Spouses and others don't "get" what RLS is like...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Spouses and others don't "get" what RLS is like...

Post by Sara »

:roll:

I knew a bit about chronic conditions before I figured out that my "foot thing" in the evenings was RLS. I've seen how much toll they take on people's lives, and how unsympathetic (or maybe just unaware!) other people seem to be to that toll.

I'm blessed with the world's best husband, and I know that if things hit real crisis point with RLS (thankfully, I'm not there yet!) he'll step to the plate and take really good care of me in any way he can. But so far, he's been pretty slow on the uptake, and a little bit minimizing about the whole situation.

That's been very hard for me. I used to have very bad, but more intermittent RLS "attacks", and he seemed to understand why I needed to go to bed or walk around or take a shower or whatever for those. But now, I'm having RLS daily, practically alllll day a lot of the days, and although it's milder (or maybe I'm just getting used to this level of discomfort? I'm not sure which), that's quite frustrating and demoralizing.

I'm THANKFUL that I don't have any real pain yet, though sometimes the other sensations are nigh on excrutiating :x (at least until I go to bed-- Thank God I still CAN get relief that way, for the time being!!) But I know that when it comes up with my husband and others, they have NO idea what I'm getting at when I describe what I'm feeling. And looking at it objectively, I can SEE that the description of the sensations (except the biting ants inside your leg, that's an impressive one! :wink: ) just don't SOUND all that formidable.

We all know differently, though. And that's why I'm glad that we've all found one another. It's nice to have the "short-hand" communication that a fellow sufferer can give, instead of ALWAYS having to try to explain, justify, etc.

I think that my husband's starting to get it a little now. I noticed real concern on his face the other night when I excused myself from sitting in the living room and had to head to bed. And thanks to all of you for sharing stories I've told him about what may be ahead for me if my RLS progresses. (Not borrowing trouble, but forewarned is forearmed.) I think that the frequency is helping the situation sink in for my husband... I also think he's learning to see the signs. I think a lot of us probably hide our symptoms pretty well... at least in some situations. But now that I'm REPEATING the same motions to fight the sensations so often, I think he's tuning in and realizing... Wow, she has it AGAIN.

I have heard some of you say your spouses are very helpful, and others don't seem to be. Some friends are sympathetic, and others seem to think it can't be as serious as we make it out to be. Doctors as well seem to vary in their grasp of what RLS can potentially do to us and our lives. But at least we all do have one another to fill in some of those gaps, and to share some of the frustrations that we can't adequately explain to others. :)

Hugs to all and hoping for better nights. (Especially Nadia!!! one hour's NOT enough!!!)
Sara

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Re Spouses and Others don't Get It!

Post by jan3213 »

Hi Sara, it's Jan

Sara, you did such a good job expressing what I feel--I know this is how many of US feel. It's so hard to explain to people, even people who love you, why you have to sleep on the couch because you need to support your back. Or why it takes two hours to accomplish something you use to get done in one hour or less before RLS reared its ugly head. I often wonder about the part in the wedding vows where it says "In sickness and in health"--do those words REALLY mean anything? I know I'm loved, but some people just don't know what to do when they are faced with living with someone with chronic pain or chronic illness, especially if they are used to their loved one being the strong one in the familiy. The thought of becoming a burden to my family is the scariest part of this whole thing. I'm not borrowing trouble, just being "cautiously" realistic. Thanks, Sara!

Jan
No one is alone who had friends.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hi, Jan...

One more thing I wanted to say, but my mind got ahead of my fingers (can you relate to THAT one, Jan? :P )...

There's something so draining (actual loss of sleep and pain and hopelessness levels aside-- though they make this so much WORSE) about seldom or never feeling COMPLETELY 'at rest' or 'at ease'. I think I said this to Becat in my Q of L statement, but maybe not here (or in a while). Not ONLY do RLS sufferers feel uncomfortable and in pain and "restless", we tend to feel that WORST at the time we MOST NEED relief and respite.

There's an idea forming somewhere in the back of my mind that the way to "share" the heart of RLS suffering (and RLS hopelessness) may lie in that scenario.... the how it feels to sit down to rest after a busy day and not be ABLE to sit still and rest.... to feel exhaustion from a sleepless night and not be ABLE to sleep that next night either.... to want to be still and restful and have your body unable to be still and rest.

