Lonliness

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Fri May 12, 2017 8:32 pm

yawny - sounds like a great book. Need to add it to the list...the very long list...

About 17 years ago, I lost two cats and a dog in the same year. In some ways, it was a good thing as I had just met the man who became my husband and he is deathly allergic to almost all animals. But, what a sad year. My 17 YO male ginger cat had kidney failure. I found him in a drive through; the cars didn't want to move forward as he was begging by the DT window. I said I would take him to a shelter. I had cat food in my car because I had just gone shopping. I put some on the back floor board for him and he would gobble a few bites, then run to my seat and head butt me in thanks, then go grab a few more bites. He never was taken to a shelter. He was laid back, sweet, and loving.

My female cat had breast cancer at age 12; she died relatively quickly after diagnosis - it is apparently aggressive in cats. She found me - adopting my yard when she was about 4 months old. Such a sweet and smart cat - she eventually became an indoor kitty. She was the alpha of the three, but in a nice way, lol.

My German Shepherd/Akita was 11; he was the most loyal, sweet, loving, perfect dog in existence. OK, not perfect - I took him from a shelter when he as 11 months old and he always had separation anxiety. He wouldn't eat when I went on business trips unless my best friend (who lived with me when I first had him) would stay with him. And, when I would go to work initially, he would panic and had doggie IBS - I had tile floors and eventually that stopped, thankfully. He always sat on my feet, leaning on my legs, seemingly trying to meld with me. He was gentle and fiercely protective of me when he was concerned about me.

Together they moused in the fall when the weather was cold outside.They never argued or fought or were jealous - together they were the best set of pets anyone could want.

I have used hubbies allergies as an excuse not to get another pet....but part of me never wants to feel that much loss again. And part of me is sure that no pets on earth could possible be as wonderful.
Ann - Take what you need, leave the rest

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legsbestill
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Re: Lonliness

Postby legsbestill » Fri May 12, 2017 10:29 pm

They sound like an incredible set of pets. I really enjoyed reading about them. Probably just as well allergies prevent you getting pets now - they would always compare adversely to those. And your husband is no doubt some sort of consolation - a good one can be almost as rewarding as a loyal pet!

badnights
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Re: Lonliness

Postby badnights » Sat May 13, 2017 11:31 am

I would have loved your pets, too, Ann. The Sean Achor talk is worth listening to, legsbe. I had listened to it a some time ago (years?) and had forgotten teh gist of it. But it came back quickly. I think those 10 minute talks are more to get you thinking about something. To create real change, some deeper effort is needed for that. I would like to check out the book, yawny, and see if I have the jam to change the way I react to thing. I might be ready for that sort of work at this point in my life.

Well, it's 5:30 AM. I worked til 2:30, got home and ate something, played with my dog who had been at the office with me since 8 PM, wrote my mother an email of news (hard to find news when I do same-old every day, but I talked about Rhoda), took my hydromorph at 2:30 AM, Lyrica at 330, zopiclone at 500. Legs are not giving me a break, they didn't yesterday either and I had to add 3 mg hydromorph at bed time, but even so had to add a levo-carb 2 hours later. That got me sleeping but as usual wore off 4 hr later. I had some normal sleep after htat. Now I get to start it all again. Welcome, Sun. Melt the snow and say hello to everyone else; I hope I catch a bit of spring cheer before you set.
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Lonliness

Postby leggo_my_legs » Mon May 15, 2017 2:48 am

badnights, that sounds like some badnights! :( I hope it improves.

I am not faring so well at present either. Calling my doctor tomorrow to make my appt sooner. Kind of dreading it, choice will be try DA's again, which all seemed to make me feel like crap (though honestly I didn't try them for long), or methadone.

ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Mon May 15, 2017 5:19 am

Beth - I honestly am not sure if the multiple infusions was the best thing I did....or if it was taking a 7, almost 8 weeks off all opioids. I did the last infusion and the break from opioids at the same time, so cannot be positive. But, it was dramatic. My life hasn't reverted to the life I had 15 years ago, but it is better than it has been since the madness started.

My mom does not like talking on the phone. She calls about four times a year and all the sudden an hour has gone by and she is always shocked by it. It usually starts because she needs me to find something on the internet or has a question she thinks I can answer and always ends because either her ear hurts or the battery on the phone dies. Of course, I like to believe she really does love me best :-) and her talking for an hour when she hates talking on the phone is how I know! Whether she does or doesn't is immaterial.

She has been concerned about me for quite awhile - I think many family members are when they hear of opioids, sleepless nights, losing jobs, flying to distant lands to see doctors, etc. Moms doubly so. To add to it, she feels guilty, I would hazard, that it was her genetic code that created this mess, yet she can always get to sleep and stop the RLS if she immediately goes to bed when it starts. As with many moms, she would gladly pace the floors all night if I, her child, could sleep.

