Re: Two questions about being a spazz

[Guest guest]

On Apr 26, 2006, at 6:14 PM, Capel wrote:

> I know that putting a list on the fridge will not work. I know that

> putting a list on the file cabinet next to the computer will not

> work. Nor

> will putting a list on the bathroom mirror (or probably the middle

> of my

> forehead either). The only thing I can think of that might work is

> some

> kind of pill-cubicle thingie that can be hung around the neck.

> Something

> with compartments that I can string around my neck. Does anyone

> know about

> anything like this? Is such a thing made?

I'd never, ever make it without my little seven-day pill-cubicle

boxes. Most drug stores sell small ones; you can find bigger ones at

health-food stores.

I have six big ones for my morning drugs; and six smaller ones for

evening drugs. That way, I only have to get out my supplement bottles

once every six weeks. I spread out on the bed (usually with the TV

on), and fill 'em up. If you don't think you can remember what to put

into them, keep a written list in the big box, shelf, or drawer where

you store your supplement bottles.

As for where to store them: the main thing is to experiment and find

the place that's most conducive to getting them taken. I keep a box

of AM supplements in the bathroom, so they're right there next to the

faucet and glass when I go to brush my teeth. The PM supplements are

by my bed, because I find I'm more likely to take them when I'm

really wiped out at the end of the day if they're there. If you take

something like probiotics that have to be refrigerated, then of

course the boxes should live in the fridge.

I've also got a bunch of non-pill stuff to take (almost all of it in

the evening). For this, I found a cute lunch-box style tin container

with cowgirls painted all over it. That's got all the various gels,

creams, ProBoost powder, paraphernalia for my injections, container

for the bite guard, etc. I keep it right by my bedside, where I can

grab it and do all that stuff just before I turn in.

The great part of this is that it makes it easy to take all this on

the road, too. I just grab a box each of night and day drugs and the

cowgirl box, pack up my CPAP, and go.

> (2) The other question I have is related to this, and it also

> explains why

> " lists " don't usually work for me. I'm wondering if anyone else has

> strange memory things happening that are different than " short-term

> memory

> loss. " I'm not sure what to call this -- perhaps " holes " in the

> memory? I

> think it explains, though, why I can be staring right at a list

> itself and

> still not know it's there. It doesn't " register " for what it is.

> I want

> to say " the cognitive connection is not made, " but I'm not sure if

> that's

> accurate to say.

No, no, I know this feeling. I don't have it as often as I used to,

but yeah, it's part of the deal for a lot of us.

Mine tends to be auditory. I'll realize someone has just told me

something, but I don't remember a single word of it -- just an echo

of the words in the air, but without any meaning attached. My family

has gotten really used to me asking, " Could you say that again, please? "

If it helps any: You're not crazy. You're just a PWC.

Sara

[Guest guest]

Thanks, Sara. You've given me several good ideas. Also clues about

where to pinpoint my areas of confusion and how to deal with them.

(I guess part of the name of the game is " compensation.) I

appreciate the good ideas and the help very much.

> I'd never, ever make it without my little seven-day pill-cubicle

> boxes. Most drug stores sell small ones; you can find bigger ones

at

> health-food stores.

>

> I have six big ones for my morning drugs; and six smaller ones for

> evening drugs. That way, I only have to get out my supplement

bottles

> once every six weeks. I spread out on the bed (usually with the TV

> on), and fill 'em up. If you don't think you can remember what to

put

> into them, keep a written list in the big box, shelf, or drawer

where

> you store your supplement bottles.

>

> As for where to store them: the main thing is to experiment and

find

> the place that's most conducive to getting them taken. I keep a

box

> of AM supplements in the bathroom, so they're right there next to

the

> faucet and glass when I go to brush my teeth. The PM supplements

are

> by my bed, because I find I'm more likely to take them when I'm

> really wiped out at the end of the day if they're there. If you

take

> something like probiotics that have to be refrigerated, then of

> course the boxes should live in the fridge.