Maybe somewhere in those types of situation is something others who don't relate to the formicative, crawly, vibrating sensations, etc., can wrap their minds and hearts around??? I know that now that my RLS is so close to constant, THAT is the part, that never being able to fully rest, fully relax now, of
the "chronic" nature of the condition that is most trying and demoralizing to me. And I sleep decently overall, unlike many of you.

Sara

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Hi right back Sara!

You are exactly right, Sara. And, another thing I've just thought of. This is a thought that is JUST forming from a "conversation" I had VERY RECENTLY with a very good friend of mine about a recent occurrance that happened in my own life. RLS effects every aspect of our lives, as we all know. Our family relationships, and our relationships with FRIENDS. Perhaps, because we go without sleep for so long, "friends" may start to look at us differently. Perhaps, and there may be a small grain of truth in this (because as a wise person once told me--there are two sides to every pancake), going without sleep CAN change our personalities, friends may THINK that we are perhaps experiencing some sort of "break down" or depression, when in fact, what we are experiencing is only a side effect of sleep deprivation. I, personally, have not been on top of a building with a machine gun! That would be a "break down". I think some people need to get a grip! However, sleep deprivation DOES change our personalities to some extent and we do become "different" people. But, let's face it folks, MOST people change to some extent over the years. Do you know anyone who is the same now as they were ten years ago? I would hope not!! I hope people grow through experiences. But RLS sufferers DO have a disadvantage--NO SLEEP!!! Let some of these people who say things about us "changing" spend a week in our bodies and see how it feels! I'm not being bitter--As I've said before, we don't have cancer, what we have is not terminal (unless one of us DOES fall asleep at the wheel of a car GOD FORBID!), but, RLS is an awful thing that robs you of a good, healthy lifestyle!!! And, none of us need apologize for feeling that way!!! I'll put my soapbox way now!

Jan
No one is alone who had friends.

cmg61

Spouses and others don't "get" what RLS in like...

Post by cmg61 »

:) Wow, I'm so glad I found this web site. Reading your posts is like therapy!! Now at last I have found people who suffer the same symptoms I do. I was diagnosed about 4 months ago after a "sleep study." My husband has been very understanding thus far - I've had symptoms for 2 years - gradually getting to the point where it was a chore for him to sleep in the same bed with me!!! Most nights I do get out of bed and either walk around the house or get on the couch and I used to feel guilty, but now I don't because at least I know I have a "real" problem and it's not just in my head! The real problem is that I only get about 4 or 5 hours sleep every night. I have a very stressful full time job as a legal assistant and am extremely tired all the time. I don't know how to deal with these feelings of exhaustion and fatigue. Some days I just about fall asleep at my desk!

Thanks - Connie

Guest

Welcome!

Post by Guest »

Hi Connie, it's Jan

Well, we have something in common besides RLS. I was a paralegal for 28 years!! I'm so glad you found us, but so sorry you have RLS!! Welcome, Connie!!! You've found a family!! A home, where you will get lots of support and find many wonderful people who will listen to you and support you in many ways!!! First of all, RLS is the pits, isn't it? Now that that's out of the way, let me suggest a few things! When I first joined, I read as many posts as I could. You'll get a lot of good information, a few laughs, and get to know some of us. We have some members who are great at researching anything you need to know; we have a particular member who is a wonderful man who knows so much about medicines, etc.; and so many of us are willing to share our experiences and lend an ear or a shoulder when you to need to vent. We are a family!!!!

Jan

cmg61
Posts: 17
Joined: Wed Oct 06, 2004 2:03 pm
Location: Independence, KY

Spouse's and others who don't "get" RLS

Post by cmg61 »

Thanks Jan!! I've read a lot of your posts and others and have learned a lot already!

My biggest conern at this point in my life is that I'm so tired all the time and I'm only 43 years old. At times, it takes all the energy I can muster up just to get a shower and drive to work, much less stay there all day and do something productive. I feel like I'm in a haze all the time.

