Re: Unsure of myself

July 12, 2004

Hey Dix, I know what your going through, I have mostly bad days it

seem anymore. I just can't tolerate the pain like I use to, so I do

take mine when I need them. I find laying in bed for long periods

just make my joints worse. I have to move around quite a bit.

It is scary when you had to watch someone you love, go through pain,

and pass at a early age, I can understand why your cautious.

My advice would be,....Your the only one who knows how much pain you

can tolerate. It is very important with RA to keep joints active as

possible, we have to keep moving.

It is very important to take the meds that slow the progression of

the RA down, you want to try to take the best possible care of you.

You shouldn't feel guilty of resting when your not feeling well. We

all want our lives to be normal, and to be able to do activities that

everyone else does, but we have a limit. So, we need to not push

ourselves, and others shouldn't make us feel bad when we can't.

You take care of yourself, and know that were all here for you, Tawny

> I have what is a problem to me that I'd like some advice on.

> Like pretty much everyone here, I have good days and bad days.

Unfortunately, there have been a lot more bad days recently than good

ones. I have meds I can take, but tend to be cautious about narcotic

painkillers. I also have muscle relaxers for my fibro, and valium

for my AS when the inflammation starts pinching the nerves. I try to

take only what I need to bring it down to a tolerable level.

Sometimes, even 2 Percocet doesn't have much of an impact. And that's

something I rarely do - take 2 of a med.

> So, on the trally bad days, when it hurts just to walk, I'll go

back to bed and put on a relaxing CD. Sometimes, I'll end up

spending most of the day in bed.

> And I feel guilty when I spend a lot of time in bed. I think

it goes back to my childhood when I was told literally every day that

I wasn't good enough and I would never be good enough. Spent 15

years in therapy getting rid of most of the " ghosts " .

> I was also taught that there was always someone worse than I

was. My Dad was fully fused from AS and worked full time. Of

course, he took massive amount of prednisone and painkillers to be

able to do so, and died at age 51 from the side effects of all those

meds. It's one of the reasons I watch my meds.

> But I know there are people all over the world who have many,

many more problems than I do, and a lot of them have no meds to help

them out.

> So, the bottom line is that I don't know if I should be pushing

myself more than I do on the bad days, or if I should find a way to

stop feeling guilty for resting on those days.

> Any help would be most appreciated.

> Dix

>

July 12, 2004

I am finally over the guilt thing about sleeping. I just give in to it and rest

as needed. My mother never let me sleep late. In fact, until a few years ago

she lived with us for FIVE years! It was awful. I told her if our door was

closed to leave me alone. She would insist on knocking and ask if I was awake.

It drove me crazy. Then she would send kids in to get me. Once she called on

her cell phone and didn't hang it up because she didn't know how and she told

her sister, well, she was in bed when I left, now she's just not answering her

phone. It recorded that on my answering machine. Now that we've finally moved

her out at least she waits until after noon to call on the weekends. She will

always ask how I'm feeling but doesn't want to hear the answer. She'll go on

and on about how she has her problems and how she'll hurt until the day she

dies. Doesn't stop her from playing bingo and going on the gambling boats.

Wish I had her energy. She also talks non-stop. When I'm hurting or tired and

I don't feel like talking.

Becky

[ ] Unsure of myself

I have what is a problem to me that I'd like some advice on.

Like pretty much everyone here, I have good days and bad days.

Unfortunately, there have been a lot more bad days recently than good ones. I

have meds I can take, but tend to be cautious about narcotic painkillers. I

also have muscle relaxers for my fibro, and valium for my AS when the

inflammation starts pinching the nerves. I try to take only what I need to

bring it down to a tolerable level. Sometimes, even 2 Percocet doesn't have

much of an impact. And that's something I rarely do - take 2 of a med.

So, on the trally bad days, when it hurts just to walk, I'll go back to

bed and put on a relaxing CD. Sometimes, I'll end up spending most of the day

in bed.

And I feel guilty when I spend a lot of time in bed. I think it goes back

to my childhood when I was told literally every day that I wasn't good enough

and I would never be good enough. Spent 15 years in therapy getting rid of most

of the " ghosts " .

I was also taught that there was always someone worse than I was. My Dad

was fully fused from AS and worked full time. Of course, he took massive amount

of prednisone and painkillers to be able to do so, and died at age 51 from the

side effects of all those meds. It's one of the reasons I watch my meds.

But I know there are people all over the world who have many, many more

problems than I do, and a lot of them have no meds to help them out.

So, the bottom line is that I don't know if I should be pushing myself

more than I do on the bad days, or if I should find a way to stop feeling guilty

for resting on those days.

Any help would be most appreciated.

Dix

July 12, 2004

Hi Dix,

It's still a little difficult for me to relate to some degree where medication

is concerned, because I'm still undergoing assessment and won't have a

determination for about 3 more weeks, but I have also refrained from taking any

drugs for most of my life. Didn' t want " all that stuff in my system " . Now the

counter medications that my specialist has temporarily prescribed to me, are

helping me to live with my pains by easing it. Dix, it would likely be a good

idea to discuss your medical concerns with a specialist who can assess you and

understand your fears. It will help to ease your mind as well.

As for spending any " extra " time in bed, that was something taught to me early

in my youth, that it is done only if a person was either " sick " or " lazy " . Never

mind that you may have been feeling awful, awful, awful by a very exhausted

body. Dixie, I guess what I'm trying to say is this: our bodies are not made to

be totally free from stress, aches, illness or unforseen disease like RA and the

such. When it tires, or is weaken, it requires rest to heal or become

strengthened again. I feel it is nature's way of saying " help me to take care

of you " . Dix, it is good to be a hard worker, but when you body is screaming for

you to stop and rest, you need to listen or it will shut down on you sooner or

later. Mine nearly did. Be good to yourself when you need to stop and

recuperate so that you can be productive again later. RA and such will rob you

of energy and strength, and sometimes without warning. You're not being lazy,

so please don't feel guilty.

It is true that many people do not have the opportunity or the meds to help

them receive rest or help when they are in pain, but this is changing, as

organizations do exist for those in need, such as my husband and myself; if you

have the option to receive medication and to rest when you need to, it would be

wiser to do so for your own well being.

When our parents were younger, much of their life was difficult and resources

limited. They were forced to endure many things that we may not have to now.

So, please be good to yourself, and take care of Dixie.

Sincerely,

Jefersea