>

> I've also got a bunch of non-pill stuff to take (almost all of it

in

> the evening). For this, I found a cute lunch-box style tin

container

> with cowgirls painted all over it. That's got all the various

gels,

> creams, ProBoost powder, paraphernalia for my injections,

container

> for the bite guard, etc. I keep it right by my bedside, where I

can

> grab it and do all that stuff just before I turn in.

>

> The great part of this is that it makes it easy to take all this

on

> the road, too. I just grab a box each of night and day drugs and

the

> cowgirl box, pack up my CPAP, and go.

>

> No, no, I know this feeling. I don't have it as often as I used

to,

> but yeah, it's part of the deal for a lot of us.

>

> Mine tends to be auditory. I'll realize someone has just told me

> something, but I don't remember a single word of it -- just an

echo

> of the words in the air, but without any meaning attached. My

family

> has gotten really used to me asking, " Could you say that again,

please? "

>

> If it helps any: You're not crazy. You're just a PWC.

>

> Sara

>

[Guest guest]

The only way I can possibly manage to take all of my pills, and

actually take the right ones (and not mix them up and make myself feel

worse) is to write the name of the pill on the top of each bottle, and

double check when I refill so I actually grab the correct new bottle.

I also chart the pills and check them off as I put them in my pill

bowl - just a little bowl for my AM pills. Since there are too many

pills to possibley take at once, I leave them on the kitchen counter,

covered with saran wrap, lest some dreaded fly land on them and give

me some disease worse than CFIDS. That way I see the pills when I walk

into the kitchen. I also dole out my night time pills, and those I

usually take at once, with yogurt and water, and hope they don't get

stuck in my throat.

As for finding your pot, I could see myself doing that. I think I

spend half of my time looking for thngs. I have completely lost the

ability to organize and am too tired to worry about messes here and

there. I also can look for something and look right at it and not see

it. It would be so nice to have a brain!

Michele G

>

> > I know that putting a list on the fridge will not work. I know that

> > putting a list on the file cabinet next to the computer will not

> > work. Nor

> > will putting a list on the bathroom mirror (or probably the middle

> > of my

> > forehead either). The only thing I can think of that might work is

> > some

> > kind of pill-cubicle thingie that can be hung around the neck.

> > Something

> > with compartments that I can string around my neck. Does anyone

> > know about

> > anything like this? Is such a thing made?

>

> I'd never, ever make it without my little seven-day pill-cubicle

> boxes. Most drug stores sell small ones; you can find bigger ones at

> health-food stores.

>

> I have six big ones for my morning drugs; and six smaller ones for

> evening drugs. That way, I only have to get out my supplement bottles

> once every six weeks. I spread out on the bed (usually with the TV

> on), and fill 'em up. If you don't think you can remember what to put

> into them, keep a written list in the big box, shelf, or drawer where

> you store your supplement bottles.

>

> As for where to store them: the main thing is to experiment and find

> the place that's most conducive to getting them taken. I keep a box

> of AM supplements in the bathroom, so they're right there next to the

> faucet and glass when I go to brush my teeth. The PM supplements are

> by my bed, because I find I'm more likely to take them when I'm

> really wiped out at the end of the day if they're there. If you take

> something like probiotics that have to be refrigerated, then of

> course the boxes should live in the fridge.

>

> I've also got a bunch of non-pill stuff to take (almost all of it in

> the evening). For this, I found a cute lunch-box style tin container

> with cowgirls painted all over it. That's got all the various gels,

> creams, ProBoost powder, paraphernalia for my injections, container

> for the bite guard, etc. I keep it right by my bedside, where I can

> grab it and do all that stuff just before I turn in.

>

> The great part of this is that it makes it easy to take all this on

> the road, too. I just grab a box each of night and day drugs and the

> cowgirl box, pack up my CPAP, and go.

