Feeling All Alone

[lexique]

I've been a bit of a wall flower for some time now but tonight I am feeling a desperate need to vent, and to hear that I'm not alone in this.

I made the mistake of 'admitting' to someone that I had RLS. I feel so wrong saying admitting, like I should be ashamed of this or something, but based on the reaction I got it seems like the best word. It's the first time I've told anyone, besides my boyfriend, and I can't believe how little I was made to feel.

I'm in school training to be a primary care paramedic so you would think that people have some level of understanding and sensitivity about medical things, but apparently not when it's called RLS. I'm always tired, and I'm usually really good at covering it up when it matters, but the last two weeks I've been all but falling asleep every break we get. My legs have gone just nuts and nothing I do is allowing me to sleep. I don't complain, I know it sucks, but it could be a whole lot worse, I'm managing, I'm just really tired. No big deal. We're all students who just study too much and don't sleep enough and I've been fine hiding under that pretense as it is at least partly true.

Today we had a guest instructor which is usually no big deal. As we were regrouping after lunch he asked if I was feeling alright. My standard response, "yeah, just a little tired" (which was true as I was actually feeling really good for me today). "Well why are you so tired?" Again, standard response, "I just have a hard time sleeping at night." "Well why?" "I just don't sleep well." "Have you ever seen a doctor?" Now this is where I got thrown off as anyone else who has asked has let the convorsation go the second or third time I tell them I don't sleep well. I didn't have a canned response for this questions so I answered honestly. "Yes." "Well..." "Well what?" "Well what did they say?" "That I have RLS." "RLS?" "Yes, RLS." "What's that?" And I proceeded into a 10+ minute discussion about what rls is and how it affects people. They seemed to want to know and I figured I might as well explain. Who knows, maybe we'll have a patient with RLS one day and it will be once more medical condition that we are all educated about. I should note that this conversation was happening as everyone was coming back from lunch. By the time I finally got up and walked out of the room I fell like a little kid being picked on on the playground.

This isn't something that we can control or that any of us choose to have, but we do, and we deal with it the best we know how. To be made feel so small and insignificant for something like that just isn't sitting well tonight.

We're a class of 15 and I thought that these people were some of my best friends and not a one stood up for me, or encouraged the conversation to be dropped or anything or the sort. I know I'm not, but I'm feeling so desperately lost and alone of this one. I just need someone to assure me that I am not alone in this.

Thanks for actually making it to the end of this. That alone tells me that there are people out here who care.

Lex.

[Betty/WV]

Hi Lex: You are definitely not alone. There are so many RLSers out there. I know how you feel. I have not told to many people why I am so tired and don't sleep, until recently. But of course for so long I didn't know what was wrong with me. But family and friends still don't understand and look at me strange. When I found this forum and started "venting", it made me feel better. To read of others experiences with this evil RLS. And to put in my thoughts, and sometimes to encourage others not to give up, but to keep fighting.

And to find out how others deal with this RLS. The meds. they take, what helps and what doesn't. Of course we all have different symptoms, and different meds. But there still is a similarity.

The important thing is that we are not alone. And the truth about RLS is getting out there. The RLS Foundation is a wonderful help for us. There is a doctor who used to be on the Foundation, he is in Downey, Calif. and believe it or not. You can email him and he will answer you. I had a couple questions and I emailed him and he answered, one time within 4 hours. His name is Dr. Mark Buchfuhrer and his email is somno@earthlink.net. I have read one of his books "Restless legs syndrome, and coping with your sleepless nights." ANd just received another one of his books that I ordered from Amazon.com.

Read everything you can on this site. A wealth of information. It will make you feel better.

Wishing you the VERY best. And hope you will let me hear how you are doing.

BETTY/WV

[lexique]

Thanks so much for the reply Betty.

I have been around the site for a few months now and do enjoy reading everything that everyone has to offer. A wonderful wealth of information and support indeed.

As soon as I left class I came home and on to the site. I haven't been on in a couple of weeks and I didn't realize how much I missed just reading, and knowing there are others out there who face the same daily struggles. Sad that we must all be here, but nice to know that we are not alone.

[SquirmingSusan]

Hi Lex. Welcome to the forum. So sorry you felt badly today about having this condition. It sounds like the guest instructor is one of those people who just don't get a hint, and don't respect personal boundaries. It can be quite difficult to tell people like that to bugger off, or to gracefully change the subject. I'm not good at that, and I invariably say too much and then regret it later. But I don't regret it enough to really worry about it, though.

