Author Topic: Does anyone have eye focus problems/forgetfullness  (Read 14899 times)

Captain Deb

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #15 on: January 09, 2007, 01:41:15 pm »
I've had 4 years of dealing with wonkyhead, so I guess that makes me almost an expert!

(This is loooooong--almost a pamphlet, you may want to hit the "print " button at the bottom and hard-copy it.)

Wonkyhead--that light-headed, heavy-headed, pressure-y, achy, dizzy, fatigued, off-balance, disconnected feeling we AN Survivors get which is triggered by visual/noise/movement stimulation.  Whacks us right in the middle of trying to go about the daily business of living.  Mine is particularly bad and, if not managed, can lead to a "brainwreck" in the blink of an eye.  I've had to be "rescued" in the middle of my errand-running more than once.  I'm coming up on my 4th year of living with wonkyhead and I've developed some personal strategies that have helped me cope and I thought I'd pass them along. We just can't stay home all the time and expect others to do all this crap, well, in early post-treat we can, but there comes a time where we must get up and get out!  Here's what helps me.

You will need:
1. A chalkboard
2. A pen
3. A purse or pocket sized notebook (I like the mini legal pads)
4. A bottle of water that fits in your purse (guys, your backpack, fannypack, or man-purse)
5. A midsized cooler (I have a soft-sided one that lives in my car--always!)
6. One dollar bills
7. Handicap parking tag (really--without directional hearing and the wonkyhead experienced upon emerging from a busy, noisy store--this is essential, at least for me.  I also have spatial disorientation  and this helps me find my car as well. Call your neurologist and he'll fill out the DMV paperwork)

During the week, I write down grocery lists and various crap that needs to get done on the chalkboard.  This is essential, because, having short-term memory loss, I will never remember everything needed all at once.

Plan, plan, plan: The night before my errand day, I use the pen and the notebook to complete the grocery list, and list all the errands--bank, Wally World, hardware store, etc. Then (and this is the important part,) I make myself a map of the errands. Well actually a list of the errands in the order in which they need to be done as to avoid taking left-hand turns without a traffic light.  This is the bane of my existence--left hand turns. Once I have the list of errands, which will probably include the grocery store, I make the grocery list. I try to think this one through and make the list according to the layout of the store. I shop at the same grocery store every time so I stay familiar with the products and their whereabouts! Don't worry about frozen or refrigerated items--that's what the cooler is for. I actually go to the grocery store first sometimes.

So I try to get a good night's sleep and off I go! I stick a bottle of water in my purse--getting dehydrated will set off the wonkyhead quicker than anything I know, as will getting hungry and having my blood-sugar drop--so a snack goes in the purse as well.

In the grocery store, I shop with a pen in my hand and my list in the other (again, when wonkyhead sets in, short-term memory takes a hike!) so if I think of something I need while in the produce dept, it's written down by the time I get to the aisle where it is. I also always get a cart, even if I'm getting a few things--it gives me some stability.  As I get stuff, I cross it off the list. I hate backtracking in the grocery store!

At the check out, if I have more than I can carry, and they ask if I want help out with my bags, I say "yes, yes, yes!" (after selecting the line with the cutest bag-boy!--we're in a college town so there's no shortage of these) No macho-girl here anymore--I want help. I always give him or her a tip of $2-3. By then my head is usually spinning pretty badly and it is totally worth it. Again, no directional hearing  and wonkyhead make me a hazardous pedestrian.

Once I'm safely back in the car, I give myself a few minutes to "de-stimulate" before I head off to the next destination. I just close my eyes for a minute or two--no music, a sip of water, just trying to relax. As I head out to the next errand, I try not to let other drivers bother me, particularly the ones behind me waiting for me to turn (right turn) Let'em wait and let 'em honk!

When I was first getting back to doing stuff like this, I learned to set limits for myself--I'd do one errand first, and the next outing I'd do two. I'm now up to four, and five is a real stretch. I also give myself permission to come home, an errand or two not done, if I feel like I'm not up to it. Superwoman is now officially in retirement.

Not all of us have to be so anal about all this stuff, but there are those of us who still struggle with wonkyhead and headaches that start out as wonkyhead. It is quite frightening to be miles from home, in your car, by yourself, or even worse, with small children, and have a "meltdown." These are some strategies that work for the "new me."  I hope it is helpful. Perhaps you could share what works for the "new you," too!

Huggles,
Captain Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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ppearl214

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #16 on: January 09, 2007, 03:09:22 pm »
Deb,

Didn't have to hit the "print" key... you just rawk!  :-*  Amazing how you have altered your "norm" of life to now, post-AN surgery, and the strategies you have laid out for yourself that are tried and true and work for you.  Like you (and in light of my Chiari 1 as well), that wonky head and those nasty headaches/migraines can be overwhelming, especially when "away from home". Even if I drive down the street to the store for 1-2 items with one of my migraines (even if Chiari caused), it can be so overwhelming, I'm grabbing my head in the store... I just tell everyone I'm trying to flatten my hair from big hair.

I commend you, for your strength, courage and resolve! I know it's taken a lot of time and energy and thought and pain to put this plan together for yourself... and Deb, sounds like a fab plan! :) Great job!!!!

huggles all around for you!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #17 on: January 09, 2007, 03:13:22 pm »
Phyll,


 :-*

CD
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

lmurray69

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #18 on: January 09, 2007, 07:26:03 pm »
Thanks Capt DEb. I have the wonky list I  printed it when you first released it..thanks Linda
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

redgrl

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #19 on: January 12, 2007, 02:20:22 pm »
This is a great list Cap Deb. I just recently started making lists  and things or i totaly forgot. Maybe i was just in denial and thought i would remember if i stood there and thought about it long enough. LOL!  :)
4 cm left side AN. Translab Sept 20th 06 at virginia mason w/Dr. Backous & Dr. Nussbaum. Second surgery Oct 15th 06 to repair CFS leak.

Lorenzo

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #20 on: January 12, 2007, 02:29:35 pm »
I forget the list, regularly.  :)

Fantastic list and startegy! Birlliant! Talk about being organised, WOW! I'm full of admiration.

Ciao, Lorenzo

Sue

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Re: Does anyone have eye focus problems/forgetfullness
« Reply #21 on: January 23, 2007, 02:15:26 am »
Well, I make the list and then forget to take the list with me! Ha

Anyway, Deborah Dear, I think your "list" should be written up in the ANA newsletter. It's wonderful.  Great tips.  I don't think my experiences with "wonky head" are as bad as you have, but I do have something going on.  It's frustrating and it's so hard for me to describe it because it's very subtle. It's just enough for things to not feel "right".  I guess it is my balance nerve working overtime. 

Thanks for posting your survival tips.  Yes, you are a Rawk Star. Of the highest magnitude. ;D

Sue in Vancouver
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
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