I Think You Got Me Wrong...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
badnights
Moderator
Posts: 4297
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: I Think You Got Me Wrong...

Postby badnights » Mon Nov 11, 2013 9:17 am

Hi HSJ1
I just read your first post here, and then the rest, but I wanted to say that I could have written that post myself. I am taking meds (hydromorph contin, mainly), but I am still falling apart. I wish I had quit my job so that I wouldn't have to watch myself in this slow and awful decline, surrounded by people who don't know what I used to be like, and don't know that I have a disease, or what it does to me. And don't care.

It's being tired all the time. That's what makes the wet-blanket-over-the-head feeling. Somehow, we have to learn to do less, expect less of ourselves; and sleep whenever our bodies will let us. Also, we have to pay attention to the meds; how much of it is being caused by a medication, and what can be substituted, what to try next....
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

User avatar
wyldaeval
Posts: 7
Joined: Fri Apr 11, 2014 7:20 am
Location: Mississippi

Re: I Think You Got Me Wrong...

Postby wyldaeval » Sat Apr 19, 2014 5:39 am

This thread has been a real eye opener for me. I can relate to all of the posts and could have written most of them myself, and while it's a relief to know that I'm not crazy, I hate knowing that I'm not alone in this.

Having become a recluse over the last four years after becoming unemployed and ending up on disability, I'm very fortunate to have a caring and loving husband, but I won't say he always understands my diseases or my needs. It has been hard on our marriage. My sleeping "schedule" is usually the opposite of his, which makes him feel like I don't want to be with him and causes HIM to feel lonely and rejected, understandably. I hate that he takes it personally, and he realizes I don't have any control over my sleep schedule and that he shouldn't take it personally, but it still happens. I'd love to be able to go to bed and will myself to fall asleep for the night, but that has been next to impossible. He's also a cuddler, something I used to like. Now, I get too hot to be that close to another body, if that makes sense. Having his arm across my rib cage is extremely painful and I have to be careful how I handle that so I don't alienate him. I'm too tired and sore to walk on egg shells all the time and pretending to be happy is exhausting! We have an event coming up next weekend at our house, and I'm dreading it. I just want to grab a suitcase and escape to anywhere else for the weekend. I'm wondering how long it will take my GP to add 'agoraphobic' to my list of ailments. The hubby swears I'm there already. I had to remind him that agoraphobics can't leave the house. I just prefer not to leave the yard. That's not agoraphobic, right? :?

There was a time when I couldn't stay still. I had to be cleaning, painting, working, fixing something, walking, fishing, socializing, going on road trips, etc. Now, I'm also "just existing". It's painful to stay in bed and painful to get out of bed due to the fibro, and I never get enough sleep. I'd always been something of a perfectionist and now I watch dust bunnies pile up under the furniture and prioritize household tasks. Clutter used to drive me crazy, but I've learned it won't kill me. I prefer the company of my dogs to most people. They don't expect witty repartee or to be entertained by me. They're happy with a bowl of kibble, not a huge meal that I had to prepare and clean up after, which never happens anymore. I haven't seen most of my family for over ten years because they're on the west coast and I'm nearly on the east coast. I flew out to CA for the birth of my last granddaughter, stayed there for one week, rented a car for daily visits to her hospital, and by the time I returned home I wanted the earth to swallow me up.

As for friends, not many come around anymore because I'm "boring and too quiet" and I don't like to do the things I used to do. The "me" I remember and want to be again is trapped in this foreign body, one that is up at all hours of the night surfing the web or watching a few movies, one that is exhausted and in pain all the time, one that gets angry, frustrated, depressed, and sometimes doesn't even want to exist anymore. I can't even read books much anymore because it hurts to hold them. I have a cell phone, but it feels more like an annoying intrusion on my misery, so it's usually on "ignore". People that didn't know me before the hostile take-over of my body think that I'm antisocial or boring. I used to be fun and sometimes even funny. I used to throw huge Halloween parties and go all out on my home-made costumes. I used to decorate for Christmas. This "new" me just wants to curl up in a ball and be left alone most of the time. If it weren't for the internet, I'd have no friends. The one constant in my life is my husband, and my two grown children and granddaughters. I haven't even met my son's children yet and they're 12 and 8, but they're too far away for me to visit. Those three people are the only one's I answer my cell phone for. Talking on the phone takes too much energy and is usually emotionally exhausting. I've fallen asleep in mid-conversation. Talk about embarrassing! Of course, the person on the other end of the phone is insulted, thinking I've gotten bored and stopped listening to what they're saying. The two worst moments in all of this were, 1)Falling asleep during the funeral service for my husband's brother 2 years ago, and, 2)Falling asleep during a Home Coming/Reunion dinner at my husbands High School over a year ago. His friends noticed. Because of those two incidences, I didn't attend my mother-in-law's funeral last year. I think his family is still a little put off about that. I've driven off the road, having fallen asleep at the wheel, so I try not to drive anywhere. Knowing it could cost someone their life is unacceptable to me, so my husband has to take time off from work to take me anywhere. I used to worry about what our friends were thinking about me, but that's a useless waste of energy and very depressing. I feel like a social leper. (No offense meant to anyone.) Not a day goes by that I don't wonder why I'm here. I have no purpose, no motivation or energy, no joy. Something tells me you can all relate to this.

