When these uneducated people come around that think they have RLS we must kindly educate them. Know what the four main symptoms are. We dare not antagonize people but you are so right, we need to keep the doctors from tuning us out because all of a sudden RLS is the disorder of choice. Does any of that make sense? It's time for bed, I'm rambling. It's good to hear from my friends and meet new ones. RubyToo much press???
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I really wish that we could take some of these posts to our doctor, force them to read them then sit back and ask them, "Do you think these people are neurotic, hypochondriacs, just wanting sympathy? If you believe only 10% of what they are saying, you still have to see that they are in desparate need of your help! How can you sit there either smugly saying it isn't that bad, wait three weeks and we'll try to get you in or gee, I don't know what's wrong with you, try this and come back in a month." That's where Becat's Q of L comes in and darlin', mine is almost done. I'll email it to you doon. My sweet friends, I wish I could make it all go away. I emailed Sara the other day and told her that the Wicked Witch of the West and her flying monkeys have been after me lately. That's why I've not been around much. So I do understand what you are all going through. If I ever make it to Oz, I'll ask for a cure from the Wizard for us all. Enough silliness! When these uneducated people come around that think they have RLS we must kindly educate them. Know what the four main symptoms are. We dare not antagonize people but you are so right, we need to keep the doctors from tuning us out because all of a sudden RLS is the disorder of choice. Does any of that make sense? It's time for bed, I'm rambling. It's good to hear from my friends and meet new ones. Ruby
When these uneducated people come around that think they have RLS we must kindly educate them. Know what the four main symptoms are. We dare not antagonize people but you are so right, we need to keep the doctors from tuning us out because all of a sudden RLS is the disorder of choice. Does any of that make sense? It's time for bed, I'm rambling. It's good to hear from my friends and meet new ones. RubyHEY, JAN'S BACK AND SHE'S MAAAADDDDDDDDD
Hi, it's Jan
Hi Ruby, you sweet thing! Love you to death! Corrie, hi, thanks for all your advice and help. Ann, you too! Mary, nice to meet you and thanks for posting. BECAT, I'll get my Q of L statement to you tonight or tomorrow. And, I'll post it on here. Sara, sweetie, love you, too.
I saw my family physician yesterday and she got me a referral to a neurologist close to home who takes my insurance, and, according to my doc, likes to "think outside the box". I am EDUCATING my own doctor about RLS and she's very receptive!
The grieving process is moving right along. I'M ANGRY THIS YEAR, BECAT! I'll try not to snarl too much in my statement, but this is really getting my ire up! If I hear "have you tried magnesium" ONE MORE TIME, I think I'll flip. PLEEEEEEAAAZE! And, of course, there's the old "Oh, I feel like that OCCASIONALLY." Well, they obviously don't feel like "that" becasue if they did, they would know how incidious RLS is. (Sorry, Ann, loved that phrase.)
RLS is a robber of life--MY life and my families 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 the 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 actully SIT through one, 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!
Love you all
Jan
Hi Ruby, you sweet thing! Love you to death! Corrie, hi, thanks for all your advice and help. Ann, you too! Mary, nice to meet you and thanks for posting. BECAT, I'll get my Q of L statement to you tonight or tomorrow. And, I'll post it on here. Sara, sweetie, love you, too.
I saw my family physician yesterday and she got me a referral to a neurologist close to home who takes my insurance, and, according to my doc, likes to "think outside the box". I am EDUCATING my own doctor about RLS and she's very receptive!
The grieving process is moving right along. I'M ANGRY THIS YEAR, BECAT! I'll try not to snarl too much in my statement, but this is really getting my ire up! If I hear "have you tried magnesium" ONE MORE TIME, I think I'll flip. PLEEEEEEAAAZE! And, of course, there's the old "Oh, I feel like that OCCASIONALLY." Well, they obviously don't feel like "that" becasue if they did, they would know how incidious RLS is. (Sorry, Ann, loved that phrase.)
RLS is a robber of life--MY life and my families 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 the 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 actully SIT through one, 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!
Love you all
Jan
No one is alone who had friends.
