OK--It's late and I "should" be in bed preparing for a trip tomorrow but a 4 hour nap superceeded any nighttime fatique.
Just got off medical questions-trying to read and absorb a very interesting and ground-breaking topic.
I cannot stand this inability to read and understand anymore. I am so frustrated I broke down and cried...and cried.
I know that it's Lyme-brain-but knowing it just doesn't help. I WANT MY BRAIN BACK!
I am also feeling helpless and hopeless for the first time-"shouldn't" be, either as I have something to look forward to tomorrow.
I can't really describe how I am feeling-it's like total devestation. How can one be aware of all the new research and hopeful discoveries when one can't even comprehend the words on the page. ?
I feel like one of The Left Behind book series. Am definitely on my pity pot tonight-beginning another herx. after 4-actually 4- pretty good days.
All the treatments-all the medicines-all the pain and sufferring-I am truly ready to chuck it all and go strictly alternative with every known therapy ever devised.
Is my body or mind going to totally break down first? I am too old and too damned tired of this whole thing.
Never one to be a quitter-MS degree-BIG DEAL- Career trashed. But The critters don't seem to quit.
Just venting-sorry to be negative-just what to do to save my sanity?
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Maybe my brain eloped with your brain and they're off in Belize somewhere having a fine old time. I would ditch my body right now if I were me.
Bad days are harder after the not-so-bad days, huh.
Sometimes when I have something good to look forward, I actually feel psychologically worse because I'm so worried my 'good' day is going to turn out badly....
Here's a rule to live by: Don't try to make decisions when you're herxing, especially about treatment, and especially if you're having good-day windows. Think about this stuff when your head is clearer.
So anyway. The way I manage is...I decide to worry about it tomorrow. Because your brain actually will come back. Several years ago, driving home from work, I couldn't remember where I was, what state I was in (we'd moved 2 years earlier), or what year it was. I had to pull over to the side of the road for a while. I decided to keep going in the direction the car was pointed, and I made it home. What a horrible trip.
So for now, just keep going in the direction you're pointed. It's certainly worthwhile to take a good look at the other therapies, but wait until you're a little clearer.
And don't worry about not understanding the Dr. Marshall post. I think about 4 people actually do. Maybe someone will kindly take pity and do one post with a summary of the protocol and a list of the concerns....There will be updates, anyway.
And until then,on your next good day just print it out, and highlight the main points and make some notes to yourself. And talk to your doc...
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Ooooh! I understand. I thought I wasn't doing so bad in the cognitive department till I had neuropsych testing, where I had some results consistant with brain injury, in the severely impaired catagory.
My IQ is still high, so I've figured out how to cover.
I've learned now that I just have to read things repeatedly. Sometimes repeatedly repeatedly. And without spellcheck, I can't spell.
I know it is hard, but the easier you can be on yourself, the better everything will work. Don't push. When I can't remember a word, I've learned to do some pretty expressive sign language. Ususally if I leave it alone, it comes back later.
Just try to keep doing things that INTEREST you. That keeps the brain cells improving. Let go of the things that don't work, as much as possible.
It also can get better. Some days are just harder than others. Hang on, a better one is surely coming your way.
posted
I'm sorry I didn't see your post until after you got back from your trip. I hope you are feeling better! I'm having a night (er... make that morning) like you had. I find the best way to forget about my blues is to get on lymenet and deep fry my brain with facts... then I get so frustrated with that... sleep looks good! By the way, when I get to the point of frustration... I print out what I'm reading and try again later!
Posts: 62 | From Middletown, Rhode Island | Registered: Feb 2004
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posted
I just wanted to let you know that you are not alone again. My brain was gone for a long time and is slowly starting to come back. I have good days and bad days still and often can't spell and have trouble with speach. I feel like I used to be intelligent and hope it will return. It helps me to pace myself and be REALLY go easy on myself because otherwise I would be a disaster. Take care of yourself and be patient. From what I am reading, cognitive abilities are restored in time but I believe that we all are impatient. It is a very difficult struggle and I wish you well! Amanda
Posts: 80 | From Salt Lake City, Utah USA | Registered: Apr 2004
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Chocolat, Love the s/n. My favorite food group!
I'm just catching up from a few days and saw your post. It is soooo frustrating to have a perfectly good brain that doesn't work up to capacity. I call myself 'the scarecrow' - you know, 'if I only had a brain'. The stuff I do or don't do, just boggles whatever mind I have left. I wonder some days how could I have possibly evolved into such a dingbat????
I was a college prof and used to reading all sorts of juicy technical stuff. Now I've found myself reading Nancy Drew because the plot isn't too complicated !!!! I love to read, but it's just too much work and I get too confused.
For now, I'm in movie mode. I read a little (force myself, actually), play word games (try 'bookworm' at yahoo). It's frustrating at times, but I talk to myself a lot. I try to remind myself that this is a darn disease.
Don't kick yourself too hard over not being able to read some of the material posted here. You have to remember that everyone's cognitive abilities are different. Some folks are hit with more neuro stuff while others still have their wits about them. I get lost in many of the articles, so I skim and try to get the gist. The benicar info is far too technical for my pea brain to handle right now and that's ok. Maybe if the posters drew pictures I might get it LOL!!!! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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