My Quality of Life Statement March 23, 2005
Newly diagnosed and yet to meet with a Neurosurgeon, I'm scared to death. I feel as if a major part of my life has been nothing but a lie. The reason I feel this way is simple. No one around me understands the issues related to RLS, so they've basically called me a liar. I'm making the whole thing up. I've never had problems until the sleep clinic diagnosed me. You'd feel better if you excersized and got off your fat ****. You take too many drugs, your liver is going to die. You really don't need to take all that stuff.
Dear people, have I left out anything that you haven't heard in your struggle to find peace? Not only am I fighting this "thing" that has decided to try to control my life, but I have to deal with the ignorance of others. Those who do not have a medical degree, but know all there is to medicine. I'm still working 40 hours / week and the idiot that is my supervisor made me get doctors notes to prove I'm not lying so I can get a comfortable chair for my desk. It's hard enough trying to deal let alone having jackasses that call you a liar!
I'm sorry if I am repeating and I'm sorry if I've fallen way off base with the subject matter. I have spent the past 17 years of my life fighting. Fighting to save my life from an abusive husband, fighting to make my life better for me and my daughter, and now fighting RLS.
My quality of life now stinks and until I can compile all the information I can get to make these naysayers go away, I cannot forsee it getting any better.
Thanks for your time.
It's Early, Quality of Life Plea for 2005
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Penguinrocks
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oh my
I want to thank you Penguin. I feel the same way. no one understands, just ignore it, you didn't have the problem until the doctor said you did, give me a break. I literally wore my chair at work down to the nails from sitting on my feet to get control of them. I just got a new chair last week. I have worked here 8 years. Oh well. It's nice and cushy. It seems to help the pain in the back of my thighs and bum. I can't believe your work needed a doctors note for a new chair. Yah and exercise makes everything better! LOL. When I get enough time or energy to exercise, I just do light yoga and pilates and I hurt for a week after every time.
Thanks for your post. Look forward to talking again!!!!
Luv ya Sugs
Thanks for your post. Look forward to talking again!!!!
Luv ya Sugs
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Penguinrocks
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Sugs,
Hi there! Nice to meet you!
I couldn't believe he made me get a note either especially when he's out more than anyone claiming he's ill.
Anyway, this excercise thing. I already feel like I've run the Boston Marathon, why or how could I make my body go through more of it? I guess to people around me, I'm real stupid.
Thank you so much for having this site! I love knowing I'm not alone. Only "we" would know how much that means.
Hi there! Nice to meet you!
I couldn't believe he made me get a note either especially when he's out more than anyone claiming he's ill.
Anyway, this excercise thing. I already feel like I've run the Boston Marathon, why or how could I make my body go through more of it? I guess to people around me, I'm real stupid.
Thank you so much for having this site! I love knowing I'm not alone. Only "we" would know how much that means.
Beware the Penguin
Thank you
Well Miss Penguinrocks,
Your statement is truely special. Your words voice what most of us felt in learning the term RLS. I Thank you for your voice from the starting lines of diagnosis and the begining of treatment.
Yup, I'd love to say we were pro's at living with RLS, but it's not too easy somedays......most days.
You found a place where everyone understands. And you should know Hope is the word. It can get better. It starts here, with all the wonderful people and the awesome support.
It's statements like yours, View's, Jan's, Rubyslippers, Brady, Sugar's.......we are going to move this wave forward.
Thank you for your words.
Hugs to all.
PS, Sugar congrats on the new chair at work.....
LOL
Your statement is truely special. Your words voice what most of us felt in learning the term RLS. I Thank you for your voice from the starting lines of diagnosis and the begining of treatment.
Yup, I'd love to say we were pro's at living with RLS, but it's not too easy somedays......most days.
You found a place where everyone understands. And you should know Hope is the word. It can get better. It starts here, with all the wonderful people and the awesome support.
It's statements like yours, View's, Jan's, Rubyslippers, Brady, Sugar's.......we are going to move this wave forward.
Thank you for your words.
Hugs to all.
PS, Sugar congrats on the new chair at work.....
LOL-
Penguinrocks
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Penguinrocks
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Hello my lovlies
Well, had my first appointment with a Psychiatrist today. It was also my last. Not only did I have to drive on the highway in the pouring rain, i had to walk 1 mile to the freakin' office. Da gams are screaming at me!
What happened at the shrinks office????? She signed me up for OBESITY CLASSES. ok ok...ya I know in the Penguin world I'd be a King penguin. Got a lot to keep me insulated during those hard arctic months. But, has anyone here been told that their obesity is the cause of their RLS?????