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ViewsAskew
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Jan, it's my turn to have tears in my eyes. Thanks for sharing that anger - I'd briefly forgotten mine and mayhaps have become too complacent. Corrie gently reminded me a month or so ago, but I was so glad not to be doing daily battle and to have someone doing a better job of listening that all I did was file it in the back of my brain for later consumption.
When I read the paragraph about being the robber of your life, I was immediately transported to exactly what that feels like. If it's pounced on me once, it's pounced on my thousands of times. It just pounced tonight: sat down to watch some TV, which I don't often do, and pretty soon, BAM, there it was. It was my own fault as I've been taking my meds earlier in hopes of sleeping earlier in hopes of not being exhausted each morning when my Dearest's alarm goes off and I can't go back to sleep. But I digress. Tonight I forgot to take them earlier, but I've been up since early and RLS didn't wait for me.
Perhaps there is something to be said for never forgetting that anger and for keeping a bit of it with us, even if we have grieved or have come to acceptance. That anger can remind us of how far we've come and how easy it is to lose all that we've gained.
Thanks again, Jan.
Ann
When I read the paragraph about being the robber of your life, I was immediately transported to exactly what that feels like. If it's pounced on me once, it's pounced on my thousands of times. It just pounced tonight: sat down to watch some TV, which I don't often do, and pretty soon, BAM, there it was. It was my own fault as I've been taking my meds earlier in hopes of sleeping earlier in hopes of not being exhausted each morning when my Dearest's alarm goes off and I can't go back to sleep. But I digress. Tonight I forgot to take them earlier, but I've been up since early and RLS didn't wait for me.
Perhaps there is something to be said for never forgetting that anger and for keeping a bit of it with us, even if we have grieved or have come to acceptance. That anger can remind us of how far we've come and how easy it is to lose all that we've gained.
Thanks again, Jan.
Ann
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cornelia
Wow ladies! I can FEEL your anger across the big ocean!
I just want to say that acceptance doesn't mean you can't be on the barricades (is that English?). But it has to be done from a basic feeling of acceptance IMHO and work from there. Easier said than done, I know. The hardest thing of this disorder is that the words Relaxation and Rest are RLS's worst enemies, whereas with other diseases these words are benificial for easing pain.
Speaking of docs: a docter, an internist, has joined the Cyberspacegroup, because he has RLS himself. He wrote that most people in the group knew as much or even more thhan the average doc in the country. Go figure!
Corrie
I just want to say that acceptance doesn't mean you can't be on the barricades (is that English?). But it has to be done from a basic feeling of acceptance IMHO and work from there. Easier said than done, I know. The hardest thing of this disorder is that the words Relaxation and Rest are RLS's worst enemies, whereas with other diseases these words are benificial for easing pain.
Speaking of docs: a docter, an internist, has joined the Cyberspacegroup, because he has RLS himself. He wrote that most people in the group knew as much or even more thhan the average doc in the country. Go figure!
Corrie
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Brady--
This is an interesting idea.
I think that to be effective, letters to the editor would need to be very even-handed and calm and fact-filled. I think that one of the reactions people have to our condition is that somehow we're making it a bigger deal than it is. We bandy the word "hypochondriac" around here occasionally, and although that's probably an exaggeration, I think that's the "anti-goal"--- the thing we DON'T want to be seen as.
Jan (long-time Jan, not newer Jan -- Hi, ladies!) said something to me the other day about people thinking you're making a big deal to get attention. But who would WANT attention for this? Heck, I could think of a bunch more "glamorous" and "interesting" conditions to have if all I wanted was attention. I could also think of ones that actually might GET me some attention. Mostly talking about RLS doesn't get me much more than ......
or 
Why would I embellish for THAT?
BUT, there are facts, there are stories, there are things about the life that people with moderate to severe RLS face daily that I think WOULD be worth saying, so I think it's something to consider.
Ruby said something in her post that might have slipped by some of us, and that was that the people who are just now hearing about RLS (especially those who think that they have it, but maybe don't) need to be educated KINDLY about the realities of RLS. I think that if you go from a standpoint of giving people the benefit of the doubt but then providing more information about the extent to which you suffer, you have a better chance of winning them to your case.