Looking into the future and not even being able to imagine this RLS could get any worse (but I know it will) - I wonder if anyone has ever been successful in getting disability approved for RLS.

I just cannot imagine working for the next 25 years feeling like this.

Connie

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hi, Connie--

and welcome!

I sleep about the same amount as you do now, because although I am blessed to be able to go to sleep in the first place, my RLS is starting to wake me earlier and earlier in the mornings and won't let me fall back asleep.

Thankfully, I work from home and was never a really long sleeper anyway, so I'm not feeling the sleep deprivation too much yet. (Though EVERY afternoon lately, when I'm driving my kids home-- 20 miles-- I notice I get drowsy and have to really concentrate to make sure I'm not allowing my mind to wander. )

But like you, I'm young (39) and my RLS is progressing. I've had it intermittently since my late teens, but in just the last few years the symptoms have gotten more intense and/or more frequent.

The past couple of months it's daily, and although I'm not one to "borrow trouble", I can't HELP but wonder what might be ahead. I've told my husband a bit about the people I've met here, hoping that he'll start to get the idea that this is something that COULD really alter our lives, so the more I learn NOW the better.

I think initially when he heard I was on this board he may have thought it was sort of obsessive, or might become a self-fulfilling prophecy situation-- the more I thought and talked about it the more trouble I'd have. But I'm still taking my RLS as much in stride (no pun intended! :wink: ) as possible, and being positive and keeping my "fighting stance", so I think that worry has subsided for him. :)

He's even offered to help me find a few things that have been suggested as possibly helping, and like I think I said originally, I'm starting to see more understanding in his eyes when I have to excuse myself early in the evening due to RLS. He's a good guy; he'll stand by me when I need him to. But I know he doesn't really understand what's happening. The good news is that he KNOWS I'm not a complainer by nature, so if I'm commenting on my RLS at all, it must be REALLY bothering me. At least I get that benefit of the doubt. I know not everyone here does.

Good luck and passable amounts of sleep to you (and Jan, too!) :wink:
Sara

kelbel
Posts: 10
Joined: Wed Sep 22, 2004 12:00 am

Post by kelbel »

Well, after reading this series of posts, I have decided that perhaps I have been having symptoms for a long time, but just never realized it until my legs started jerking within the last couple of months. I am 45 years old. I tell you, for years I have been unable to get a full nights sleep. I am also what some people deem as restless or hyper. I cannot sit still or stand still for very long....Not necessarily that my legs hurt (although I do have some arthiritis and knee trouble), but I am thinking because my legs are "tired". If anyone knows what I mean. For years I have worked as a pharmacy tech and am constantly on my feet. (I also wonder if the rheumatic fever I had at age 10 has something to do with this as it effected my legs and I suffered excruciating pain in them)

The last few months, I would just lie in bed trying to fall asleep, and eventually would about 2 am. Which is just not good when you have to get up at 5:30 am. I was always exhausted! My husband kept telling me I needed a vitamin or something. I said "No, I just need a good nights sleep" Now, I am getting some good sleep. I did have trouble falling asleep last night, but because I think I am getting sinus trouble again..It is so nice to not feel absolutely exhausted every day.

cmg61
Posts: 17
Joined: Wed Oct 06, 2004 2:03 pm
Location: Independence, KY

Spouse's and others who don't "get" RLS

Post by cmg61 »

Sara,

Thanks for the welcome!! Thank you everyone for the welcome!! I truly feel like I've found a home where people understand and "feel" what I'm feeling!!

My husband has also been very good about this whole RLS thing. RLS isn't my only medical issue - I have hemochromotisis, hyperparathyroid disease, depression, anxiety - I'm just a basketcase!!

I just take one day at a time and deal with it. That's all you can do. No sense in worrying about tomorrow before it gets here!!