Please......my self esteem is lower than low as it is. Now I've got a shrink telling me that because i'm fat is a huge (pun intended) reason. Then she doesn't want to see me again. Good, cuz I felt the same way. I told her I thought my effexor triggered it where the RLS web site says that Effexor is an SSRI. BIG TRIGGER. So, begins for me where y'all have been before. Neuro is Apr 28. No one will do anything for me until I see him.
So be it.
Take care
Dawn
Well, had my first appointment with a Psychiatrist today. It was also my last. Not only did I have to drive on the highway in the pouring rain, i had to walk 1 mile to the freakin' office. Da gams are screaming at me!
What happened at the shrinks office????? She signed me up for OBESITY CLASSES. ok ok...ya I know in the Penguin world I'd be a King penguin. Got a lot to keep me insulated during those hard arctic months. But, has anyone here been told that their obesity is the cause of their RLS?????
Please......my self esteem is lower than low as it is. Now I've got a shrink telling me that because i'm fat is a huge (pun intended) reason. Then she doesn't want to see me again. Good, cuz I felt the same way. I told her I thought my effexor triggered it where the RLS web site says that Effexor is an SSRI. BIG TRIGGER. So, begins for me where y'all have been before. Neuro is Apr 28. No one will do anything for me until I see him.
So be it.
Take care
Dawn
Beware the Penguin
Awwwww, Penguin.... DARN! I was hoping for better for you... but glad you went, and sounds like you did fine. 
I liked that it was "mutual" that you don't want to see her again either. That's just how I would have felt in your shoes... well, I told you a bit of my 'bad doctor story', so you know I DID feel that way in your shoes!
As for overweight and RLS... I think others HAVE been told the same thing as you were told. I wouldn't know, I've not been to a doctor yet for my RLS. I'm heavier than I've ever been in my life, and my RLS is worse than it's ever been. Correlation? Well, it seems unlikely to ME, personally, that of all things THAT is the one that is controlling the recent progression of my condition. All research seems to indicate that RLS is a problem of chemistry-- dopamine either not being sufficient or not being used properly by our bodies. I'd love to hear the explanation for what our weight has to do with our dopamine levels/utilization.... but I'm not scientist, so what do I know.
Did the doc address the Effexor thing at ALL? Suggestions for tapering off or anything at all? Or is it just "stay the course" until you see the neuro? Seems like the Effexor doesn't have anything to contribute to your RLS-health.... and if your "whole problem" is being overweight, you shouldn't need the Effexor, right? This doc didn't prescribe that, right? Who did???? Can they give you guidance for cutting back or weaning off??? You can't just go on and off those things willy-nilly, but if it IS making the RLS worse, seems horrible to face having to take it another month if you don't need to.
Well, anyway, thanks for posting the update, Dawn! You hang in there. Pat those poor gams for me! And hope they recover soon.
Hugs-- Sara
PS.... I did okay on my long drives yesterday. Didn't get to drive at all, and there were detours and traffic that added quite a bit of time to the length of the trip each way. But I didn't push the floorboard out of my car, so that's the good news, right? LOL Wasn't pretty, but I did get a good laugh because my sis-in-law's hubby was sitting next to me and had his shoes off under the table during Easter dinner, and later just put them on without lacing them. He's an RLS sufferer, too, though the rest of the family doesn't quite seem to get the seriousness of the situation. We have little short-hand looks and winks and such for when we can tell the other one's RLS is flaring up, and we want them to know we understand. That's kind of nice, anyway.
I liked that it was "mutual" that you don't want to see her again either. That's just how I would have felt in your shoes... well, I told you a bit of my 'bad doctor story', so you know I DID feel that way in your shoes!
As for overweight and RLS... I think others HAVE been told the same thing as you were told. I wouldn't know, I've not been to a doctor yet for my RLS. I'm heavier than I've ever been in my life, and my RLS is worse than it's ever been. Correlation? Well, it seems unlikely to ME, personally, that of all things THAT is the one that is controlling the recent progression of my condition. All research seems to indicate that RLS is a problem of chemistry-- dopamine either not being sufficient or not being used properly by our bodies. I'd love to hear the explanation for what our weight has to do with our dopamine levels/utilization.... but I'm not scientist, so what do I know.