If someone who has a LITTLE trouble getting to sleep like Ann talked to hears (in a non-abrasive way) about how much MORE trouble they might have... or something that's similar to the sensations they feel, even if they'll never feel that way, they MIGHT well be able to step back and see the potentialities of RLS in a more compassionate way. If we all go out, "guns blazing" so to speak, telling everyone off because they don't suffer like we or our friends here do, we're more likely to only hurt our own "press" (public relations.)
So.... if I see anything, I think I might consider writing in rebuttal, too, Brady. I think that there might not be any such thing as "too much press" IF we learn to use the press to our OWN advantage.
Sara
This is an interesting idea.
I think that to be effective, letters to the editor would need to be very even-handed and calm and fact-filled. I think that one of the reactions people have to our condition is that somehow we're making it a bigger deal than it is. We bandy the word "hypochondriac" around here occasionally, and although that's probably an exaggeration, I think that's the "anti-goal"--- the thing we DON'T want to be seen as.
Jan (long-time Jan, not newer Jan -- Hi, ladies!) said something to me the other day about people thinking you're making a big deal to get attention. But who would WANT attention for this? Heck, I could think of a bunch more "glamorous" and "interesting" conditions to have if all I wanted was attention. I could also think of ones that actually might GET me some attention. Mostly talking about RLS doesn't get me much more than ......
or
Why would I embellish for THAT?
BUT, there are facts, there are stories, there are things about the life that people with moderate to severe RLS face daily that I think WOULD be worth saying, so I think it's something to consider.
Ruby said something in her post that might have slipped by some of us, and that was that the people who are just now hearing about RLS (especially those who think that they have it, but maybe don't) need to be educated KINDLY about the realities of RLS. I think that if you go from a standpoint of giving people the benefit of the doubt but then providing more information about the extent to which you suffer, you have a better chance of winning them to your case.
If someone who has a LITTLE trouble getting to sleep like Ann talked to hears (in a non-abrasive way) about how much MORE trouble they might have... or something that's similar to the sensations they feel, even if they'll never feel that way, they MIGHT well be able to step back and see the potentialities of RLS in a more compassionate way. If we all go out, "guns blazing" so to speak, telling everyone off because they don't suffer like we or our friends here do, we're more likely to only hurt our own "press" (public relations.)
So.... if I see anything, I think I might consider writing in rebuttal, too, Brady. I think that there might not be any such thing as "too much press" IF we learn to use the press to our OWN advantage.
Sara
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ViewsAskew
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Corrie, Brady, Sara - so many good points, so insightful. Rest and relaxation being the enemy of RLS never occurred to me. It could be a good way help others understand why RLS can be so difficult to deal with. The point about working from a place of acceptance while being on the barricades is important, especially as it ties into Sara's ideas. Brady, I've also heard that same underlying tone in some articles. Writing rebuttal letters is a great idea. Sara, you are so reasoned. You could write a great letter and post it here and we could all use it . I had to chuckle about using this as a way to get sympathy - boy could we all have picked something much better!
One of the hardest parts of this, to me, is how to distill it into something that people without will truly understand and think, "Oh, I get it. How awful." Analogies are hard to come by that really work and since most people have never felt it, it's hard to imagine. There was a great thread on the Yahoo group last fall started by Jill Gunzel and getting people to understand. Posts included things like Water Torture; feeling like drowning--constaing having to move or you'll go under and never being able to let go of your guard; having hiccups for days at a time; having claustrophobia and constantly being in a small space; that you can't get someone else to understand; after a busy day, every time you sat down to catch your breath, someone bothered you - a question, a noise, something more to be done - and this kept up all night long; having the same sensation as putting your tongue on a battery going through your legs or other body parts, but being unable to take your tongue away.
Maybe to provide a better understanding, you have to include more than one of them: the actual feeling analogy (pins being poked, electrical, being bitten by black flies) and the emotional analogy (drowning, constant hiccups, water torture).
Well, I digress again this morning. Must get some work done now that writing this has allowed me to sort of wake up
.
Ann
. I had to chuckle about using this as a way to get sympathy - boy could we all have picked something much better!