I guess I don't understand why you felt badly, though. Did anyone openly ridicule you about the RLS? Were they laughing at you? Likely some of them will have learned something about it from your explanation. Sometimes it just takes time to get over the initial reaction to the name of the disorder. And it sounds like you're all young, and maybe most of the group hasn't learned to think for themselves enough to buck the group and support you. Gosh, I would think that in a group of people learning to be paramedics that they would require a bit of independent thought and compassion for others!

Yes, this condition really sucks. It takes it's toll in every area of life, and most of us can really feel like crap a lot of the time. And it's an invisible condition so it's hard for others to really understand. I belong to another forum called http://www.butyoudontlooksick.com The title of that forum really does describe the reaction we get - but you don't look sick!

And then there's all the people who will just say, "well, just go to sleep if you're tired.":roll:

You're among friends/family here. We all get it. So sorry you're suffering with this. But don't let anyone make you feel bad about it. You didn't chose this, and it's not some kind of moral failing or punishment for sins in a past life or whatever. Who was it that said "No one can make you feel inferior without your consent."?

I hope this makes some sense. I only had 2 hours of sleep myself last night, so the brain isn't working so well.

Best wishes with it. Feel free to vent anytime you want.

[Neco]

I have to admit I don't understand why you are upset either.. Although your personal space seems to have been invaded, you didn't seem to indicate that people were laughing at you, or anything, and it sounds more like you just unwillingly became a class lesson, than a subject for ridicule..

However, don't feel bad about having RLS.. If people have a problem with it, tell them to stuff it and walk away.


Your problems with sleep are concerning though.. Clearly you have seen a doctor and been diagnosed, but you didn't mention anything about treatment?

Are you receiving ANY medication at all? If not, why ?

[ViewsAskew]

Lex, I am sure you'll be back to offer more info to Susan and Zach, but I think I can put myself in your shoes and feel intimidated at the least, misunderstood, not validated, and completely missing any compassion from the group you thought cared for you in a greater way.

Constant questions can make us feel defensive - When, what, why, how, but why didn't you, etc. etc. starts to feel like an interrogation, even if the person(s) asking don't mean it that way. And, it's REALLY hard to stop them and redirect. Either to gently move the conversation away to something else, or to move it to a "teaching" conversation about how paramedics need to be aware of how drugs or restraint could affect someone with severe RLS, or whatever.

When I first took a mediation course, we learned a technique called "reality testing." You use it to help the party look at things from other perspectives. I instantly HATED this technique. OK, that's too strong, but I instantly recognized that this is what one of my friends does when I call and complain. She says,"Oh, so what did you intend to happen when you X?" Or, "How do you think Bob felt when you said X." Etc.

I never felt she just allowed me to complain, lol. I wanted this response, "Oh, crud, that really sucks that he said that," or, "I imagine how upset you were. That sounds awful."

I think my point, if there is one, is simply that we each expect different responses when we are in a situation like this. Sometimes people, like my friend, think they are responding in a way that is helpful, but sometimes it's not. It's possible, as Susan said, that they just didn't know how to help or what to say. They didn't know how to make it better for you.

I definitely agree with Susan...I bet at least some of them walked away with more knowledge and compassion about RLS...even if they didn't show it to you.

I am sorry you had to feel badly. We each have a comfort level and this one violated yours. None of us like to feel that way.

[Sojourner]

l, I feel a bit differently than the others on at least on one point. I think it was rude, insensitive, and inappropriate for a "guest" instructor or any instructor to give you what, in my opinion, was, at worst, the third degree and, at best, being over-inquisitive. Quite frankly, being an "instructor" would, seem to me, that this person should have known better than to keep "prodding." Hindsight tells me that saying something like "I'd rather not talk about this now but would be happy to talk about it after class if you feel you need more information." Or, something to that effect. But, that's hindsight and in my opinion you didn't deserve it. Now, I don't know if your regular instructor(s) is aware of your rls and its effect on you but perhaps it may be worth considering talking to them confidentially about it. I'm guessing that can only have some positive benefit--unless you somehow feel it would endanger your schooling.

I certainly agree that none of us should ever be ashamed of suffering this disease. But, we all handle it differently. And, there's no shame in that.

Best wishes, M.

[dogeyed]

Hi Lex,
Oh, I know exactly how you feel, too. I also find myself feeling really upset when folks don't "get it" about myself being a sick person. Eventually I realize, as Sojourner suggested, some are just curious. Others have no sense or good manners, and then there's those who won't take you at face value just becuz you're not missing an arm. Even worse yet is a person in authority who will dismiss you at the drop of a hat if you don't perform 100 percent all the time.