Did the doc address the Effexor thing at ALL? Suggestions for tapering off or anything at all? Or is it just "stay the course" until you see the neuro? Seems like the Effexor doesn't have anything to contribute to your RLS-health.... and if your "whole problem" is being overweight, you shouldn't need the Effexor, right? This doc didn't prescribe that, right? Who did???? Can they give you guidance for cutting back or weaning off??? You can't just go on and off those things willy-nilly, but if it IS making the RLS worse, seems horrible to face having to take it another month if you don't need to.
Well, anyway, thanks for posting the update, Dawn! You hang in there. Pat those poor gams for me!
And hope they recover soon.
Hugs-- Sara
PS.... I did okay on my long drives yesterday. Didn't get to drive at all, and there were detours and traffic that added quite a bit of time to the length of the trip each way. But I didn't push the floorboard out of my car, so that's the good news, right? LOL Wasn't pretty, but I did get a good laugh because my sis-in-law's hubby was sitting next to me and had his shoes off under the table during Easter dinner, and later just put them on without lacing them. He's an RLS sufferer, too, though the rest of the family doesn't quite seem to get the seriousness of the situation. We have little short-hand looks and winks and such for when we can tell the other one's RLS is flaring up, and we want them to know we understand. That's kind of nice, anyway.
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Penguinrocks
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Hiya
Ya, this is the heaviest I've been too. But could it be that the misuse of dopamine is causing the heaviness to cause the RLS?????
Fixed my treadmill yesterday, and with the mile walk today, I don't know how much of the mill i could handle, but i'll try.
She said she thinks i shouldn't touch my effexor levels until i meet with the neuro. Well i could have told them all that the neuro should be the first on my list. *sigh* like in 1995 when I ruptured two disks in my lower back, they kept sending me for x rays that show nothing until i basically ordered doc to send me for a ct scan. Shazaaam!
again *sigh*
I'm so glad you did well on your trip! Any milestone that anyone can make to tell RLS to bite our butts is a good thing!
Ya, this is the heaviest I've been too. But could it be that the misuse of dopamine is causing the heaviness to cause the RLS?????
Fixed my treadmill yesterday, and with the mile walk today, I don't know how much of the mill i could handle, but i'll try.
She said she thinks i shouldn't touch my effexor levels until i meet with the neuro. Well i could have told them all that the neuro should be the first on my list. *sigh* like in 1995 when I ruptured two disks in my lower back, they kept sending me for x rays that show nothing until i basically ordered doc to send me for a ct scan. Shazaaam!
again *sigh*
I'm so glad you did well on your trip! Any milestone that anyone can make to tell RLS to bite our butts is a good thing!
Beware the Penguin
Dawn--
I think my thyroid took a dive when I had my first kid, so dopamine probably doesn't have a relation to that for ME.
But here's the vicious circle on weight gain and RLS.... some RLSers find that exercise exacerbates their symptoms! Now what? Most overweight people have a combination of 'reasons'.... slow metabolism, lack of exercise, too much food and not the best combinations/proportions of food.
SURE, I can be more vigilant about what and how much I eat... but you have to eat "enough" food to keep your metabolism strong, you need to exercise to stimulate your metabolism and work off the food you needed to eat to keep your body processing and metabolizing... but if exercising makes RLS worse, then maybe you do it anyway and are miserable and exhausted (not got for adrenals or overall health) because the RLS keeps you from resting, or you don't do it which is bad for your overall health and feeling of well-being (really bad for anxiety and depression levels, too!).
That's not even to mention the negative effects on appetite, metabolism, weight, etc. of some meds. Sheeesh!
Now personally, I've NOT seen a direct correlation between regular exercise and RLS
so I can't really complain about this. I only notice an exacerbation of RLS when I've exercised so hard that I'm super-tired in the evening, or done heavy exercise which is tough on both my RLS symptoms and my joints, and I do pay for that. But PLENTY of people here do find exercise is tough on their RLS, so I ESPECIALLY love any doc telling any RLS sufferer to "lose some weight". 
I've known some great doctors, but frankly, I'm getting sort of less-and-less impressed with their "solutions" lately. Just me personally.....
BUT, ironically, I'm off now to do my relatively-new daily "workout"... decided to set a time (when my kids do homework) to at the very least, stretch really well and dance a bit, but usually also I use my cross-county ski machine, too. Not noticing any improvement in weight, general health or RLS (or any negative effect, either). But it does help my mood stability a bit, and it warms me up when it's cool in the house. I've always gotten cold easily. My RLS is already in gear this afternoon (4 pm, my time), but sitting at the computer's no better for me than working-out, so I might as well work out, and if it's worse later, well, so be it... at least I got stretched out and a little endorphin rush.