One of the hardest parts of this, to me, is how to distill it into something that people without will truly understand and think, "Oh, I get it. How awful." Analogies are hard to come by that really work and since most people have never felt it, it's hard to imagine. There was a great thread on the Yahoo group last fall started by Jill Gunzel and getting people to understand. Posts included things like Water Torture; feeling like drowning--constaing having to move or you'll go under and never being able to let go of your guard; having hiccups for days at a time; having claustrophobia and constantly being in a small space; that you can't get someone else to understand; after a busy day, every time you sat down to catch your breath, someone bothered you - a question, a noise, something more to be done - and this kept up all night long; having the same sensation as putting your tongue on a battery going through your legs or other body parts, but being unable to take your tongue away.
Maybe to provide a better understanding, you have to include more than one of them: the actual feeling analogy (pins being poked, electrical, being bitten by black flies) and the emotional analogy (drowning, constant hiccups, water torture).
Well, I digress again this morning. Must get some work done now that writing this has allowed me to sort of wake up
.
Ann
Ann, et al--
Different illnesses illicit different responses, and for obvious reasons. That's one of the reasons why we see that society embraces some illnesses and not others, why some types of research receive lots of funding, others struggle to receive any. A particularly poignant condition, a celebrity afflicted, a socially relevant connection, etc., can all help to make a diseaese "sexy" and get it attention. We can understand that.
And the responses to different illnesses seem to range from "Oh, my goodness, is there anything I can do to help" to "What the H*** is your problem?!" RLS seems most likely to illicit the latter. We definitely could have "chosen" better if we wanted sympathy!!!!
But in ONE sense, it's the PERFECT OPPORTUNITY to TELL them what the heck the problem IS!
I have used the point about relaxation and rest, and I've gotten a little understanding using it-- especially from moms and from firemen/police/military. They understand the concept of being totally exhausted and then having to face an interruption of their sleep -- or not being allowed to go to sleep at all. They know the desperation you feel when the thing keeping you from sleeping isn't trivial... it's not an annoyance... it's something really BIG, something important that CANNOT be overlooked, can't be ignored, requires not only for you to stay awake, but for you to take action.
RLS is like a lot like the sick child you must care for, the public safety hazard that must be dealt with, the danger in the night that you must be alert for. Most of us, even those with milder RLS, don't just get "a kick or two" or a temporary little surge of distressing sensations... what we feel is something too strong, too persistent and to INsistent to ignore. It's something compelling, literally and figuratively, and the ONE THING it most wants to prevent us from doing is having a quiet moment of rest.
Anyone with RLS-- like anyone else in a situation that requires them to push past the point of exhaustion consistently-- understands the long-term physical and mental ramifications of the denial of rest. Heck, sleep deprivation is a method used specifically to break down people's defenses and alter their outlook!!!!! A lot of RLS sufferers are being tortured with that EVERY NIGHT. That's not a "trivial" condition.
But we have to be our own best friends, not our own worst enemies. Be angry here, but when you have a chance to educate someone... be motivated, be assertive, be descriptive, be inspired, be persistent, be factual, be informed, etc.
Take care everyone!!!
Sara
Different illnesses illicit different responses, and for obvious reasons. That's one of the reasons why we see that society embraces some illnesses and not others, why some types of research receive lots of funding, others struggle to receive any. A particularly poignant condition, a celebrity afflicted, a socially relevant connection, etc., can all help to make a diseaese "sexy" and get it attention. We can understand that.
And the responses to different illnesses seem to range from "Oh, my goodness, is there anything I can do to help" to "What the H*** is your problem?!" RLS seems most likely to illicit the latter.
We definitely could have "chosen" better if we wanted sympathy!!!!
But in ONE sense, it's the PERFECT OPPORTUNITY to TELL them what the heck the problem IS!
I have used the point about relaxation and rest, and I've gotten a little understanding using it-- especially from moms and from firemen/police/military. They understand the concept of being totally exhausted and then having to face an interruption of their sleep -- or not being allowed to go to sleep at all. They know the desperation you feel when the thing keeping you from sleeping isn't trivial... it's not an annoyance... it's something really BIG, something important that CANNOT be overlooked, can't be ignored, requires not only for you to stay awake, but for you to take action.