>

>

> > (2) The other question I have is related to this, and it also

> > explains why

> > " lists " don't usually work for me. I'm wondering if anyone else has

> > strange memory things happening that are different than " short-term

> > memory

> > loss. " I'm not sure what to call this -- perhaps " holes " in the

> > memory? I

> > think it explains, though, why I can be staring right at a list

> > itself and

> > still not know it's there. It doesn't " register " for what it is.

> > I want

> > to say " the cognitive connection is not made, " but I'm not sure if

> > that's

> > accurate to say.

>

> No, no, I know this feeling. I don't have it as often as I used to,

> but yeah, it's part of the deal for a lot of us.

>

> Mine tends to be auditory. I'll realize someone has just told me

> something, but I don't remember a single word of it -- just an echo

> of the words in the air, but without any meaning attached. My family

> has gotten really used to me asking, " Could you say that again, please? "

>

> If it helps any: You're not crazy. You're just a PWC.

>

> Sara

>

[Guest guest]

The only way I can possibly manage to take all of my pills, and

actually take the right ones (and not mix them up and make myself feel

worse) is to write the name of the pill on the top of each bottle, and

double check when I refill so I actually grab the correct new bottle.

I also chart the pills and check them off as I put them in my pill

bowl - just a little bowl for my AM pills. Since there are too many

pills to possibley take at once, I leave them on the kitchen counter,

covered with saran wrap, lest some dreaded fly land on them and give

me some disease worse than CFIDS. That way I see the pills when I walk

into the kitchen. I also dole out my night time pills, and those I

usually take at once, with yogurt and water, and hope they don't get

stuck in my throat.

As for finding your pot, I could see myself doing that. I think I

spend half of my time looking for thngs. I have completely lost the

ability to organize and am too tired to worry about messes here and

there. I also can look for something and look right at it and not see

it. It would be so nice to have a brain!

Michele G

>

> > I know that putting a list on the fridge will not work. I know that

> > putting a list on the file cabinet next to the computer will not

> > work. Nor

> > will putting a list on the bathroom mirror (or probably the middle

> > of my

> > forehead either). The only thing I can think of that might work is

> > some

> > kind of pill-cubicle thingie that can be hung around the neck.

> > Something

> > with compartments that I can string around my neck. Does anyone

> > know about

> > anything like this? Is such a thing made?

>

> I'd never, ever make it without my little seven-day pill-cubicle

> boxes. Most drug stores sell small ones; you can find bigger ones at

> health-food stores.

>

> I have six big ones for my morning drugs; and six smaller ones for

> evening drugs. That way, I only have to get out my supplement bottles

> once every six weeks. I spread out on the bed (usually with the TV

> on), and fill 'em up. If you don't think you can remember what to put

> into them, keep a written list in the big box, shelf, or drawer where

> you store your supplement bottles.

>

> As for where to store them: the main thing is to experiment and find

> the place that's most conducive to getting them taken. I keep a box

> of AM supplements in the bathroom, so they're right there next to the

> faucet and glass when I go to brush my teeth. The PM supplements are

> by my bed, because I find I'm more likely to take them when I'm

> really wiped out at the end of the day if they're there. If you take

> something like probiotics that have to be refrigerated, then of

> course the boxes should live in the fridge.

>

> I've also got a bunch of non-pill stuff to take (almost all of it in

> the evening). For this, I found a cute lunch-box style tin container

> with cowgirls painted all over it. That's got all the various gels,

> creams, ProBoost powder, paraphernalia for my injections, container

> for the bite guard, etc. I keep it right by my bedside, where I can

> grab it and do all that stuff just before I turn in.

>

> The great part of this is that it makes it easy to take all this on

> the road, too. I just grab a box each of night and day drugs and the

> cowgirl box, pack up my CPAP, and go.

