Sometimes. . .

[ViewsAskew]

I was at a business function for the last couple days. It was exhausting and my RLS was not behaving - I was in a hotel room doing mattress gymnastics while so tired I was falling asleep for a few seconds while in relief poses, only to wake up a second or two later, jerked back to reality by a jerk or electrical pulse in my legs. It's my own fault - I didn't take my meds on time and I find they are unforgiving on that point. I also had a cocktail with the group at the reception. Also my fault. While it is no excuse, it was so tempting to have just one glass of wine; I'd had a grueling week getting ready for this, and had spent an inordinate amount of energy that day. I was spent, and I wanted one glass of wine.

In aconversation the morning after my night of RLS gymnastics, one of my colleagues asked how the sleeping was. She and I are close and she understands the difficulties I sometimes have. Another person drifted into our conversation at that time and wanted more info after I told my friend it hadn't been much fun - you all know the drill when someone "new" to you or RLS doesn't understand. I gave the bare bones info, not wanting to share my life with this new person I didn't really know. Not only that, it wasn't the place for me to divulge the vagaries of my sleep schedule. She pressed for more info, I supplied some. When she basically understood it, she said, "Oh, so this isn't really a problem. It's an inconvenience. I mean, you won't die from it or anything."

It's so hard to find a language to explain this condition, isn't it? We all have sighed that RLS is such a poor name for this. I didn't belabor it with her, simply saying that getting a couple hours of sleep a night was quite disabling for me - and I walked away saying I had to get ready to lead the next session. I was so sleepy, I'm not sure how I managed to lead it, but I did. We even finished on time and everyone said they learned something, so I guess even in my dream-like trance I call being awake I had enough neurons firing to do my job, lol. In a way, that makes it worse. As long as I can function even relatively well, people don't think it's any big deal.

Not really a rant or a vent, just a notation on a day in the life of someone sleep deprived who felt terribly misunderstood.

[FidgetBoy]

I'm glad you brought this issue up, Ann... I went to see a dermatologist last week and had a similar conversation. The nurse asked why I was on so many strong "pain" meds and when I said RLS, she looked at me and said "you don't take these for anything else?!". She looked at me like a drug addict so I lied and said I also have back pain. I felt horrible for lying but honestly, I can't take the time to teach every person about my condition. Nobody gets it... they think we should just "walk it off", grin and bear it, maybe even pretend it doesn't exist. I hate feeling ashamed for having RLS just because people think we are all hypochondriacs. Even my parents think I'm crazy. My father told me I should have a "nightcap" before bed and that would solve everything! It's exhausing, and I honestly feel compelled to say "back pain" everytime I get "the look".

[becat]

Good Gosh it must be in the water.
I've had the same conversations 3 times this week. Those that know me, understand and except that I have no problem takling to too many people, BUT!!!
Once with my mother, whom I love greatly, but I swore off of taking about this with her a couple of years ago. It's always a fight or always ends up a fight. You know a good alternative life style could really do some good.
Once with 2 doctors, no two this week. One I did not mind at all educating, the other should know better than I with the exception that he doesn't have RLS.
And the most shocking was mu own hubby. I love with all my heart and I know feels great empathy for me. But i have been on a dead run since mid Aug.....I normally don't have to live in the adult world, because of my career choice or lack of one. I'm just not use to running all the time and can normally sneak in a day off, so to say, once a week for strength purposes. Well I haven't been able to.
he has change his job in the last 3 months and is traveling so often , I have been gone, and so today we planned an us day. yes really just errands and such , but just us.......For the last week solid or more I have not been able to sleep longer than 2-3 hours at a time. We had an early appt. today and then went to lunch, so far so good. Ran our errands, and then I knew all I had to do was make it through the car ride home and freedom would be mine. He decided and had told me that he wanted to go to an out of the way place to get a few things, but I had forgotten. Imagen that! I was silently crushed that I could no longer see the finish line. I mentioned at some point that I was really tired and just was not in focus and he said " I think this running around thing is good for you. It will put you on a schedule again." O thanks hun! Your right all I need is a schedule to knock this thing out. Uufffaaaa
There are just days that no one does or will understand and days none of us are awake or strong enough to care if they do.
Give us some relief and sleep and we all can have new eyes.
thanks Ann I needed that.
Hugs Love and the moon to all
Lynne

[Rubyslipper]

It's a sad thing when you only receive understanding, sympathy or validation of your condition if it is fatal. I spoke at a Rotary meeting this past week ( I was INVITED to speak on RLS) and half the people sat there and yawned. Of course maybe that was because I'm boring but the President of the club is a DJ and just wanted to crack jokes about the name RLS. He did ask some very pertinent questions after I was through though. He aslo asked me if it would be okay to tell a few jokes about RLs on the air. At first I was so mad but then I said go ahead as long as you preceed or end with the information that RLS is a serious disorder and where sufferers can go to get help. He actually did a good job and I think overall it was a plus for getting the information out. I think that's why we HAVE to keep explaining to people about how we suffer, although I get tired of telling people too and having them look at me funny. Luckily, my friends and co-workers take me seriously. I use the analogy frequently about headaches. Can you see a headache? Can you prove to me that you have one? Is there any test that shows a headache? Then it must not be important or serious. If that person happens to have migraines, they sometimes begin to understand what we go through. It's a long road ahead, that's for sure.

