Re: showers

[Guest guest]

Debbie,

I do understand, I think. I know when I'm having a really bad day, that all I want to do is stay in my robe, and sit on the couch, or lay on it or go back to bed.

I think what you're saying is that even to get up and shower-- is hard. The effort alone is too much. Yeah, we need to do it-- but you are too damn tired. Am I right with this?

I do know I'm fortunate, in that I've been able to get this monster under some assemblance of control.

For me, the biggest issue is that I know that the brain stuff with the cognitive skills is progressing slowly. I had a pain support group meeting that I was to go to last week, and I actually drove the 30 minutes down the hill to Chico, ended up at the grocery store, picked up a couple of things- and started back up the hill. About half way home, I realized that I hadn't gone down to go shopping, i was to go to this meeting. Well, too late-- I wasn't about to turn around and go back down the hill.

So my coping has to be eating way too much icecream. Way too much!

I am at a point where I'm saying that I've researched, I've tried and taken most of the meds, and yeah- I'm doing better than I was-- but I want more. So, instead of trying to do what I know i need to do-- eat right, take my walk, do my armchair stretchs-- I'm eating another bowl of ice cream.

Now this hurts because my body no longer tolerates milk products-- they cause more arthritic pain.

It also screws with my blood sugar-- which when it's high-- I have more neuropathy.

I also fills me up so I don't drink as much fluid as I should-- and so I hurt again in the joints.

Yeah, I know that the MSM helps ALOT-- (take it with juice or add it to water and a touch of sweetner) and that if I do watch my diet that I feel better. Much better.

So why the hell am I fighting this simple issue. I'm bored. That's why. I'm having a hell of a time looking for answers. I figure that if I preach that we should be eating right-- then I HAVE to live up to my "talk." and when I don't "walk" my "talk"-- then I've failed. I've failed myself. And I've failed those who love me.

so that's where I'm at-- and I don't like it either. But if i totally give up-- I might as well join those who try flying "lookout point" on the Skyway. (20 people a year use this to commit suicide). Now, there are so many cars over the edge-- that you can damn near drive down to the bottom of the canyon 2000 foot below on the rooftops of the cars. And I am "contracted" not to do that. So- no worry-- but we gotta keep getting up- and doing what we can.

Thats my story,

Tracie

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[Guest guest]

Debbie,

I'm right where you are girl!!! It's so hard because I know if I use

my energy to take a full shower and get dressed, there won't be much

more that I can do.

It's so hard as I've always been such a prissy girl......I used to

shower, do my hair & make-up just to clean house, because I always felt

better.

It's hard to have to even " think " about taking a shower as it was such

a natural thing to do every morning, but now I probably only take a

full shower 2-3 times a week. I also get really short of breathe

taking a shower.....it's pathetic, I feel like I'm 90.

A really good friend of mine sent me the link to this story

called " Spoons " and it explains PERFECTLY how I feel. I've given this

to others to help them understand because it's such a good

description. I hope it helps to lift your spirits and remind you to

focus on what you CAN do vs. CAN'T do everyday......if only I could

take my own advise.....

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

Hang in there girl! You're not alone!!

In case you can't access the link, here's the article.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very

late and we were eating French fries with gravy. Like normal girls our

age, we spent a lot of time in the diner while in college, and most of

the time we spent talking about boys, music or trivial things, that

seemed very important at the time. We never got serious about anything

in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did,

she watched me with an awkward kind of stare, instead of continuing the

conversation. She then asked me out of the blue what it felt like to

have Lupus and be sick. I was shocked not only because she asked the

random question, but also because I assumed she knew all there was to

know about Lupus. She came to doctors with me, she saw me walk with a

cane, and throw up in the bathroom. She had seen me cry in pain, what

else was there to know?

I started to ramble on about pills, and aches and pains, but she kept

pursuing, and didn't seem satisfied with my answers. I was a little

surprised as being my roommate in college and friend for years; I

thought she already knew the medical definition of Lupus. Then she

looked at me with a face every sick person knows well, the face of pure

curiosity about something no one healthy can truly understand. She

asked what it felt like, not physically, but what it felt like to be

me, to be sick.

As I tried to gain my composure, I glanced around the table for help or

guidance, or at least stall for time to think. I was trying to find the

right words. How do I answer a question I never was able to answer for

myself? How do I explain every detail of every day being effected, and

give the emotions a sick person goes through with clarity. I could have

given up, cracked a joke like I usually do, and changed the subject,

but I remember thinking if I don't try to explain this, how could I

ever expect her to understand. If I can't explain this to my best

friend, how could I explain my world to anyone else? I had to at least

try.

At that moment, the spoon theory was born. I quickly grabbed every

spoon on the table; hell I grabbed spoons off of the other tables. I

looked at her in the eyes and said " Here you go, you have Lupus " . She

looked at me slightly confused, as anyone would when they are being

handed a bouquet of spoons. The cold metal spoons clanked in my hands,

as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is

having to make choices or to consciously think about things when the

rest of the world doesn't have to. The healthy have the luxury of a

life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and

energy to do whatever they desire, especially young people. For the

most part, they do not need to worry about the effects of their

actions. So for my explanation, I used spoons to convey this point. I

wanted something for her to actually hold, for me to then take away,

since most people who get sick feel a " loss " of a life they once knew.

If I was in control of taking away the spoons, then she would know what

it feels like to have someone or something else, in this case Lupus,

being in control.

