for an hour, while I had it glued to my ear! I was actually on the phone with my Mom, complaining that I misplaced the phone again! Gheesh!
..stood there in the shower trying to figure it out......did I wash it?? or didn't I??
then i thought...after what seemed to be a long time.....
duh.. ..just wash it......dosen't hurt to wash it twice!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008
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