[Walking After Midnight]

Hi Ann and everybody else...
When I did a sleep study and started to take my Hydrocodone...I was asked..."You're on Vicodin for WHAT?" and got the "Yeah Right" look. I had a good friend, one that saved my life once, tell me to "just get up and walk around a little, what's the big deal?".
I don't even mention it at work anymore. It's like telling someone you have a blue fingernail.

Anyway Ann...
I'm giving you one of my all time favorite songs ever. Your post just reminded me of it.
I love this song by The Hombres, it just makes me smile everytime I hear it.

The Hombres - Let it All Hang Out

(Spoken)
A preachment, dear friend
You are about to receive on John Barleycorn
Nicotine and the temptations of Eve

No parkin' by the sewer sign
Hot dog, my razors broke
Water drippin' up the spout
But I dont care, let it all hang out

Hangin' from a pine tree by my knees
Sun is shinin' through the shade
Nobody knows what its all about
It's too much, man, let it all hang out

Saw a man walkin' upside down
My T.V.s on the blink
Made Galileo look like a Boy Scout
Sorry 'bout that, let it all hang out

Sleep all day, drive all night
Brain my numb, can't stop now
For sure ain't no doubt
Keep an open mind, let it all hang out

It's rainin' inside a big brown moon
How does that mess you baby up, leg
Eatin' a Reuben sandwich with sauerkraut
Don't stop now, baby, let it all hang out

Let it all hang out
Let it all hang out
Let it all hang out

[jan3213]

I've just got to add my two cents here. After having gone through surgery and a severe kidney infection, I got so sick of explaining over and over and over why I take Mirapex and Clonazepam. Explaining what RLS is---why I HAD to have the drugs. I had the medical alert card, etc. But, Geeze Louise, I was with nurses, CNA's, doctors for TEN DAYS. Thank God I had Lynne with me during the back surgery. And, nothing bad happened. But, I finally did ask one nurse: "Does anyone learn anything about RLS in medical/nursing school?"

I feel for you, Anne. I've worked with people who didn't get it---who thought I was nuts. Lynne, you and I have had conversations about our spouses saying "Why don't you just go to sleep?" Friends don't really get it---families don't really get it until it "hits" them.

This forum is WONDERFUL for that very reason. Ruby, you said everything just right. I don't know WHAT I would do without all of you. Period. End of post!

Jan

[Penguinrocks]

Hi all,

Even then Jannie, families still turn their backs. Making it all up to get attention. I'm 39 years old, this kind of "attention" i don't need or want. And if anyone really knew me, they'd know that attention is the LAST THING that i want. i want to be left in the shadows. i'm much more comfortable there. no one will judge me while i'm there. no one will be shallow with me while i'm there. no one knows that i exsist while i'm there. that is my happy place.

love y'all
Penguin

[jan3213]

Well, Penguin, you're preaching to the choir. You've just talked about the last two to three years of my life. Notice I said "when they finally get it." No, families, don't always help------I KNOW!!!!!!! I've gotten the look from my own family---close family. And, believe it or not, some members still do not know how serious what I've just been through is.

The same things I've said above apply to RLS. And, when I said, when they "get it", I mean when they get RLS.

I'm sorry you're going through a rough time, honey. I don't always get my point across the way i mean to. Could be my brain is fried---could be the meds I'm on right now---could just be me. But, I'm with you, Penguin, all the way.

Love
Jan

[Penguinrocks]

I know you are my Jannie.

You ALL are how I've made it this far. If I hadn't found y'all and this site, I'd have a very heartbroken and alone daughter right now.

I love you all so much!