>

>

> > (2) The other question I have is related to this, and it also

> > explains why

> > " lists " don't usually work for me. I'm wondering if anyone else has

> > strange memory things happening that are different than " short-term

> > memory

> > loss. " I'm not sure what to call this -- perhaps " holes " in the

> > memory? I

> > think it explains, though, why I can be staring right at a list

> > itself and

> > still not know it's there. It doesn't " register " for what it is.

> > I want

> > to say " the cognitive connection is not made, " but I'm not sure if

> > that's

> > accurate to say.

>

> No, no, I know this feeling. I don't have it as often as I used to,

> but yeah, it's part of the deal for a lot of us.

>

> Mine tends to be auditory. I'll realize someone has just told me

> something, but I don't remember a single word of it -- just an echo

> of the words in the air, but without any meaning attached. My family

> has gotten really used to me asking, " Could you say that again, please? "

>

> If it helps any: You're not crazy. You're just a PWC.

>

> Sara

>

[Guest guest]

People think I am crazy when they see my supplement bottles on kitchen

counter.

Nil

Re: Two questions about being a spazz

> The only way I can possibly manage to take all of my pills, and

> actually take the right ones (and not mix them up and make myself feel

> worse) is to write the name of the pill on the top of each bottle, and

> double check when I refill so I actually grab the correct new bottle.

> I also chart the pills and check them off as I put them in my pill

> bowl - just a little bowl for my AM pills. Since there are too many

> pills to possibley take at once, I leave them on the kitchen counter,

>

[Guest guest]

Hi, ,

I know you've gotten some good feedback on your issues.

I can totally relate to this also.

1. What I did to help remember to take all these supplements was

to line the bottles up on the kitchen counter and just go down the

row picking up each bottle. As much as possible I separate the am

and pm bottles in sections. Then at each mealtime I actually pick up

each bottle. It seems the physical action of doing this bypasses my

memory " hole " .

My nutritionist helped by having the compounding pharmacy put

many of the supplements together into a powder - and they determined

how many teaspoonsful were needed at each meal. So this lessened

how many bottles I had to open and remember to take.

Another thing that helped me was to open the capsules and pour

them on my food such as rice cereal or a potato or whatever. Some

didn't taste very good but, I could swallow them in one or two

bites, then kill the taste with the rest of the food.

2. I just went through the same thing. I searched for three days

to find the directions for taking a parasite test - couldn't find it

anywhere - in stacks of papers, on top of furniture, etc. Found it

last night hanging on the wall not a foot away from the computer

(where I thought I would be sure to see it)!!! Probably about half

my day is spent looking for things. I try to consciously move more

slowly and with awareness = it doesn't work. In the early days I

would find things in the strangest places - like the butter in the

oven!!

I feel there is a disconnect or gap between my intake of

sound or sight and the part of the brain that responds. Is this a

problem with the nerve synapses? I wonder.

>

> I know this is idiotic of me, but I have such faith in you folks,

I'm going

> to ask anyway...

>

> (1) I'm trying to supplement periodically during " waking hours "

(hah!)

> with different things to try to make myself come alive again.

It's not

> much -- fish oil, cod liver oil, licorice extract, oil of oregano,

probably

> a couple other things I already forgot (see?).

>

> The trouble is...I can't ever remember to take all my stuff. I

always get

> to the end of the day and then the " Aha " light goes on over my

head, and

> then I remember something that I forgot all that previous day.

>

> I know that putting a list on the fridge will not work. I know

that

> putting a list on the file cabinet next to the computer will not

work. Nor

> will putting a list on the bathroom mirror (or probably the middle

of my

> forehead either). The only thing I can think of that might work

is some

> kind of pill-cubicle thingie that can be hung around the neck.

Something

> with compartments that I can string around my neck. Does anyone

know about

> anything like this? Is such a thing made?