Connie

porkgrind3

My husband is not supportive whatsoever

Post by porkgrind3 »

Hello,
Im so glad there are people out there who actually care and are understanding.
My husband however has not been either for the last 7 years!
Ill be honest my house is a disaster area. BUT it has not always been this way! Just recently I have gotten increasingly tired and just didnt FEEL i COULD do anything. I get tired right after I do one little thing like take the trash out, or even go to the bathroom!
Now that Ive been diagnosed with RLS Im looking foward to getting better. My husbands thinks its bologna and I shouldnt take the medicine. Hes been reading a health food book and is pushing me to eat healthy foods and not take any medicines!
Im all for eating healthy..I know I probably dont eat the best foods at times, but Im not an anorexic or anything! I need to lose weight as it is!
Anyway I just want to let you know how lucky you are to have SOMEONE support you. Good Luck in all you do.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hi, and welcome--

SO sorry you're having such a rough time, and I'm sure we ALL here hope that diagnosis will lead to an improvement in your quality of life!

My husband's one who doesn't quite get it right now, but I think will support me even if he doesn't really understand, if I get to a point where I REALLY need him to.

But I've had some really cold and patronizing responses lately from people I expected would sympathize. That has hurt and surprised me. :( It's not as if I've made a big deal, but "facts is facts" and the fact is that I'm uncomfortable a lot of the time.

My symptoms have been around for 20+ years, but were mostly intermittent before. Now that they're more constant, they're starting to affect my "public" life more... I'm antsy at family gatherings and things I can't hide and just suffer with at home.

I can certainly understand why people can't relate to RLS, it's a hard thing to describe to someoen who doesn't have it. But I personally am offended when people who SHOULD know me well enough to know I wouldn't make any sort of deal out of this unless it was REALLY serious for me and impacting my life and relationship with them don't seem to even want to TRY to understand what's happening to me... and what it may mean to my whole life ahead! If the roles were reversed, I WOULD at least TRY to put myself in THEIR place!!! :cry:

So, anyway, your experience with your husband is part of why we brought this subject up. People DON'T understand... even folks that are close enough to us that perhaps they "should". It adds frustration to the discomfort and frustration of RLS, and helps to wear us down even more!

As for your differing ideas of how to combat your RLS, it must be very hard to have him not support your medicinal options. If they help, I hope that you can convince him to ease up on his criticisms of them.

However, there ARE studies that say that some nutritional strategies may help RLS, and probably improve your overall health, too. Maybe you can diffuse a little of the tension by considering some of his suggestions-- or by reading the section of this forum about non-pharmaceutical strategies, for more RLS-specific ideas.

Obviously we don't know anything about your relationship with your husband, but maybe he really believes you could be helped in that way. And a lot of non-pharm. things would be okayed by your doc, I bet, to do in conjunction with your meds.

Well, anyway, just wanted to say hello, and that I feel for your situation. Try to take good care of yourself, and I hope, as I said, that diagnosis will open up some new options for improvement.

Sara

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Welcome Porkgrind3

Post by jan3213 »

This is Jan

As you can see, I posted above, and to be honest, I wasn't quite a candid as I could have been. I UNDERSTAND COMPLETELY WHAT YOU ARE GOING THROUGH!!! I've had RLS for 20 years and was diagnosed Thursday with fibromyalgia. I retired early from where I worked (they offered a really good deal) almost 2 years ago. I've heard things like "You don't keep house like you used to"--"You don't keep up with the laundry"--etc. I worked from the time I was 18, married, had a son and twin daughters, worked while they were small, only taking off a year and a half (my mother and mother-in-law took care of our children), worked long enough to get a good pension and free health insurance for the rest of my life. BTW, it was my mother-in-law's idea that I go back to work to "help my husband make a living". Now that I'm retired, I have RLS and fibro. I've had RLS for a long time, but it has gotten worse in the past two years and I CAN'T do what I used to do (I'm 57). My house isn't the immaculate house it used to be, but, believe me, IT IS VERY CLEAN. I have a wonderful husband, but he doesn't accept change, and our lives are changing. He has a new career and I'm retired. He told me to get a hobby. I got one. I'm a folk artist. I have received acclaim for my work which was a REAL SURPRISE and SHOCK to me. I have been in a national art fair among other things, and just last week, a local TV station interviewed me for a "Spotlight on Local Artists" segment. All of this happened in just one year. I'm saying this, not to brag, but to say that perhaps there is a small amount of jealousy. I don't know. But I do know that I don't get the sympathy or empathy I should. I fall asleep when driving, yet my husband thinks I should be able to drive a hour away from here. It's DANGEROUS for me to do that! Men are funny creatures. I've supported him while he went back to school to get his teaching certificate (he had a degree in mass communications and was in the business world, but got downsized). He's now working on his masters in school administration while working full time. I type his papers for him. I was a paralegal for 28 years. Made a great salary. Make half of that in my pension. I am still constributing financialy to the household--in fact more than a lot of women in our town do when they work full time. I feel your pain Porkgrind (I wish I knew your name-Ha!!). Men have fragile egos and they need strong women, I guess. None of us is perfect. I know being in constant pain, as I have been these past few months, hasn't been easy for him to handle. I've been cranky I know. But it's easy to react to what he says to me. We have had some stress due to a problem with an older child and that hasn't helped. We are in this marriage for the long haul because we truly are committed and love each other. We believe in our vows and are Christians, but it's work and I hope you and your husband can work things out, too. I pray a lot--I'll pray for you if that's okay. And, anytime you feel the need to "Talk", send me a PM.