My best quality is a contradiction. I'm ever the optimist, always hoping the next new medication or treatment might change my world. I have to be an optimist, otherwise I might not be here. I'm optimistic for all of us. I wish for a day when "they" will find an answer to this and a treatment that won't make things worse by causing new side effects. Hope keeps me sane, but just barely.

ViewsAskew
Moderator
Posts: 14543
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: I Think You Got Me Wrong...

Postby ViewsAskew » Sat Apr 19, 2014 8:36 am

EDITED TO ADD: Victoria's post brought this up for me - I should have started with responding to your post, Victoria. I shouldn't have been writing when very tired. Thank you for sharing that. As said below, these types of posts often seem too true, too raw, to real for us, but they also show our will and how hard we try and how much we care about each other.

---------------------------------------------------------------------------------------------------------------------------------------

Since the iron infusion, I haven't been able to reduce the drugs by much (1/10 less), but I feel better somehow. Maybe it's because I tried everything possible and now I can move on. Or maybe I am better in some way. Maybe the depression I've felt off and on for several years is in an off phase or maybe lifting for good.

For years, I've wanted to want things - but I just didn't. I didn't want to do anything. I do think depression is much bigger for many of us than we realize. It's hard to know you are depressed when you are.

In the past week or so, I've actually wanted things again. Several things, actually, dreams for what I could do, be, have. I had several decent days and I planned several things. I woke up feeling GOOD - and felt good throughout the day. And then, last night, my period started. I've had breakthrough for several nights and I didn't sleep until 6 AM last night, but I had a conference call at noon that I had to prepare for. I HATED getting up since I was finally sleeping. At some point this afternoon when I was contemplating how could I accomplish anything I was dreaming of when no matter what I do, I can't count on being functional at any given point, it all came crashing down.

So what that I feel better. Nothing has really changed. The drugs I have to take, the sleep issues, the memory problems, the hypersomnia, the inability to schedule anything because I have NO idea what will happen....it's all the same. And likely will be for a long time to come. With one exception, all my plans required that I be able to plan, show up to meetings, and be able to use my brain effectively.

The only dreams I can dream are ones that do not require me to be in a certain place at a certain time with a certain brain capacity. If I can find a way to live my life and contribute/accomplish in those boundaries, then I can be hopeful. Until then? I get to be happy that I feel better. And, that is good - really it is. But, in some ways, I almost wish I didn't. Then I wouldn't be making pie-in-the-sky plans.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
Posts: 6623
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: I Think You Got Me Wrong...

Postby Polar Bear » Sat Apr 19, 2014 12:07 pm

These two last posts, ViewsAskew and Wyldaeval, are so poignant. They express so clearly the true story behind the jiggly creepy legs/arms and the having to walk about. It's not all about WED/RLS symptoms, it's also how our entire lives are affected, every aspect imaginable is touched by this awful disease.

The content of these two posts is very heart sore, and yet they are written beautifully and honestly and would make wonderfully informative reading for non sufferers/doctors/etc. etc.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cornelia

Re: I Think You Got Me Wrong...

Postby cornelia » Sat Apr 19, 2014 3:46 pm

Your story sounds a lot like mine and you have written it down very clearly and I wish too that many people would read it; doctors included. I recognise all your moods and the not answering the phone etc because of severe energy problems. The only thing is that I don't have many friends/family that do not understand the effect of my illness on my life, only 2 actually and I don't want to see them anymore. All the others I don't see because they know I would love to be able to but just can't. We use email, but not that often anymore because I have nothing to write about anymore with this life. I guess I'm lucky most people understand my almost non-existing quality of life.
This board is indeed wonderful and I hope we will hear from you in the future.

Corrie

Sojourner
Posts: 1653
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: I Think You Got Me Wrong...

Postby Sojourner » Sat Apr 19, 2014 7:51 pm

"He's also a cuddler, something I used to like. Now, I get too hot to be that close to another body, if that makes sense. Having his arm across my rib cage is extremely painful and I have to be careful how I handle that so I don't alienate him."

My "lady" is also a cuddlier and I also share your/our inability to respond in kind. Sometime all I can do is curl up in a fetal position, slide down lower on the bed, aND place my face into the warmth of the crease of her back. I think she appreciated the effort and I can't express how good it feels if only for a minute or so. She also has a life threatening/life debilitating condition and currently, because of her medications, is routinely asleep before 8 pm (often by 6pm) in the evening and up around 5 am. Talk about being on two different schedules. I know she wishes she could do more for me as I for her.