>

> (2) The other question I have is related to this, and it also

explains why

> " lists " don't usually work for me. I'm wondering if anyone else

has

> strange memory things happening that are different than " short-

term memory

> loss. " I'm not sure what to call this -- perhaps " holes " in the

memory? I

> think it explains, though, why I can be staring right at a list

itself and

> still not know it's there. It doesn't " register " for what it is.

I want

> to say " the cognitive connection is not made, " but I'm not sure if

that's

> accurate to say.

>

> Here's my most recent example of this (other than lists): I've

spent the

> last four or five days looking for my tall stock pot. This is a

stainless

> steel pot with a lid, and altogether, the thing is probably around

12

> inches tall. This is not a pot that would fit into any and every

cabinet

> in the kitchen, given that some of them have shelves in them.

First, I

> checked all of what I thought were the obvious places in the

kitchen -- the

> tall cabinets that would accommodate the height of this pot. Not

> there. Then I checked every single room in the house, plus the

garage,

> thinking " oh, well, I threw something into the pot for temporary

holding

> and I just don't know where I put it. " Not anywhere else in the

house or

> the garage. Where did I finally find the blasted stock pot? In

the

> lazy-susan cabinet in the corner of the kitchen, where I'd put it

probably

> six months or a year ago. Along with other tall kitchen things

that

> wouldn't fit elsewhere.

>

> However, in my search for the tall stock pot, it never occurred to

me that

> I wasn't finding my **other** tall kitchen stuff either. Nor did

the

> lazy-susan corner cabinet in the kitchen jump out at me all the

times I

> searched the kitchen. It was like it was never there, because I

truly

> never saw it.

>

> Does anyone have any explanation for this kind of thing, other

than

> possibly my own creeping insanity? Or, I guess, that too, if

that's what

> it comes down to....

>

>

> still in Champaign IL

>

[Guest guest]

<< As for finding your pot, I could see myself doing that. I think I

spend half of my time looking for thngs. I have completely lost the

ability to organize and am too tired to worry about messes here and

there. I also can look for something and look right at it and not see

it. It would be so nice to have a brain! >>

Hi Michele G,

One more question: What happens when your " here " meets up with

your " there " and there's no more space in between (like in my casa)!

I like your bowl idea with the Saran wrap as a fly guard against

further terrors, too! Thank you.

[Guest guest]

Thanks . I can tell that part of my problem is that I've spent a

lot of years taking care of other living, breathing entities and

little time taking care of me. I apppreciate your (and everyone's)

humor about this kind of problem.

>

> Hi, ,

> I know you've gotten some good feedback on your issues.

> I can totally relate to this also.

>

> 1. What I did to help remember to take all these supplements was

> to line the bottles up on the kitchen counter and just go down the

> row picking up each bottle. As much as possible I separate the am

> and pm bottles in sections. Then at each mealtime I actually pick

up

> each bottle. It seems the physical action of doing this bypasses

my

> memory " hole " .

> My nutritionist helped by having the compounding pharmacy put

> many of the supplements together into a powder - and they

determined

> how many teaspoonsful were needed at each meal. So this lessened

> how many bottles I had to open and remember to take.

> Another thing that helped me was to open the capsules and pour

> them on my food such as rice cereal or a potato or whatever. Some

> didn't taste very good but, I could swallow them in one or two

> bites, then kill the taste with the rest of the food.

>

> 2. I just went through the same thing. I searched for three

days

> to find the directions for taking a parasite test - couldn't find

it

> anywhere - in stacks of papers, on top of furniture, etc. Found it

> last night hanging on the wall not a foot away from the computer

> (where I thought I would be sure to see it)!!! Probably about half

> my day is spent looking for things. I try to consciously move more

> slowly and with awareness = it doesn't work. In the early days I

> would find things in the strangest places - like the butter in the

> oven!!

> I feel there is a disconnect or gap between my intake of

> sound or sight and the part of the brain that responds. Is this a

> problem with the nerve synapses? I wonder.

>

>

>