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Posted: Mon Jun 15, 2009 11:45 pm
by SquirmingSusan
It used to be that when people asked me "how are you?" that I would launch into a long, sad story about all the misery in my life. I would just wear people out with it, because no matter what was happening with me, I always thought things should be better. Every now and then someone would ask me "Would you like some cheese with your whine?" or in some other way point out to me what I was doing. 8) At some point I got tired of listening to myself, too.

In the personality system that I like the most, I am the type that is seemingly the most happy. We act happy all the time, and have what is called by some, a "perma grin." The problem is that we always think that happiness is out there somewhere, and we'll we happy "when" this, that or the other thing happens. So we spend out lives planning for when we're going to be happy. It's been a tough lesson to learn that happiness is not out there somewhere, but has to come from within, and to learn to be content with what is, versus waiting for a time when we will be happy. So I've had to learn to focus on being happy about what is good in life, instead of focusing on what is wrong. And with that change of focus I've been able to not talk so much to others about my misery.

I'm one that really likes attention, too. It's really easy for me to dominate a conversation and talk about myself, to the point of never getting around to asking the other person how he or she is. Being a minister, I've really had to work on that as well. Once in a while I can actually keep the conversation directed at the other person, and listen to what they are saying, without bringing the conversation back to me. It's really a good skill to be able to deflect the conversation onto other people.

There are a couple specific things that help me in not talking so much about my ills to people who don't want to hear about it. One is having a dedicated support group; a place to go where I know that people will understand and will listen with empathy, at least most of the time.

Another is to get out and do things - try a new restaurant, go to the latest movies, or even watch a new TV show. Then I'll have something to talk about other than my lack of sleep and pain.

I've actually threatened my family that I'm going to hire someone to come into our home and teach us how to hold conversations with each other. My husband likes to ramble on and doesn't notice when no one is listening, and he rarely hears what anyone else says. My son does similarly, but puts a lot more energy into it. He'll go on and on about computer games. And then there's my daughter with Asperger's who just doesn't do small talk. I swing between how she communicates and how my son communicates. Sometimes I can get engaged in the conversation that's going on and sometimes I'd rather not. But I do think that learning to engage in conversation with people is a learned skill that can be practiced, and that we can all improve in the areas of listening and watching nonverbal cues.

Well, it's time for dinner. I hope some of this makes sense to somebody.


Posted: Tue Jun 16, 2009 3:53 am
by Johnny2
Sorry to hear that Helen, I think I know how you feel, my wife I believe is
actually starting to hate me for having rls and I'm pretty sure she thinks its a minor inconvenience thats mostly in my head. She actually gets pissed when I talk about being a little tired and has to trump it with something. nice! thankfully we have each other here :)

Posted: Tue Jun 16, 2009 1:03 pm
by Helen518
Johnny, I am so sorry to hear that. It must feel awful. If people only understood how awful it feels. My Psychiatrist has experienced it a few times and so it very empathetic. My husband, initially, could not understand how it could cause so much discomfort. He gets it now, but only to a degree.
I am glad you are able to come to the RLS message board to find folks who understand you.

