sleep thief, LIFE THIEF!!!!

For everything and anything else not covered in the other WED/RLS sections.
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lyndarae
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hanging in there

Postby lyndarae » Sun Sep 05, 2004 5:12 am

hey all!! I went to doc and she let me try ultram for pain she gave me 30 tablets 50mg. Heres the thing she persricbed them as TAKE ONE TABLET AT BEDTIME FOR PAIN(MUST LAST 30DAYS NO EXCEPTIONS) Ha hahahaha since the zanax 1mg at bedtime with the mirapax, thats the only time I am not in pain!!! Im not complaining IM SLEEPING, BUT DAM she just doesnt get it...I feel like I should be the doc, ya know. Anyway I am now a working girl I got a job!!! First time in many years I am working at a place called belmont center it is for the special needs people. I am a direct care aide. hours are 230pm till 1030pm 4 days a week. This will be 15 men ages 15 to 56. All have been sexually abused and have sexually abused others. Since they are all mentally challeneged they are living here instead of prison. They can take care of their own needs but they need direction, I hope they like footy cause I will be working on sundays. This might sound like hard work to some but for me I have done this kind of work since I was in my 20s it takes me out of myself and then my pain doesnt seem so bad .I just pray that the meds I am on will keep working as they are for now just a little longer.Im trying to get the questionary out but cant figure out how to send it!! Some days I dont know if I am a foot or on horseback!!!!! love to all lyndarae

becat
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Hello You

Postby becat » Sun Sep 05, 2004 6:25 am

Oh Lyn What a wonderful post from you.
A job, sleep, and so you appt. with the Doctor went really well. Can we get a Amen from the choir. Sounds like things are really going so much better. And it's just great to hear from you.
Know this, we all stumble, that's how we learn to appreciate being able to run. The good with the bad, makes the good a little greater.
I just wanted to say thank you for checking in, you've been on my mind.
God bless, and many ((((hugs)))) to you.

jumpyowl
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Wonderful news, Lyn

Postby jumpyowl » Sun Sep 05, 2004 7:27 am

I answered your other note and am sending you an e-mail.

I will do my darnest to get you on the HONOR ROLL!

You already deserve it.
Jumpy Owl

Sole
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Postby Sole » Sun Sep 05, 2004 1:35 pm

Hi Lyndarae,

It's so good to hear from you and to hear that things are coming together. What an admirable thing you are doing, working with those boys.

Concerning the Ultram. Who's to know if you take your one dose during the day, instead of at night? If your pain is during the day....take it during the day, no? That way, you're still only taking the one dose but you're taking it when you need it. Glad to hear that the Mirapex and Xanax are working for you. Please keep us updated on the new job. Sounds fascinating! :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Elfrieda
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Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

The "living" dead

Postby Elfrieda » Sun Sep 05, 2004 5:21 pm

I was just reading over some older posts, still trying to catch up with the myriad of good information. I ran arcoss a post by Lyndarae in which she says, "but in serious cases, it kills the physical,social, and familial lives of all who are unlucky enough to be so plagued." I thought how true! People with RLS are, slowly and sometimes quickly, losing bits of their lives and bits of themselves. We are as surely "dying" as anyone with a terminal illness; however, we are still breathing and moving around, trying to have some kind of life. That is probably what causes that feeling of hopelessness discussed elsewhere on this board.

I recently told my husband that I felt like somethng was eating away my soul (meaning my mind, my life force, my being).

Elfrieda

becat
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SO right

Postby becat » Sun Sep 05, 2004 5:50 pm

I'm not sure I should say this publicly, but I so agree with your post Elfrieda. The loss of your soul, the slow intense eating away at the heart of your being.
here it is...........I have come to the conclusion in the past several years that i might live that long. My mother and father both healthly(for the most part) and in their 70's. My grandmother is almost 88. But I don't see myself there.
How can my body survive the constant pain, lack of sleep, and the overwhelming amounts of medication I take? The smallest injury takes for ever to heal. Our bodies only heal at rest.........Great, when will mine heal?
I will state again, I have never thought that the sun will not rise tomomorrow and that I should not rise with it. But I often wonder how many more will my body afford me?

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jan3213
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Becat and Elfrieda

Postby jan3213 » Sun Sep 05, 2004 6:11 pm

This is Jan

I'd like to add something to both your posts. First of all, I totally agree with both of you. RLS does eat away at you. I have said, many times, that it's not cancer, it's not terminal, but I wouldn't wish it on my worst enemy. I said, in my Lifestyle Statement, that, among other things, I miss dreaming, and that I haven't slept well (restorative sleeping) in so long. If you don't dream, I assume you don't reach REM. That is not healthy. And, I also stated that I don't want to become a burden to my husband. I have the painful kind of RLS. So do both of you. Most days, I can hardly walk when I first arise in the morning. I used to bound out of bed, as recently as six months ago. I don't dwell on the future, but if I progressed that quickly in six months, what will six years bring? It's scary, isn't it, how fast this demon called RLS can progress? And, it IS an invisible disease. When I ride in a car, or drive, for even 2 hours, I'm so stiff and sore when I get out of the car, I can hardly walk I'm only 57 years old. Just last year, my husband would tell me to slow down when we would walk. He couldn't keep up with me. Now, I'm the one saying "slow down". It makes me mad!! I know there are people who are so much more worse off than me. I tell myself that all the time. But, when it's YOUR PROBLEM , it's YOUR PROBLEM, do you know what I mean? I do go on and on don't I? You'll just have to except me for who I am.