RLS is like a lot like the sick child you must care for, the public safety hazard that must be dealt with, the danger in the night that you must be alert for. Most of us, even those with milder RLS, don't just get "a kick or two" or a temporary little surge of distressing sensations... what we feel is something too strong, too persistent and to INsistent to ignore. It's something compelling, literally and figuratively, and the ONE THING it most wants to prevent us from doing is having a quiet moment of rest.
Anyone with RLS-- like anyone else in a situation that requires them to push past the point of exhaustion consistently-- understands the long-term physical and mental ramifications of the denial of rest. Heck, sleep deprivation is a method used specifically to break down people's defenses and alter their outlook!!!!! A lot of RLS sufferers are being tortured with that EVERY NIGHT. That's not a "trivial" condition.
But we have to be our own best friends, not our own worst enemies. Be angry here, but when you have a chance to educate someone... be motivated, be assertive, be descriptive, be inspired, be persistent, be factual, be informed, etc.
Take care everyone!!!
Sara
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Here's My 75 cents Worth!
It's Jan
Well, this is an interesting discussion indeed. Rest and Relaxation. The very first thing I say to people when they ask me (and, sometimes, even if they DON'T ask me) what RLS is like is: Have you EVER had a night when you felt TOO TIRED to lie still--too tired to sleep? I'd say 95% of the people I pose that question to respond with a resounding YES! Then, I say, "Well, that's the way RLS is, EXCEPT multiply it by 1,000 and the experience that feeling EVERY SINGLE NIGHT of your life." Anyone I say that to seems to "get it". And, NO, just because the words are in caps, I'm not yelling! hehe And, when I said that people sometimes look at me as though I'm trying to get attention, of course I know how ludricious that is. I can't imagine a more ridiculous thing to complain about in order to get attention. I worry about getting the WRONG ATTENTION--I worry about people thinking I AM crazy, that I'm hooked on some illegal drug and coming down off of it (REALLY) or that my husband won't want to go out in public with me because HE's embarassed at my behavior. I'm really worried about that one.
Rest and relaxation have ALWAYS been my worst enemy. That goes without saying. I dread nighttime more than I can say. Especially lately. Having nightmares so badly that I wake my husband up screaming in my sleep--I'm sleeping in the family room two flights down from him; going into my 7th week of hives and, because I have RLS, not being able to take anti-histamines which seem to be the only drug, according to my doctors, to treat hives; and the usual up and down all night, leaving me so tired the next day I fall asleep doing normal activities, like eating in a restaurant and having my husband or friends nudge me to wake me up.
Yes, Corrire, I am angry. I'm angry that I have had this horrible thing for most of my life (probably ALL of my life) and now, when I should be able to relax and enjoy my retirement, not even being able to enjoy sewing because I fall asleep while using my sewing machine.
I'm sorry if I'm coming off badly tonight. I am so sick and tired of being sick and tired. I just want to feel normal, for one night. Brady, I know how hard it's been for you and I'm so sorry. Becat, you too. Sara, Ann, RUBY, Corrie, all of you--I understand completely. But, right now, I'm having such a hard time myself, it's a little bit hard for me to be unselfish--to think of anyone but me. I'm living in this miserable body that won't even let me enjoy a meal without going crazy from itching all over. I'm scared to close my eyes at night for fear of what I will see in my dreams. I have scratched myself until I have sores that have left scars, ugly scars--but then, who would want to look at me anyway because I've gained so much wait due to the medication I've been taking. I know, Brady, you wrote such a beautiful post to me and I appreciate it. But, I'm embarassed to go out in public, to play in the praise band in front of my church congregation, to allow my husband of almost 29 year to see me.
I'm not depressed; I'm almost used up. What I long for is to sleep so soundly that nothing will matter. Then to wake up, refreshed, REFRESHED, and know that I can actually get me back again. I don't want RLS to win, but I'm afraid it's going to.
Sorry, this is a bad night and I'm spent.