anyone been told they talk 2 much about illness

Posted: Sun Jul 04, 2010 3:37 pm
by Gaely
All the time...I least that is how I perceive it. I hvae bipolar disroder (fairly unstable), COPD and RLS. Any any given day at least one fo those come up...whether I am acting"crazy", having trouble breathing because it is humid out or a new change in RLS medication is driving up the wall. Thing is the family REALLY rather not hear about it...I don't blame them in the least. My problem is I keep going back to the very people who have shown me over and over that they are incapable of supporting me and am left with hurt feelings or frustration. I do write in a journal which helps immensingly, but there are days especially when all 3 of the illnesses are acting up at once, I need to talk, because I am scared. My family can't get it thru their heads that I just need to vent and they do not have to fix it (yeah, I live with all guys). I mean, I get sick of talking about it, thinking about it,etc, so I know where they are coming from. My biggest frustration with myself is a keep going back to the people who have demontrated over an over that they don't want to hear it. I don't know how to stop that. Being on a message board helps, esp with RLS. Being bipolar has a stigma that make talking to your average person or friend very hard to be open about. And the COPD is just too plain scarey to discuss. I do see a professinal fact that is what I do for a living, a marriage counselor. I don't know...I have defnitely cut down on what I tell my family...that helps, but then sometimes I think I will pop holding everthing inside. Not talking has it's drawbacks, too. For instance, my DH went to my nuerologist appointment with me. I told him that I seemed to be sleepwalking a lot since I went on Reqip, myDH says "no she isn'.....because I hadn't talked to him about it and the doc is like "well, which is ti?" Upshot..the doc believed me, took me off requip (wean me off) and put me on methadone. The definition of insanity si when you keep doing the ame thing over and over, expecting different reults. That' where I feel I am at. How do others deal with this?

Posted: Sun Jul 04, 2010 4:40 pm
by badnights
Helen, one thing the others mentioned that I'd like to emphasize is to use this board to discuss the ins and outs of your illness and treatment. That way you get it off your chest and avoid the need to talk about it with others.

I wish I had a magic way to make other people understanrd, without the need for explanation, what was happening with me, but instead I accept the fact that some people MAY (I don't really know) think I'm a malingerer, others avoid talking to me at all because illness scares them (yes! I was shocked to learn there are people like that - my SIL), others ask awkward questions that don't have pat answers.

I have a few handy statements handy in my brain, like "I read in a book on RLS, written by a doctor who treats it, that people with multiple illnesses including RLS - like, one lady had cancer and heart disease and diabetes and even more things - they mostly think RLS is worse than all the others put together" and "The biggest problem with having a movement disorder that affects your sleep is the loss of your ability to think and be a normal person during the day; a psychiatrist I know said that lack of sleep can cause the symptoms of all the major psychiatric disorders (neuroses and even psychoses). And of course it puts you at risk for cardiovascular disease" You would want to develop some statements that are relevant to your own situation. I use these to give people an introduction to the fact that RLS is a serious and debilitating disorder for many of us, and that is is accepted as such by the part of the medical profession in the know. And I leave it at that and don't get into it more unless they ask. So far the only people who have asked to know more are my parents and one of my brothers (altho both of them have it!). It sort of hurts when you want people to understand, but they have to want to understand first, otherwise it's no use.

Takling too much about illness when they don't want to hear

Posted: Sun Jul 04, 2010 6:45 pm
by Gaely
I think I am slowly cathing on from all your comments. I know without a doubt I need to establish some "safe" people (this messgae board being one avnue). For whatever reason, I used to take it personally, myDH is not on the safe list....he can't be, he doesn't know how. Y ou know, I have bippolar disroder ( which has made my life "interesting", COPD and RLS. If by chnace I could get rid of just one, it would be the RLS. I guess that is why the bulletin board is so important, because at least you guys understnad how very desperate if can make you. My doc just switched me from requip tp methadone and there is this panicked little voice, going what if it doesn't work. I am off track... I am listening to all of you and much you said made sense. Think I will hang a sign around ny DH neck that says don't ask me. I think I am going to have to be kicked in the butt a few times before I truly "get it"

Posted: Sun Jul 04, 2010 7:54 pm
by Betty/WV
Interesting posts!!! For so long no one listened to me about my RLS, for a long time I didn't know what was wrong with me. When I don't sleep all night, time after time, no one understands what this does to me. I think they thought I was crazy (I thought so to for a while). And then you go to a doctor and tell him you have RLS and they get this quirky smile and make comments, like this one doctor did to me, he said, "Where did you hear about that??? On Oprah Winfrey. So you continue to suffer day after day, night after night. I got to the point that I hated to see night come.