Take care.
Sara
I think my thyroid took a dive when I had my first kid, so dopamine probably doesn't have a relation to that for ME.
But here's the vicious circle on weight gain and RLS.... some RLSers find that exercise exacerbates their symptoms! Now what? Most overweight people have a combination of 'reasons'.... slow metabolism, lack of exercise, too much food and not the best combinations/proportions of food.
SURE, I can be more vigilant about what and how much I eat... but you have to eat "enough" food to keep your metabolism strong, you need to exercise to stimulate your metabolism and work off the food you needed to eat to keep your body processing and metabolizing... but if exercising makes RLS worse, then maybe you do it anyway and are miserable and exhausted (not got for adrenals or overall health) because the RLS keeps you from resting, or you don't do it which is bad for your overall health and feeling of well-being (really bad for anxiety and depression levels, too!).
That's not even to mention the negative effects on appetite, metabolism, weight, etc. of some meds. Sheeesh!
Now personally, I've NOT seen a direct correlation between regular exercise and RLS
so I can't really complain about this. I only notice an exacerbation of RLS when I've exercised so hard that I'm super-tired in the evening, or done heavy exercise which is tough on both my RLS symptoms and my joints, and I do pay for that. But PLENTY of people here do find exercise is tough on their RLS, so I ESPECIALLY love any doc telling any RLS sufferer to "lose some weight". I've known some great doctors, but frankly, I'm getting sort of less-and-less impressed with their "solutions" lately. Just me personally.....
BUT, ironically, I'm off now to do my relatively-new daily "workout"... decided to set a time (when my kids do homework) to at the very least, stretch really well and dance a bit, but usually also I use my cross-county ski machine, too. Not noticing any improvement in weight, general health or RLS (or any negative effect, either). But it does help my mood stability a bit, and it warms me up when it's cool in the house. I've always gotten cold easily. My RLS is already in gear this afternoon (4 pm, my time), but sitting at the computer's no better for me than working-out, so I might as well work out, and if it's worse later, well, so be it... at least I got stretched out and a little endorphin rush.
Take care.
Sara
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Penguinrocks
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Sara
So if WE RLS suffers are caught in the preverbile catch 22, how can we find that loop hole????? lol
I have hypothyroidism myself. 100 mg of Levoxyl for me. Doc says i'm on the "low end" so my dosage is low.
so me being obese is caused by:
bad eating habits, lack of excercise, hypothyroid, low self esteem, food being the only "thing" to fill the void in my soul.
things causing RLS:
my dopamine synapses aren't synapsing correctly and my big fat obese body.
I have to keep telling myself that I AM a good person. I've done nothing wrong to anyone in my lifetime. I have the patience of a saint, but not with myself. So, I guess as long as I have all these pain meds, might as well walk my self to the brink of collapse and get this weight off.
Night
Love ya
Dawn
So if WE RLS suffers are caught in the preverbile catch 22, how can we find that loop hole????? lol
I have hypothyroidism myself. 100 mg of Levoxyl for me. Doc says i'm on the "low end" so my dosage is low.
so me being obese is caused by:
bad eating habits, lack of excercise, hypothyroid, low self esteem, food being the only "thing" to fill the void in my soul.
things causing RLS:
my dopamine synapses aren't synapsing correctly and my big fat obese body.
I have to keep telling myself that I AM a good person. I've done nothing wrong to anyone in my lifetime. I have the patience of a saint, but not with myself. So, I guess as long as I have all these pain meds, might as well walk my self to the brink of collapse and get this weight off.
Night
Love ya
Dawn
Beware the Penguin
Hi Girls
HI ya Girls,
Thank God, another doctor with the education of a nat. RLS is a weight problem, jolly gee. The answer was before us all the time.
Penguin, I'm so sorry it went that way. I simply do not know why this community doesn't stand up and scream "WAKE UP"!
It's a shame that anyone has to hear that. My husband is a bit artic ready himself and couldn't be in better shape. Well, minus the heart valve thingy. I mean, until last month worked out three times a week and rode his bike 30-40 miles everyweekend. But since his build is larger than most, and it is naturally, all of his problems have always been his weight....in any new doctor's eyes. He calls it the Fat Bas***d Symdrome. LOL
Any speaking of in good shape......Sara, could you work any harder on a daily basis. Good Gosh, the woman and her husband are building the house you live in. I wish I was that active, but my little gardens and (now) bowling twice a week does not compare. By the way, I'm so glad Easter went well. Gotta love having the secret RLS signals with the brother in law. My grandma and I did, too. The shoe thing under the table, isn't that why they invented slipons? LOL
Ok, so I do ok on the food part, minus coffee in the morning and chocolate once a month. I even try to make myself have a regular bedtime. I'm sleeping much through the night, but I have and can again...right?