That last thing, I remember years ago I had dreadful mental and physical problems on account of a bad car wreck I was in. Every now and then, I would go to a psychologist for a few visits in a row, and so I had to tell my new employer at the time that I would need to take time off for some mental health appointments. She seemed perfectly okay about it. BUT after a couple weeks, she fired me, even tho I was doing a perfectly okay job. I'm no idiot, you know, real well trained, couple degrees, all that jazz. Discrimination, don't you know.

I have another difficulty to this day with relatives, they think my problems are nonexistent, and time and again I've had to explain myself, which makes me break out in a sweat and feel like I'm lying, on account of if my own blood kin won't accept my illness. I've heard others here in the forum get upset when their friends get miffed when they cannot go on a road trip with them because their legs seize up in a car.

About all I can tell you in the way of direct support to this particular incident is, everyone will forget this thing in your class. I mean, if you threw up in class, folks might remember you! Just go about being yourself right on down the line, and all will return to normal. And I like Sojourner's advice for future face-downs, maybe ask to talk about it later at lunch or whatever, and excuse yourself, "I have to go now." Also, you need to talk to your general doc about something to help you sleep better on the weekends or something, be it a mild pain killer or whatever.

And in case you're a little worried about having RLS affecting your future work acceptance as a medical professional, you may do what I have done since my own story of work-related misfortune, and that is: Don't tell anybody what you got! If you are tired a lot, just come up with an excuse... it's okay to tell a white lie, it's okay to be evasive, it's okay to leave it out. The only time you gotta tell the whole truth is on the witness stand. Don't put yourself on a witness stand if you feel uncomfortable in a situation... instead back out of it real quick. I mean, we're only human.

Of course, Zach's method takes care of the whole thing, just say, "Buzz off, son, I got things to do besides yammer with you." Hahahaha. Gosh, I wish he were my personal assistant, I'd take him everywhere I go.
GG

[Neco]

I need a job!

[Scarlett46]

Oh, I totally know what you mean. Even if they didn't direct nasty comments to you... You just get that feeling, don't you?

I don't talk about it. Only here. Not even with my family and friends.
Whenever I mention it, I "feel" this attitude - that people think I'm just coming up with an excuse for some inadequacy.

With me, it's not insomnia - it's lack of quality sleep. So there's a problem there too... "You sleep so freaking much! How can you still be tired???"

Ok... sorry I think I just ranted on a tangent a bit there...


I do agree that it was inappropriate of the instructor
a. to continue the inquisition to such a level, and
b. to do so in front of the entire class!!!

[Metabolic wreck]

Lex, I'm a little confused...why do you feel badly about having RLS? Or about dealing with insomnia? It's not something to be ashamed of--I mean, if any of us could make it go away, I'm sure we would. We definitely don't choose this agony!

Just remember that people who would choose to look at you as something less are obviously ignorant of the disease.

I understand that they're out there--I have some close friends who think they're being helpful when I'm having some problem or another, and they say "Oh, I do that all the time" Obviously not, since they don't have my medical condition, but they think they are being helpful. I try to just bite my tongue and remember that they don't know. They can't, without experiencing it.

Actually, there are times when I wish my husband could feel what RLS is like, just for a half hour or so. I bet he'd never again say "quit doing that!" Sorry, I digress.

Anyway, I guess my message is, tell yourself, they are the ones that don't know. You are the one who knows. Do what you need for yourself, and sc*** them!

Metabolic Wreck

[lexique]

I guess I didn't explain the situation well in my first post which is nothing new for me. I'm not good at putting my thoughts into words for others which is why I read the posts without ever posting myself.

If I'd been smart I would go with you Zach and told them where to put it, but that's didn't occur to me at the time.

I don't feel bad about having RLS and I am certainly not ashamed of it if that is how it came across, I guess I'm frustrated by how ignorant some people were. I didn't expect them to know anything about RLS, I certainly didn't before this site, but when you get the same questions time and time again because no one is really listening to the answers they're just smiling and nodding to be polite it's a little frustrating. Especially when some of those people work in this field already. Or maybe I'm just overly sensitive from lack of sleep and other life stresses, that's a definite possibility too.

I'm sure there were people who did actually listen and care and I hope that they are at least a little bit more educated, it just seemed like they were fewer than those who didn't, and going into the field that we are going into that is more than a little bit disheartening.



Zach, you asked about treatments and right now you're right, I'm not doing much, at least not with meds. I am trying to educate myself and monitor my lifestyle in an effort to determine some of my triggers and so I can reduce those before I start relying on meds. In all honestly I'm terrified to think that I might need to rely on drugs to live my life one day.