Love and Hugs

Jan
No one is alone who had friends.

Elfrieda
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Location: dc

kindred spirits

Postby Elfrieda » Sun Sep 05, 2004 6:33 pm

OH, Jan. I have heard myself say that so many times. I know my problem isn't as bad as some others I've heard of, but it's my problem and I have to deal with it. It's the same as anyone else. My husband says sometimes that he has a head ache or a backache, but then immediately says he shouldn't complain to me because I have pain everywhere all the time, but I tell him it's his problem and it hurts him and that he has every right to mention his problems to me.

There are times I'm so glad when he asks me to bring him something from the kitchen, if I'm in there, or toss him an afghan when we're sitting in the living room. It makes me feel almost normal to do something for him.

I got a bit off topic there, but I think you know what I mean.

I have almost decided that I had nothing to add to this board. Most of you have sleep problems, I don't seem to. I dream all the time. (It's the conscious dreams for the future, hopes and aspirations that I'm losing). But at the same time I have many symptoms in common with the people who post. Some of you have described symptoms that are common to the fibromyalia that I have. Oh, well.

Elfrieda

Sole
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Re: kindred spirits

Postby Sole » Sun Sep 05, 2004 6:40 pm

Elfrieda wrote:snip...I have almost decided that I had nothing to add to this board. Most of you have sleep problems, I don't seem to. I dream all the time. (It's the conscious dreams for the future, hopes and aspirations that I'm losing). .....Elfrieda


Elfrieda,

I have dreams too. Even when the legs flare. It doesn't prove or disprove anything. I know you've felt a bit off kilter because you don't know if you belong here or not. I am very glad you're here, RLS or not and hope you stick around. :-)
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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jan3213
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Please don't quit posting!

Postby jan3213 » Sun Sep 05, 2004 6:44 pm

Efrieda it's Jan

Please don't quit posting, because, even though you don't think you have the same problems, I'M LEARNING FROM YOU. I sometimes think I might have fibromyalgia (I've never checked that one out). And, you never know.......like losing words. There are so many symptoms--just because we all don't have the very same symptoms, doesn't mean we don't suffer from similar things that may be extensions of RLS. PLEASE DON'T LEAVE US. I always look forward to your posts. And, I DO THINK it helps me to hear about others' problems and I'm sure you feel the same, don't you? I told someone when I first became a member of this board, that I NEED to help, do you know what I mean? I think it's part of healing. Sometimes, I get things wrong, or I go on and on, but that's just me. Please don't leave. I'll miss you!!!

Jan
No one is alone who had friends.

nephriticus
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Philosophy 101

Postby nephriticus » Sun Sep 05, 2004 6:48 pm

I know there are people who are so much more worse off than me. I tell myself that all the time.


Well, Jan, there' s the ol' saying: "I cried because I had no shoes, 'til I met a man who had no feet." But, for some reason or other that bit of philosophy doesn't transcribe well into the realm of pain. Just because you know I just stubbed my toe doesn't make your toothache feel better.

Years ago I underwent four months of pain therapy for a spinal injury. It has helped me cope with aggravating pain. What is paradoxical is that chronic pain sufferers often unwittingly exacerbate their own pain. Through therapy one learns to interrupt the closed feedback loop of pain elevation. I wish I could package up what I know about pain abatement and mail it off to you and others.

Elfrieda
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Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

Postby Elfrieda » Sun Sep 05, 2004 6:48 pm

Honestly, I have gained a lot from the posts on this board. I had joined a fibromyalgia listserv and didn't get near the support or comraderie that I find here.

Elfrieda

Sole
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Re: Philosophy 101

Postby Sole » Sun Sep 05, 2004 6:50 pm

nephriticus wrote:snip.....I wish I could package up what I know about pain abatement and mail it off to you and others.


I have a box, some tape and my own personal address!!!! Would that help? :-)
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

jumpyowl
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Would you really want to help?

Postby jumpyowl » Sun Sep 05, 2004 6:56 pm

Could you try to write a brief summary to expand on what you hinted about? It sounded quite interesting and most of us or our loved ones would take any morsel of info gratefully and attempt to use it.

That would be very kind of you to make that effort. :oops:
Jumpy Owl

nephriticus
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Postby nephriticus » Sun Sep 05, 2004 6:57 pm

ROTFLOL

Sole, you tell me how you may slip your sense of humor into an envelope and I'll figure out how to package up my pain control empiricism. :P


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