This thought that we are somehow doing this to ourselves or it's a mental thing is becoming more than frustrating. Penguin hang in there, hopefully the Neuro will be better informed than most of the medical community.
Hugs to all.
Thank God, another doctor with the education of a nat. RLS is a weight problem, jolly gee. The answer was before us all the time.
Penguin, I'm so sorry it went that way. I simply do not know why this community doesn't stand up and scream "WAKE UP"!
It's a shame that anyone has to hear that. My husband is a bit artic ready himself and couldn't be in better shape. Well, minus the heart valve thingy. I mean, until last month worked out three times a week and rode his bike 30-40 miles everyweekend. But since his build is larger than most, and it is naturally, all of his problems have always been his weight....in any new doctor's eyes. He calls it the Fat Bas***d Symdrome. LOL
Any speaking of in good shape......Sara, could you work any harder on a daily basis. Good Gosh, the woman and her husband are building the house you live in. I wish I was that active, but my little gardens and (now) bowling twice a week does not compare. By the way, I'm so glad Easter went well. Gotta love having the secret RLS signals with the brother in law. My grandma and I did, too. The shoe thing under the table, isn't that why they invented slipons? LOL
Ok, so I do ok on the food part, minus coffee in the morning and chocolate once a month. I even try to make myself have a regular bedtime. I'm sleeping much through the night, but I have and can again...right?
This thought that we are somehow doing this to ourselves or it's a mental thing is becoming more than frustrating. Penguin hang in there, hopefully the Neuro will be better informed than most of the medical community.
Hugs to all.
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ViewsAskew
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Becat, it's working! Do you all remember a post a while back about We Move looking for stories? I sent mine in a month or so ago and was contacted today. We Move has contracted with a healthcare pulic relations firm to start a big PR campaign about movement disorders. The campaign will start in about 2 weeks. They are contacting all media in many markets throughout the US. From the letters that were sent in, they have identified people that the media can contact to interview or for more information.
I wrote my first QoL statement here at Becat's urging. Having done that, I had the courage to write a new one to send to We Move. Amazing, but now I'm on the list for reporters to call in my area! We are having an effect. It may not be fully realized for awhile, but it is happening. Keep writing. Keep telling people. Keep sharing. We can, and will, make a difference.
Ann
I wrote my first QoL statement here at Becat's urging. Having done that, I had the courage to write a new one to send to We Move. Amazing, but now I'm on the list for reporters to call in my area! We are having an effect. It may not be fully realized for awhile, but it is happening. Keep writing. Keep telling people. Keep sharing. We can, and will, make a difference.
Ann
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Penguinrocks
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MY QUALITY OF LIFE STATEMENT (Moved from another thread)
Hi, it's Jan
I just sent my Q of L statement to Becat, but thought I'd post it here.
Restless Les Syndrome. It starts as a feeling that you know everything isn't quite right. You may feel uneasy, jittery, have a creepy-crawly sensation, feel over tired--but you feel it coming and you know you can't stop it. Soon, the feeling overtakes you, becoming more and more intense. It may start to hurt, ache, you may have to move your legs and/or arms uncontrollably. Before you know it, you are in the midst of a full-fledged RLS attack. You are no longer in control of your own body. You can no longer lie still, sit still, think--all you can do is rock back and forth, walk and walk, kick your legs thrash your arms--until you are so exhausted you break down in tears. But tears don't help. Your mind yells "SLEEP", but your body won't let you. It betrays you--making your tired limbs move over and over and over, even though your eyes are red from crying and lack of sleep. You may even scream, hit something, nothing helps. You walk and walk, all night long. You try to read, watch TV, and use the computer--usually to no avail. Because, you see, "it" won't let you sit still long enough to do anything to get your mind off of your legs/arms/torso. There seems to be a cycle for this thief, this robber of life. As everyone else sleeps, and you are so lonely in your night walking, you watch the sun come up in solitary silence, and it seems, unlike the legendary Vampire, daylight makes RLS symptoms lesson, at least for awhile
RLS is a robber of life--MY life and my family’s lives. It eats away at you like a tumor, growing inside you, slowly, so you don't notice the twitches too much, or the nights that maybe you're just "too tired to lie still". Then, when it is fully grown, the tumor we all have come to know as RLS TAKES OVER YOUR WHOLE LIFE. It makes decisions for you, defines relationships for you, sometimes even damaging relationships you have. And, it always has you in its grip--waiting, like the monster it is, until you are just about ready to drift off to sleep, or relax, or take a drive, and it suddenly POUNCES on you with the full force of evil, turning your body into a twisting, turning, jerking thing that you no longer have control over. It plays with your mind, too. "Oh, Wait, I can't do that, I won't be able to sit still." "Oh no, I'm about to run out of my medication. How can I possibly go anywhere, enjoy anything, LIVE?"