I haven't been given an official diagnosis, just a "well that sounds like it might be RLS" from my old doc, and that was in June of last year. Note I say old doc because she wasn't willing to actually make a diagnosis, just insisted that I start taking Sinemet which she couldn't tell me anything about. I took the rx but did my own research before ever filling it and based on what I read I concluded that it was not something that I wanted to be on, at least not before doing more research into other options. On my return visit she refused to consider anything else, and yes, I did bring her the Mayo Algorithm that I got from the site and I got nothing for a response. At that point I began my search for someone else, which has been made more challenging as I have moved twice since then, most recently to a small town with one doctor within two hours and he is less than useless.

Anyway, I feel like this is turning into a ***** fest which was not the true intention of this post. Perhaps I've clarified things, or perhaps I've just made myself seem even more foolish, either way...

[ViewsAskew]

You didn't sound foolish at all. I hope none of our responses inferred that.

Per communicating via writing on the Internet....if I had a dollar for each time something I wrote was either written poorly by me or simply misread by someone else, or meanings were attributed that weren't there, or I said something but meant something else, etc.....well, I'd have a LOT of dollars! We're tired. We're typing at 3 AM. Our brains aren't functioning on all cylinders. We have other problems, too. I am often surprised that we don't fight all the time and have nothing but miscommunication after miscommunication. It's easy to read into things - on both sides. It's easy to think you explained something only to realize you left out part of it. It's easy to read it thinking you understood it, having missed an important part.

I am always saddened when someone feels that the pain/discomfort of using this medium to communicate is stronger than the benefit derived. I understand it...I just wish it weren't so or that there were ways to help people to make it easier as I don't ever want anyone to feel left out.

Per the doc thing - that is a really tough situation. My only potential advice - and it may not work based on who is close to you - is to forget RLS educated docs and look for the following characteristics: open to new ideas, compassionate, listens well, not needing to be right or the boss. Those doctors can easily be shown the right info and can learn to help you as well if not better than the so called experts. You did your part with the last doc and did it well, it sounds like.

Overly sensitive from lack of sleep and other stuff? I've been there and will probably continue to be there. For whatever reason, some of us just seem to be more easily bothered by what people say...or don't say...than others. I won't say it's not a worthy goal to try to be different - I've been working on it for years. And, after 20 years of cognizant effort, I actually have had some success. But, it still sneaks up on me sometimes and I have to take a deep breath and let it go. I'm human and some things are just harder to change than others. Doesn't mean I'm a bad person...I just annoy some people more than others, lol.

[Aiken]

Lex--

I agree with your feeling that discussing your RLS in a group setting isn't comfortable, and I avoid anything like that. I don't think anything bad really happens in those situations, but yeah, it's pretty uncomfortable to be sitting or standing with a group and wondering what they're all thinking, or wondering if they understand what you're explaining. One-on-one, you can get a much better feeling for it, and you can make sure you're being understood.

Honestly, telling other people is a mixed bag.

A lot of the time, I can tell the other person means to understand me, but really just doesn't get it. It's not their fault, really. It's damned difficult to explain this thing, and if they've never had anything like it, not even growing pains or a bad fever, they have nothing to draw on. Still, it's nice of them to try, and at least at some level, they understand my life isn't going the way I'd like it to be.

Sometimes someone gets it and shows genuine interest, probably just because they like to learn and/or want to understand my problem a little better. That's always nice.

The best times are when I explain it to someone and their eyes go wide. I can totally see there's a "Wow, *I* have that!" coming. Then I get to offer them some useful info and maybe help them find some relief. That's rewarding, for both of us. So far, I've run into three people at work who didn't know what RLS was, but once they described theirs to me, I knew they had it. I've met a couple outside of work as well. I still don't generally go openly advertising my RLS, but when the subject comes up, at least this makes it worth the bother sometimes.

But yeah, next time it comes up, just take the other person to a more private area before continuing. Nobody would expect someone to discuss their colitis, their eczema, their yeast infection, their enlarged prostate, etc. etc. etc., in the middle of a classroom, and there's no reason why you should have to discuss your malady there either.

[Metabolic wreck]

I just wrote a long eloquent post, complimenting Aiken and apologizing to Lex, and then I hit a wrong button, somehow, and it disappeared.

So, Aiken, a very astute observation, and

Lex, I'm sorry if I came across as insensitive--I was just trying to understand.

I LOVE computers!!

The Wreck