Jan
Well, this is an interesting discussion indeed. Rest and Relaxation. The very first thing I say to people when they ask me (and, sometimes, even if they DON'T ask me) what RLS is like is: Have you EVER had a night when you felt TOO TIRED to lie still--too tired to sleep? I'd say 95% of the people I pose that question to respond with a resounding YES! Then, I say, "Well, that's the way RLS is, EXCEPT multiply it by 1,000 and the experience that feeling EVERY SINGLE NIGHT of your life." Anyone I say that to seems to "get it". And, NO, just because the words are in caps, I'm not yelling! hehe And, when I said that people sometimes look at me as though I'm trying to get attention, of course I know how ludricious that is. I can't imagine a more ridiculous thing to complain about in order to get attention. I worry about getting the WRONG ATTENTION--I worry about people thinking I AM crazy, that I'm hooked on some illegal drug and coming down off of it (REALLY) or that my husband won't want to go out in public with me because HE's embarassed at my behavior. I'm really worried about that one.
Rest and relaxation have ALWAYS been my worst enemy. That goes without saying. I dread nighttime more than I can say. Especially lately. Having nightmares so badly that I wake my husband up screaming in my sleep--I'm sleeping in the family room two flights down from him; going into my 7th week of hives and, because I have RLS, not being able to take anti-histamines which seem to be the only drug, according to my doctors, to treat hives; and the usual up and down all night, leaving me so tired the next day I fall asleep doing normal activities, like eating in a restaurant and having my husband or friends nudge me to wake me up.
Yes, Corrire, I am angry. I'm angry that I have had this horrible thing for most of my life (probably ALL of my life) and now, when I should be able to relax and enjoy my retirement, not even being able to enjoy sewing because I fall asleep while using my sewing machine.
I'm sorry if I'm coming off badly tonight. I am so sick and tired of being sick and tired. I just want to feel normal, for one night. Brady, I know how hard it's been for you and I'm so sorry. Becat, you too. Sara, Ann, RUBY, Corrie, all of you--I understand completely. But, right now, I'm having such a hard time myself, it's a little bit hard for me to be unselfish--to think of anyone but me. I'm living in this miserable body that won't even let me enjoy a meal without going crazy from itching all over. I'm scared to close my eyes at night for fear of what I will see in my dreams. I have scratched myself until I have sores that have left scars, ugly scars--but then, who would want to look at me anyway because I've gained so much wait due to the medication I've been taking. I know, Brady, you wrote such a beautiful post to me and I appreciate it. But, I'm embarassed to go out in public, to play in the praise band in front of my church congregation, to allow my husband of almost 29 year to see me.
I'm not depressed; I'm almost used up. What I long for is to sleep so soundly that nothing will matter. Then to wake up, refreshed, REFRESHED, and know that I can actually get me back again. I don't want RLS to win, but I'm afraid it's going to.
Sorry, this is a bad night and I'm spent.
Jan
No one is alone who had friends.
Big hugs, Jannie, my dear!
You're hanging from the end of your rope, and we all understand why. If you start to slip, YELL, like tonight. We're all here to grab you.
I know that with fibro and RLS it was like a double-whammy, but heck, you're working on like fourple- or fipple- whammies about now. With the rash and the personal stuff and just being EXHAUSTED! It's amazing to me you're hanging in as well as you are!
As for "looking for attention"... the thing is, OF COURSE we wouldn't, but I think people really DO sometimes think that's what we're doing. Like we're making a big deal out of something small to get sympathy or attention or whatever. I know people who take small ailments and obsess about them... or just blow them out of proportion... and they ARE looking for something.
ALL we're looking for is RELIEF and HELP and CONSIDERATION. From doctors, from family, from friends. And I don't think that's much to ask. If you've gotten such rotten sleep (when you get any at all), that you're dozing off at dinner, you or anyone else oughtn't be embarrassed... it's cause for CONCERN, it's an indication of a serious on-going problem that needs improvement, if not resolution. At the VERY least , it ought to "buy" you some consideration and some "slack". You aren't exaggerating this is consuming and threatening your entire life!
If our loved ones and friends don't know what to do to help, I understand. But it doesn't change the situation we and they have to deal with. Wish we could do the old "Vulcan mind-meld" on them, or play brain-tapes like in the 80s movie "Brainstorm", so that they would clearly understand what's going on with us... maybe then they'd "get it" better. Maybe then they'd know better what we need from them.