We (its VICTIMS), we ALL have a duty to ourselves, and an OBLIGATION to all future victims, to kick, yell, SCREAM, if necessary until someone listens to us. We are not hypochondriacs who just want attention. We are not over-tired, low on magnesium, too this or too that--WE ARE INFLICTED VICTIMS OF A HORRIBLE SYNDROME who DESERVE to live a normal life, sleep with our spouses and/or significant others, go to movies and actually SIT through one, to just LIVE!
I, for one, won't rest until I do WHATEVER I CAN to stop this horrible monster--this molester of our bodies, this killer of our hopes and dreams. I hope I live to see the day when someone, somewhere can say they have found a cure for this invisible disease. Until then, I will be a solder in the RLS survivor army, and I will march right beside each and every one of you using one of the best defenses we have--EDUCATION and HOPE!
Jan Yaeger
(Address and Phone Number)
_________________
I just sent my Q of L statement to Becat, but thought I'd post it here.
Restless Les Syndrome. It starts as a feeling that you know everything isn't quite right. You may feel uneasy, jittery, have a creepy-crawly sensation, feel over tired--but you feel it coming and you know you can't stop it. Soon, the feeling overtakes you, becoming more and more intense. It may start to hurt, ache, you may have to move your legs and/or arms uncontrollably. Before you know it, you are in the midst of a full-fledged RLS attack. You are no longer in control of your own body. You can no longer lie still, sit still, think--all you can do is rock back and forth, walk and walk, kick your legs thrash your arms--until you are so exhausted you break down in tears. But tears don't help. Your mind yells "SLEEP", but your body won't let you. It betrays you--making your tired limbs move over and over and over, even though your eyes are red from crying and lack of sleep. You may even scream, hit something, nothing helps. You walk and walk, all night long. You try to read, watch TV, and use the computer--usually to no avail. Because, you see, "it" won't let you sit still long enough to do anything to get your mind off of your legs/arms/torso. There seems to be a cycle for this thief, this robber of life. As everyone else sleeps, and you are so lonely in your night walking, you watch the sun come up in solitary silence, and it seems, unlike the legendary Vampire, daylight makes RLS symptoms lesson, at least for awhile
RLS is a robber of life--MY life and my family’s lives. It eats away at you like a tumor, growing inside you, slowly, so you don't notice the twitches too much, or the nights that maybe you're just "too tired to lie still". Then, when it is fully grown, the tumor we all have come to know as RLS TAKES OVER YOUR WHOLE LIFE. It makes decisions for you, defines relationships for you, sometimes even damaging relationships you have. And, it always has you in its grip--waiting, like the monster it is, until you are just about ready to drift off to sleep, or relax, or take a drive, and it suddenly POUNCES on you with the full force of evil, turning your body into a twisting, turning, jerking thing that you no longer have control over. It plays with your mind, too. "Oh, Wait, I can't do that, I won't be able to sit still." "Oh no, I'm about to run out of my medication. How can I possibly go anywhere, enjoy anything, LIVE?"
We (its VICTIMS), we ALL have a duty to ourselves, and an OBLIGATION to all future victims, to kick, yell, SCREAM, if necessary until someone listens to us. We are not hypochondriacs who just want attention. We are not over-tired, low on magnesium, too this or too that--WE ARE INFLICTED VICTIMS OF A HORRIBLE SYNDROME who DESERVE to live a normal life, sleep with our spouses and/or significant others, go to movies and actually SIT through one, to just LIVE!
I, for one, won't rest until I do WHATEVER I CAN to stop this horrible monster--this molester of our bodies, this killer of our hopes and dreams. I hope I live to see the day when someone, somewhere can say they have found a cure for this invisible disease. Until then, I will be a solder in the RLS survivor army, and I will march right beside each and every one of you using one of the best defenses we have--EDUCATION and HOPE!
Jan Yaeger
(Address and Phone Number)
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No one is alone who had friends.