Then one night, around 3 am, walking the floor, crying. Because I was so tired and yet couldnt sleep. Standing up, using the computer I came across And read some of the posts. I was amazed, here are people like me. So I started venting to these strangers and typed this long post. It felt so good to get it all out. Then they started repling, and they understood what I was dealing with. Then I felt even better, maybe I'm not crazy. So I've been here ever since. I think around 5 years.

I'm doing better because I'm on Mirapex. And I learned so much from all of you dear rlsers. And I'm still venting. And I feel better being able to talk to ones who understand.

Thanks to all of you who have "listened" to me, and encouraged me, and I hope I can return what you have done to others.


Do you talk too muvh sbout your illness?

Posted: Mon Jul 05, 2010 1:54 am
by Gaely
I do not tlak too much to my adult children (ages 23 & 34) Expect when I bipolar kciks into high gear and then I talk none stop!! I fill up their voice mail boxes with none stop messages. They just tell me to get my meds adjustd. But I only have one support person to tslk sbout RLS or my fears fo COPD.] I ylaked to my DH this morning and told him we needed to figure out what was too much for him and when I needed to shut my mouth That it wasn't fair that he tkae the full burden of support. I wanted to set boundaries for both of. Because being chronically ill can rat both you and your partner alive, I was really proud fo myself for acting so sane. He basically said to tell the truth, he didn;t know how to be a support erson and really was just tired of bein cast into that role. To be fair before RLS (which a lot of psychaitic drugs make wrose), he had to condend with the biolar end of it. I think he is bone tired. Hopefully this board will take some of the stress he feels and offer the support I nnedanway, my DH walked out at is now 10:00pm and he is not answering his cell pnone. I just hope he is trying to take time to sort things out, I feel quite sad right now. Thanks for listening to vent

Posted: Mon Jul 05, 2010 5:23 am
by ViewsAskew
Gaely, I wish I had NO idea what you're talking about....but, I do.

Just two days ago, I did exactly the same thing: had some stuff going on, DH was there, I vented, and he first said, "Why are you so upset?" followed by, "So why don't you just do [insert his solution]."

During the cry on the deck, I realized I'd done it again. After ten years, I should know better, shouldn't I? There are some people who I can vent to, and some I can't. He's not in the can category! He is wonderful in many ways, but in this way, we just aren't very similar.

Why do I do it? Because he's a good friend in many ways and I think all friends do this well, because he was here and someone who is good at supporting me wasn't, because sometimes he does a reasonable job and in get intermittent reinforcement. I'm not sure.

I just know I keep trying it and it rarely works.

I do find that having others is essential. This board is part of that, but I'm lucky that my family all gets it - they all have RLS. Hubby has RLS, too, so if I'm venting about RLS, I can go to him (just not other stuff, lol). But, I think you made a very important point - it is a lot to put on one person, that they need more than us being wrapped up in whatever our conditions are at the same time we need them to be there for us. It sets up a very sticky situation where someone is likely not going to get their needs met.

Posted: Mon Jul 05, 2010 6:22 pm
by dogeyed
I'd like to add another little bit to this thread. The thing about talking about health issues endlessly and all, well, about six months ago, I happened across some old emails I had saved from about five years ago, and DO YOU KNOW it sounded EXACTLY like my emails sound now, "Well, it's been tough this year, back and legs hurt all the time, really miss our old house, worried about the dogs getting old," and on it goes. I'm amazed I still have any friends at all! I make an exception, tho... if it's Mother's Day, I ask her about what she's been doing and talk less, and if my husband doesn't feel good, I try to be quiet and occasionally see if he needs a refill on his Coca-Cola. I wish I could be that way all the time, but I haven't noticed anybody around me doing that. Sigh.

Posted: Tue Jul 06, 2010 11:41 pm
by Polar Bear
I feel such a connection with this thread.

For many years I have coped with rls 24/7 but (bit but !!) otherwise have had excellent health.