At least now we have each other... not optimum because we're all spread out, but better than not having anyone who understands at all.
Sara
You're hanging from the end of your rope, and we all understand why. If you start to slip, YELL, like tonight. We're all here to grab you.
I know that with fibro and RLS it was like a double-whammy, but heck, you're working on like fourple- or fipple- whammies about now. With the rash and the personal stuff and just being EXHAUSTED! It's amazing to me you're hanging in as well as you are!
As for "looking for attention"... the thing is, OF COURSE we wouldn't, but I think people really DO sometimes think that's what we're doing. Like we're making a big deal out of something small to get sympathy or attention or whatever. I know people who take small ailments and obsess about them... or just blow them out of proportion... and they ARE looking for something.
ALL we're looking for is RELIEF and HELP and CONSIDERATION. From doctors, from family, from friends. And I don't think that's much to ask. If you've gotten such rotten sleep (when you get any at all), that you're dozing off at dinner, you or anyone else oughtn't be embarrassed... it's cause for CONCERN, it's an indication of a serious on-going problem that needs improvement, if not resolution. At the VERY least , it ought to "buy" you some consideration and some "slack". You aren't exaggerating this is consuming and threatening your entire life!
If our loved ones and friends don't know what to do to help, I understand. But it doesn't change the situation we and they have to deal with. Wish we could do the old "Vulcan mind-meld" on them, or play brain-tapes like in the 80s movie "Brainstorm", so that they would clearly understand what's going on with us... maybe then they'd "get it" better. Maybe then they'd know better what we need from them.
At least now we have each other... not optimum because we're all spread out, but better than not having anyone who understands at all.
Sara
Hi Sara
It's Jan
I feel like I ought to respond, but I don't know what to say. Thank you. I try, I really try, to be happy and so forth, so I won't be abled "depressed" again! I'm not, you know. I feel likeI'm o teh edge of a very high mountain and I'm hanging on with my fingertips.
My husband came in to the offie a few minutes ago and, trying to show his concern (which he IS concerned), he said he "understood" because when he had tendonitis, his feet hurt all the time. It helped him to just not think about it. That was his advice--I should not think about "it". I wish it were that easy, don't you? I'm not thinking about it--I don't have to, because it never leaves me alone, NEVER.
I was typing my Quality of Life statement this morning, just about ready to copy and paste, and somthing happened--I lost it. I've got to quit. I just about fell out of my chair!
Love you Sara
I feel like I ought to respond, but I don't know what to say. Thank you. I try, I really try, to be happy and so forth, so I won't be abled "depressed" again! I'm not, you know. I feel likeI'm o teh edge of a very high mountain and I'm hanging on with my fingertips.
My husband came in to the offie a few minutes ago and, trying to show his concern (which he IS concerned), he said he "understood" because when he had tendonitis, his feet hurt all the time. It helped him to just not think about it. That was his advice--I should not think about "it". I wish it were that easy, don't you? I'm not thinking about it--I don't have to, because it never leaves me alone, NEVER.
I was typing my Quality of Life statement this morning, just about ready to copy and paste, and somthing happened--I lost it. I've got to quit. I just about fell out of my chair!
Love you Sara
No one is alone who had friends.
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ViewsAskew
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Jan, I don't know what to say. Trying to be happy when you're going through what you are is like trying to be a dog when you're a cat! Be what you are and honor those feelings, even if they are sad or angry or other things that we sometimes think aren't 'good.'
Oh, I sure do wish it were that easy, to just not think about it. Acceptance and quiet and calm during an attack is evasive and elusive as the RLS is pervasive and insidious.
I wish you some calm and quiet. Some peace. Some moments of rest. Enough to carry you through to the next place where you will be heard, listened to and helped.
Ann
Oh, I sure do wish it were that easy, to just not think about it. Acceptance and quiet and calm during an attack is evasive and elusive as the RLS is pervasive and insidious.
I wish you some calm and quiet. Some peace. Some moments of rest. Enough to carry you through to the next place where you will be heard, listened to and helped.
Ann