[doety]

I guess we've all been there. I remember business trips where I was experimenting with various drugs, some worked, others made me crazy. I couldn't hide the fact that I was a zombie and I know people thought I was crazy. And of course, that still happens. But what's been happening more and more lately is understanding -- and it stuns me. After I wrote an article for the paper about my experiences with RLS over the last 20 years, I got an e-mail from someone I know fairly well, saying she's had it for 20 years! The head of a big business organization came over to me and said: My wife has that! I am trying so hard just to say "I have Restless Legs Syndrome" to people when I need to stand and stretch or simply give up on a dinner out. More and more, I'm getting people who understand and I feel like it's a miracle. To my husband, I just say "I have LEGS" and sprint out of the restaurant. We've only known each other 4 years and I know at first I was so humiliated, I couldn't explain it well (but would get mad at him for not understanding). He has ADD, and we've finally concluded that all his symptoms are sort of the equivalent of mine (and he can't sleep either).

I hope so much we all start having better experiences with more understanding people. I like the headache analogy. And I've always wished it was called something different, like the Most Obnoxious and Interfering and Debilitating Stupid Disorder. MOIDSD.

[FidgetBoy]

I like MOIDSD... my version of RLS would be "If you don't give me the aisle seat this is going to be a VERY long plane ride for you" Disorder. (IYDGMTASTIGTBAVLPRFYD for short)

[tazzer]

well i can't type what I tell people to do when they don't believe me! i told lynne I was a very blunt person but it ends with OFF! I have all the sympathy in the world from my mom, because she has the same thing, and so did my grandma, but when they got it there was no name for it. it was assumed it was arthritis. I too think RLS is a stupid name for this. We need to come up with a new one. And all these dopes out there that make fun of it, i would like for them to have it one week solid with no meds of anykind and see how much they would be laughing then! and like you fidge, i sometimes lie just to get other drs off my back why i am taking oxycontin. i tell them i have nerve damage. i am almost tempted to say "if i don't take these meds i have a rare neurological condition that makes me foam at the mouth and bite people, but your safe i took my meds this morning, o by the way what time is it i definately don't want to miss my next dose why i am here with you!!!!" morons! anyhoo just my 2 cents on the ignorant world around us.


dee

[doety]

AND ANOTHER THING. I hate those Requip ads. So, we've taken a step forward and now lots of people have heard of it. So, if you say you have RLS, they say "take a pill." At our local RLS group, we had a clinical pharmacist say, as she started off, that this is a "highly treatable condition." I almost walked out. I thought: Yesh, it's treatable. I've treated it with about a zillion things and have no idea what it's done to my body or my brain.
Yes, sometimes I wish it on certain people, if just for a day (umm, like Bill Maher, who I usually like).

[becat]

I like it when you try to talk to someone about it and you try to explain how hard it is to get treatment or even find a doctor that knows about it.....what I normally hear is something like, well just find another doctor or just take Tylenol PM. OK, Yeah, THANKS.
Last week I did my trial (2 whole days) with Methadone. It was horrible. It took my body 4 days to rid itself of the side effects. One of which was the creepy crawlies ALL over my body. I finally decided to stay awake for the sake of my body so that I did not injure myself worse, while being drugged and ( lol) somewhat asleep. Well, I went to my 4th (?) treatment with the medical acupuncturist. A real MD, but does this old art of medical wonder from China. I told her that I had set myself back so far that we were starting over. She is eager to learn about RLS and is awesome at listening. I say this lovingly, she asked why I didn't just take a bendadryl for the reaction to take care of the itching? Huge sigh, but I did explain it to her, she had no idea. Go Figure? LOL I forgot the stuff today, but I have put together a packet for her, so that she understands how fragile this disorder truely is.
Yes, she is helping me tons. Not only with the pain, but she made me stop itching right then and there. It is not always comfortable, and I hate the needles (tiny, tiny) that she leaves in my ears, hard to sleep on your side. But I am seeing awesome results. This from a woman that became a real MD so that she could fight for herself.....her mother and grandmother suffered lifetimes with Rhuem. Arthritis., at 30 the doctors told her that she would need to start 1000.00 worth of meds a month. She never did and never has needed them. She believes in her eastern medicine and she does a great job for me. I might get one more doc tot understand this. My fingers are crossed.
Hugs Ya'll we can do this I just know that when we teach others we are taking steps forward. Yeah , maybe baby steps but as long as it's forward, I'll take it......for now.

[ariestlt]

one of the things is that a lot of people claim to have RLS but really don't. It's from those people that general society doesn't take the condition seriously. I know people personally that claim to have RLS. My guess is that they don't. They do nothing to help themselves. They smoke, do caffeine 24/7, no vitamins, and no exercise and claim to have RLS. Anyone that spends any time with me knows I have a problem. I don't just get RLS at night, I have it all day long. My legs very seldom stop moving.

And benedryl just makes it worse. I made the mistake about 3 weeks ago of taking some cold medicine. Instead of just being awake, I was awake in tears. I'd rather not breath than deal with that pain. And Tylenol PM is just tylenol with benedryl in it. I don't know about anyone else but I sure don't sleep with it.