I often feel that I do not want to visit this forum becasue of posts similar to ones in this thread--many of which are sad, disconcerting, and way, way too close to home. I don't want to read them, I don't know what to say, and they make me afraid. They make me want to stay in a state of denial and disbelief that people suffer so and that "this" could happen to anyone let alone me.

But, there is also so much kindness, caring, and strength here. Maybe even love. Certainly, inspiration and hope. I can feel it in your words and it helps me. THANK YOU.

Wishing all here peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

badnights
Moderator
Posts: 4297
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: I Think You Got Me Wrong...

Postby badnights » Mon Apr 21, 2014 12:19 am

If I let myself slip, I will sometimes end up thinking that hoping is a waste of energy, but usually, I can accept that it's hope that runs the world, and that this is enough. I don't need the assurance of an answer, only the hope of one.

It would be far nicer to have the darn answer, but in lieu of that, I need to hope. I need to believe that there is a better future. In fact, it's not so hard, because this belief aligns with everything I know about science and people. Even complicated disease and other biological processes can be understood by the application of enough hard work and ingenuity, which we, as a human race, have in abundance. This is not hard to believe, it's simply obvious to me.

So the hope is not hard to come by. The trick is to be happy with that, without the subject of the hope, with only the hope itself. (object? subject? I get them mixed up) Yet even here, it seems logical, and I've read of studies that back it up, that hope alone is enough to reduce pain & fatigue, alter your physiology, and enable you to find meaning and purpose.

It amazes me which of my friends get it and which don't. The ones whom I would have thought would be most understanding end up saying things like "just relax" and "get some sleep", whereas some that I thought were too wrapped up in their own egos to even notice what was happening seem to appreciate the finer nuances of my disability.

Regardless, I know I have lost huge things from my life, in the cognitive realm, career-wise, and in social & personal relationships. There are things I can't do, and carry on an intelligent conversation is one of them, not when I'm tired, which happens unpredictably. So I prefer not to be around people, and I am reluctant to make social plans. Sometimes, I am sure it is me and not them who demands the quick-wittedness. I force myself to accept (or offer!) an invitation now and again, and I do it no matter how I feel. This I find is better than hiding at home, even if I am too tired to engage with people. It keeps me out of myself a bit.

I am relatively cheerful now for some reason, after a couple of years of pretty obvious depression. I took 3 weeks in Feb during which I didn't work, slept almost as much as my body would let me, did yoga every day, started eating healthier. I don't care where hope comes from, I'll take it. We all need it.

We can hope - a realistic hope - for a day when our disease is understood well enough that we can return to functioning as we used to. Meantime, we can still make plans, but we have to tailor them, they have to flexible enough to not require us to be alert at a given time, only that we have alertness at some point within a range of time. When we feel that it's not worthwhile to make those plans, that's depression. That's part of the spectrum of pathology we are dealing with. Another things to address, not anything with inherent meaning, not a pointer to truth, just something that distorts our thinking and needs to be addressed.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
Moderator
Posts: 14543
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: I Think You Got Me Wrong...

Postby ViewsAskew » Mon Apr 21, 2014 3:51 am

Beth, something in your post reminded me of something I head at a professional conference I attended last week. Of course, I can't remember exactly what it was, but it was related to hope and needing to feel hopeful.

The session was on neurochemistry of the brain related to culture change in the workplace. The research was related to positivity - and that people demonstrate more creative and flexible thinking when in a positive state of mind. Also, that people in a growth mindset find more solutions to problem and put in more effort. I've long felt that when I take hope away, I can't find any reason to try. If I start from a perspective of fear, concern, worry - that I just am stuck and can't do anything.

The key, as you noted, is finding a way to stay positive and hopeful while living within the current constraints that don't seem positive or hopeful. To find a way to be flexible about all of this so that you can do things and be hopeful, while allowing sleep when it comes.

Not always the easiest, is it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

cornelia

Re: I Think You Got Me Wrong...

Postby cornelia » Mon Apr 21, 2014 9:40 am

Yes we need hope. I was not very hopeful when I read the article on hope for RLS patients in Nightwalker's mag. the other day. My heart jumped from joy but soon it sunk. For many 60+ patients here on the board it means that we have to wait another 12, 13, 14 years for another med to come on the market and we are desperate for them. This is because the article said that no new meds are planned and that means a loooong wait for many of us because it takes so long for a pill to come on to the market. The hope is for the far future as I understood it. I don't think myself that we can expect a cure for the next decade or even decades because these neurological disorders are difficult to entangle; so many neuro's have told me.

I don't want to be negative but these are the facts. I always try to not think of the future and live day by day. But secretly I hope that a miracle of some sort will happen to make our lives easier!
Corrie


Return to “Help for Relationships”

Who is online

Users browsing this forum: No registered users and 1 guest