Take care of you!!

Jan
No one is alone who had friends.

ViewsAskew
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Walking

Post by ViewsAskew »

I've often been frustrated when someone can't escape themselves for at least a moment to see something from another's perspective. In the case of RLS or other chronic disorders, I believe that what prevents it is probably fear. When we are afraid of losing something, we become more closed. Families, spouses, partners, friends all lose something when someone within has a chronic health issue. Loss includes the time spent together, the types of activities that can be done and the frequency, expectations for how things should be, even the types of conversations that are had, etc. Fear and loss tend to prevent us from seeing the big picture or the other person's perspective.

IMHO, many people in the US have difficultly expressing those kinds of feelings, too. It's hard to say, "Honey, I'm scared. I don't know how to help you and that makes me feel helpless. Things aren't like they used to be and that makes me angry and sad. And, what about me? I don't get your attention like I used to and am lonely." Instead of getting to this place, it's easier to be mad or refuse to acknowledge the situation. Especially when it's a disorder that people can't see and touch or know much about.

To compound it, I somtimes have a hard time communicating how difficult living my life can be at times. I don't always have the words and because I am afraid to say some of it or am afraid that it's not just RLS but that I am going crazy or losing neurological function that I won't get back. If I can't communicate exactly what it means to me, it's hard for someone to understand how difficult it is or what I am really going through.

Of course, I'm writing this on a day when I'm not feeling unloved, uncared for, angry, sad, etc. :lol: Wait and see what my response is then!!! In seriousness, though, I feel I need to be willing to see it from their perspective in order to help them to see it from mine. Maybe they can't see it. Maybe they won't. But maybe I can do or say something honest and real that will help them bridge the gap.

Ann (having a good day after almost 8 hours of sleep!) :!:

Oh, yeah, and sometimes I just need to vent and for others to listen and murmur understandingly. I HATE it when I am just trying to vent and someone comes along and tries to talk about it. So, my apologies in advance to those that just wanted to vent and be validated. In that case, "I hear you, girlfriend!"

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Ann--

BOTH your answers worked for ME! :wink:

I won't try to elaborate on our well-made points, however, I DID want to mention briefly, that writing my "quality of life" statement for Becat to take to the conference (NEXT MONTH! Wow!) actually went quite a ways for ME in helping me examine how my life HAS changed (personally and in relation to others) and how it MIGHT change considering my recent jump in progression of RLS symptoms.

Also, I have found that one thing people without RLS sometimes CAN relate to, is if you try to explain the scenario that you're totally exhausted, it's been a long day, and alllllllllllllllll you want to do is just sit for an hour and relax by the TV, maybe cuddling with a spouse. But when you TRY to sit quietly and relax, you CAN'T, no matter what you try, no matter what position, no matter what you eat/drink, no matter how hard you concentrate on just being still and calm and quiet.

When I've gotten people to visualize that, somehow MOST people have been able to "get" the level of frustration and discomfort and such. Rest is something MOST people value... and most people have experienced being robbed of. If they can get into the thought process that we're fighting for rest, calm and relaxation EVERY day (or most days), it seems to be something more people can relate to. Just my experience. :)

Take good care, everybody!
Sara :D

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