She called me about two months ago to ask about something; it was ended as usual when her portable phone batteries started to beep their upcoming demise. We usually have the same goodbye - she tells me her ear hurts or that the batteries are dying, that she cannot believe we talked so long, then she tells me she loves me and calls me one of the special names she uses for those times, then I respond in kind, both of us then disconnecting the line. This time was different; after the part about the phone dying and how amazed she was that she talked so long, she told me that it was so nice to hear me happy. That I sounded better than I had in years.

And, she was right. With insight that only a mom or other very close loved one would have, she heard things I was unaware of: the tenor of my voice, word choices, laughter, the rate of my speech, and on and on and immediately knew that this was a healthier and happier daughter.

I wish that for all of us.
Ann - Take what you need, leave the rest



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Polar Bear
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Re: Lonliness

Postby Polar Bear » Mon May 15, 2017 5:51 pm

This time was different; after the part about the phone dying and how amazed she was that she talked so long, she told me that it was so nice to hear me happy. That I sounded better than I had in years.

And, she was right. With insight that only a mom or other very close loved one would have, she heard things I was unaware of: the tenor of my voice, word choices, laughter, the rate of my speech, and on and on and immediately knew that this was a healthier and happier daughter.

I wish that for all of us.



How lovely is this. :D
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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leggo_my_legs
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Re: Lonliness

Postby leggo_my_legs » Tue May 16, 2017 7:06 am

Wonderful to hear about everyone's pets! They are so great...

I listen to a lot of talks on dharmaseed.org. They have tons of them. I fall asleep listening to them a lot. I turn down the volume and hope for osmosis. Rick Hanson has at least one talk on there. I went to a seminar of his a few years ago. There's a great one on dharmaseed by Steve Armstrong called "Working with Dysfunctional Strategies that Cause Suffering."

pamhb
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Re: Lonliness

Postby pamhb » Fri Sep 08, 2017 8:06 pm

I think that depression often goes hand-in-hand with this disease, and that depression can lead to loneliness by isolating us from others. Here are some of my coping mechanisms:

1. Joining group activities that help me form and maintain social networks, while also having some side benefit for management of my disease. Some of my favorites are: aqua exercise, tai chi, singing in a choir. I'd also like to try out some group meditation sessions.

2. Remembering who my friends are, and reaching out to them when I'm able. It may be as small as an email, or something larger like lunch or coffee. Biggest challenge (apart from feeling well enough to reach out) -- remembering to keep the conversation about my friends, and not about me. It's too easy to fall into a victim mentality with this disease, and to want to over share...

3. Understanding when I have tipped over into the well of depression, and then doing something about it (easier said than done). I have not used anti-depressants (yet), but recognize that I may need to consider Wellbutrin if my other strategies don't work. Some of the other strategies that have helped are meditation, cognitive behavioural counselling, and regular exercise.

4. Finding small ways to feel connected, such as grabbing a good book (preferably humorous and never sad), and heading off to a local coffee shop where I can read and people watch.

Hope some of this helps.

ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Fri Sep 08, 2017 8:19 pm

pamhb wrote:I think that depression often goes hand-in-hand with this disease, and that depression can lead to loneliness by isolating us from others. Here are some of my coping mechanisms:

1. Joining group activities that help me form and maintain social networks, while also having some side benefit for management of my disease. Some of my favorites are: aqua exercise, tai chi, singing in a choir. I'd also like to try out some group meditation sessions.

2. Remembering who my friends are, and reaching out to them when I'm able. It may be as small as an email, or something larger like lunch or coffee. Biggest challenge (apart from feeling well enough to reach out) -- remembering to keep the conversation about my friends, and not about me. It's too easy to fall into a victim mentality with this disease, and to want to over share...

3. Understanding when I have tipped over into the well of depression, and then doing something about it (easier said than done). I have not used anti-depressants (yet), but recognize that I may need to consider Wellbutrin if my other strategies don't work. Some of the other strategies that have helped are meditation, cognitive behavioural counselling, and regular exercise.

4. Finding small ways to feel connected, such as grabbing a good book (preferably humorous and never sad), and heading off to a local coffee shop where I can read and people watch.

Hope some of this helps.


Thanks for sharing.
Ann - Take what you need, leave the rest



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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.

badnights
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Re: Lonliness

Postby badnights » Fri Sep 08, 2017 11:49 pm

I've often grabbed something to read and made my way to a coffeeshop just to be around people. It was so hard to reach out to anyone when my days and nights were backwards, but I made an effort to let people in if they were reaching out - even if I didn't feel well enough to see anyone. I think as a whole it was worthwhile, but there were times I should have just said no.

What helps me the most consistently is lifting weights. I play hockey and other sports, but they just can't hold a candle to the weight lifting and associated workouts. I joined a HIIT gym because I was getting depressed being unable to play hockey after knee surgery, and I like it so much I've actually cut back on hockey so I can do more gym. Added bonus is a social experience - interaction with a wide assortment of people in a very non-judgmental atmosphere.