4 weeks ago I was diagnosed with Temporal Arteritis/GCA which was a medical emergency and started on a heavy daily dose of steroids which have worked well and tho the reduction of the steroid has begun it will take about 6 months to very slowly reduce.

Last week I had two episodes of chest pain and ended up in hospital emergency, had all the tests which came up clear. Hosp Doc reckons it is angina (tho not on exertion), but just a very slim chance that it could be the effects of the steroid on my stomach (tho why would the pain then have gone up as far as my jaw). I am being referred to the Rapid Access Chest Pain Clinic.

I disappear from our bedroom to walk about, do all sorts, cope with the normal insomnia plus the steroid insomnia and manage on about 2 hours sleep nightly.

My DH never complains, just as I would never complain about his having diabetes.

So why do I feel bad about having first of all the rls for 30 years, then the Temporal Arteritis, and now the chest pain, the latter two happening with in 4 weeks of each other.

I am tired of talking about ill health, I don't want to be a bore. But I am dealing with 3 conditions.

Friends have told me to get off the internet which is where I find my knowledge. They reckon the internet is full of extremes and horror stories. I tell them I don't go seeking horror stories, I seek information which is generally on accredited medical sites which has enabled me to argue my corner with my GP. for instance, he did not want to give me the weekly calcium pill for osteoporosis protection even tho I had a hysterectomy at aged 39 and have never been on HRT, and I'm now 61. All the sites on the steroid states that the calcium must be commenced when a steroid is taken long term.

So if DH doesn't complain ..... what is my problem !!

I reckon - I don't want to be a nuisance, and I feel it may have something to do with not wanting to be bore nowadays or a burden in the future - When asked how I am doing - I just want to answer - I'm grand.

Certainly I try to be more attentive to others and older people and their poor health, and I ask how they are and really show that I am interested cos I may be the only person they can talk with who may appear interested.

Does this make sense..... am I rambling.
Cos I've already had sleep meds - but no sleep.

Posted: Wed Jul 07, 2010 3:43 pm
by Scarlett46
PB, I feel the same way... and hear the same warnings from friends and family.

My DH thinks I am a hypochondriac because I read too much on the internet. He doesn't understand that I read about problems that already exist - to become more knowledgeable about them. I don't invent problems from the things I read!

So in general, I keep my mouth shut. But that can be a bad thing too... When I finally get fed up enough to see the doctor about something, nobody has heard about it, so they think it's "all of the sudden" which feeds their belief that it's just because I read too much about this stuff. I do feel that my attitude has declined in the past few years... I used to always be the positive, sunny, look on the bright side of things. Now I feel like the only time I post, or speak up is when I have something to complain about...

Posted: Wed Jul 07, 2010 3:55 pm
by badnights
Poor Polar Bear. I can tell from your posts that you're not quite yourself. Maybe you're afraid that other people will grow tired of you if you have too many problems, even though you're not complaining to them. But people don't tend to get tired of the people they love :)

It's interesting to see from these posts that too much complaining and too little complaining are both problems, plus, for some listeners, no matter what you say it's a problem. So even if we can achieve the right balance between informing the people around us and not irritating or frustrating them, we still may not be able to please everyone, and shouldn't feel bad about our behavior if it's actually the listener who has a problem.

Posted: Wed Jul 07, 2010 6:30 pm
by Helen518
I started this thread and posted that awful story about my father in law saying that there's no point asking me how I am cuz it's never good. My first feeling up on reading it this morning was that I have come a long way and improved quite a bit. I asked my DH if he agreed. He turned it into a joke but implied that i am no better . .. Guess I can only keep trying.

Posted: Wed Jul 07, 2010 6:45 pm
by Polar Bear
Helen, I think this was a good thread and shows that we generally feel pretty much the same way.

We need to be informative without irritating people, but on a personal level we want understanding and empathy but not pity or impatience.

Yes, it is such a fine line between informing/complaining, and the difference may be the listener...... and of course the listener may listen, but may not hear.