She grabbed the spoons with excitement. She didn't understand what I

was doing, but she is always up for a good time, so I guess she thought

I was cracking a joke of some kind like I usually do when talking about

touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that

when you are healthy you expect to have a never-ending supply

of " spoons " . But when you have to now plan your day, you need to know

exactly how many " spoons " you are starting with. It doesn't guarantee

that you might not lose some along the way, but at least it helps to

know where you are starting. She counted out 12 spoons. She laughed and

said she wanted more. I said no, and I knew right away that this little

game would work, when she looked disappointed, and we hadn't even

started yet. I've wanted more " spoons " for years and haven't found a

way yet to get more, why should she? I also told her to always be

conscious of how many she had, and not to drop them because she can

never forget she has Lupus.

I asked her to list off the tasks of her day, including the most

simple. As, she rattled off daily chores, or just fun things to do; I

explained how each one would cost her a spoon. When she jumped right

into getting ready for work as her first task of the morning, I cut her

off and took away a spoon. I practically jumped down her throat. I

said " No! You don't just get up. You have to crack open your eyes, and

then realize you are late. You didn't sleep well the night before. You

have to crawl out of bed, and then you have to make your self something

to eat before you can do anything else, because if you don't, you can't

take your medicine, and if you don't take your medicine you might as

well give up all your spoons for today and tomorrow too. " I quickly

took away a spoon and she realized she hasn't even gotten dressed yet.

Showering cost her a spoon, just for washing her hair and shaving her

legs. Reaching high and low that early in the morning could actually

cost more than one spoon, but I figured I would give her a break; I

didn't want to scare her right away. Getting dressed was worth another

spoon. I stopped her and broke down every task to show her how every

little detail needs to be thought about. You cannot simply just throw

clothes on when you are sick. I explained that I have to see what

clothes I can physically put on, if my hands hurt that day buttons are

out of the question. If I have bruises that day, I need to wear long

sleeves, and if I have a fever I need a sweater to stay warm and so on.

If my hair is falling out I need to spend more time to look

presentable, and then you need to factor in another 5 minutes for

feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn't

even get to work, and she was left with 6 spoons. I then explained to

her that she needed to choose the rest of her day wisely, since when

your " spoons " are gone, they are gone. Sometimes you can borrow against

tomorrow's " spoons " , but just think how hard tomorrow will be with

less " spoons " . I also needed to explain that a person who is sick

always lives with the looming thought that tomorrow may be the day that

a cold comes, or an infection, or any number of things that could be

very dangerous. So you do not want to run low on " spoons " , because you

never know when you truly will need them. I didn't want to depress her,

but I needed to be realistic, and unfortunately being prepared for the

worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that

skipping lunch would cost her a spoon, as well as standing on a train,

or even typing at her computer too long. She was forced to make choices

and think about things differently. Hypothetically, she had to choose

not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I

summarized that she had to eat dinner but she only had one spoon left.

If she cooked, she wouldn't have enough energy to clean the pots. If

she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn't even bother to add into this game,

that she was so nauseous, that cooking was probably out of the question

anyway. So she decided to make soup, it was easy. I then said it is

only 7pm, you have the rest of the night but maybe end up with one

spoon, so you can do something fun, or clean your apartment, or do

chores, but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was

getting through to her. I didn't want my friend to be upset, but at the

same time I was happy to think finally maybe someone understood me a

little bit. She had tears in her eyes and asked quietly " , How

do you do it? Do you really do this everyday? " I explained that some

days were worse then others; some days I have more spoons then most.

But I can never make it go away and I can't forget about it, I always

have to think about it. I handed her a spoon I had been holding in

reserve. I said simply, " I have learned to live life with an extra

spoon in my pocket, in reserve. You need to always be prepared "

Its hard, the hardest thing I ever had to learn is to slow down, and

not do everything. I fight this to this day. I hate feeling left out,

having to choose to stay home, or to not get things done that I want

to. I wanted her to feel that frustration. I wanted her to understand,

that everything everyone else does comes so easy, but for me it is one

hundred little jobs in one. I need to think about the weather, my

temperature that day, and the whole day's plans before I can attack any

one given thing. When other people can simply do things, I have to

attack it and make a plan like I am strategizing a war. It is in that

lifestyle, the difference between being sick and healthy. It is the

beautiful ability to not think and just do. I miss that freedom. I miss

never having to count " spoons " .

After we were emotional and talked about this for a little while

longer, I sensed she was sad. Maybe she finally understood. Maybe she

realized that she never could truly and honestly say she understands.

But at least now she might not complain so much when I can't go out for

dinner some nights, or when I never seem to make it to her house and

she always has to drive to mine. I gave her a hug when we walked out of

the diner. I had the one spoon in my hand and I said " Don't worry. I

see this as a blessing. I have been forced to think about everything I

do. Do you know how many spoons people waste everyday? I don't have

room for wasted time, or wasted " spoons " and I chose to spend this time

with you. "

Ever since this night, I have used the spoon theory to explain my life

to many people. In fact, my family and friends refer to spoons all the

time. It has been a code word for what I can and cannot do. Once people

understand the spoon theory they seem to understand me better, but I

also think they live their life a little differently too. I think it

isn't just good for understanding Lupus, but anyone dealing with any

disability or illness. Hopefully, they don't take so much for granted

or their life in general. I give a piece of myself, in every sense of

the word when I do anything. It has become an inside joke. I have

become famous for saying to people jokingly that they should feel

special when I spend time with them, because they have one of

my " spoons " .

© 2003 by Miserandino Butyoudontlooksick.com