I have often tried to analyse my response to the gym - is it an addiction? Is it healthy? Harmful? I go there even when I'm at a physical low and sometimes I'm sure I've done myself physical harm from working too hard when I'm weak from lack of sleep and general everything WED. But I still do it. I need it. I'm sure it has to do with endorphins; we know exercise increases levels of endogenous opiates, and I am plain happy after gym. It just makes me happy. I feel so good having some muscle mass; I feel a contentment that has physical roots. If I don't go for three days running, I start to feel anxious again.

Another thing I need to combat depression and anxiety is a healthy population of gut bugs. I had SIBO (supposedly - who knows, really! but I got stabbing awful pains half the time when I ate, no matter what I ate), and when I got rid of that (supposedly - anyway the pains stopped and I wasn't bloating after eating) then my anxiety and depression also stopped. I thought it was all about the bugs at first, but now I know I need the gym - the weights - too. I recently have had a recurrence of stabbing pains and gut unhappiness, 7 days now, and on day 2 the anxiety crept back. Going to the gym made the anxiety back off.

So I need both - good gut bugs, and hard workout with weights.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Lonliness

Postby Polar Bear » Sat Sep 09, 2017 5:45 pm

I totally understand that depression can go hand in hand with RLS, indeed how can it not when it affects our social capabilities to go to the movies, sit through dinner in a restaurant etc. Apart from the actual RLS symptoms of needing to move because of the creepy crawlies we have to accept that lack of sleep just sometimes drains us, drains the energy needed to have the enthusiasm to be good social company, it can be difficult to just make an effort.

But make an effort we must, no matter how big or small. What is the alternative, do we sit about counting the flowers on the wallpaper?

Like many sufferers here I also have other issues, fibromyalgia being one - this can feel a bit crossed over with my arthritis. Being realistic, sometimes social outings are arranged with crossed fingers. Because of the combined effects i.e. lack of sleep and fibro/arthritis one day can feel very different from the next. One day can mean skipping up the stairs, the next can be going upstairs with aching legs of cement.

A friend may ring and suggest we go for coffee and catch up - and i'm still in my dressing gown. I've probably done a few chores but finding the enthusiasm to get showered and fit to face the public is another matter and will be done eventually. Or having been up and down all night, perhaps I've gotten to sleep at 5am or 6am. So at 10am I could (if I'm lucky) still be in bed if symptoms haven't driven me to get up and mobile.

Friends who matter know how it is with me. They accept me. RLS symptoms and wearyness/aches and pains are a part of me, but I definitely do not make it any part of a social conversation. It bores even me - and although my very good best friend is more than willing to be a listener should I need it, I try to keep the jug half full :)

It is very rarely that I decide not to go out no matter how weary or miserable I feel because as long as I have enought time to get some make up on, the earrings also, get a smile pasted on and the lippy ..... as soon as we start chatting the wearyness will fade somewhat and we'll have fun and put the world to rights.

So what if some RLS Symptoms rear their head and I find it necessary to stand up and do some 'discreet' stretching - I don't care, I will do what is necessary for comfort. And am very willing to tell anyone why - especially if they appear to be taking notice of me. I'm like an RLS Missionary :) Come hither and I will tell you my story !!

Unfortunately physical exercise does not make up a part of my lifestyle, just go for a walk and garden etc. but nothing strenuous. I craft, change my furniture with paint, decoupage, read read and read some more, what I do depends on how I feel on the day.

Take a notion and within an hour my bathroom can go from acqua to yellow, as it did today. Basics are white and charcoal. Two new yellow hand towels while I was grocery shopping, lemon hand soap, yellow flowers.

And wait for it !! I made big mad yellow tissue flowers (tissue left over from Easter) as a temporary stop gap until I come across some other suitable accessories. Well, what's a girl to do but make use of whatever is available in the house :) (They won't last long in the steamy atmosphere)
Today was a good day.

Tomorrow is Sunday, on a Sunday we have 9 for roast dinner, nice pudding, shortbread with coffee. My husband helps (following a full night's sleep) but even so on many many Sunday mornings I have wondered how on earth I am going to cope, how will I get through the day, feel sorry for myself and think..... I've had enough of this. Don't any of them realise what a chore this is for me !! - of course they don't realise because..... there's happy granny, dishing up.... help yourself there's more in the kitchen :) of course it's no bother.... etc. etc. Okay kids, who wants to play football.

It would be so easy to slip into lethargy - I saw it happen with my mother who got she couldn't be bothered to leave the house or join in anything social. She became introverted and crabby, her jug was always half empty.

You know, I just might put a pink streak into my hair, a discreet one. Not like last time where I got carried away and the dye run across my scalp !! We'll call that one my practice run - hmmm I'll think about it. Because about six months ago when I had the (accidental) heavy (cerise) pink fringe so many people smiled at me, hey I love your hair.... good for you.....

My husband's comment was - It's a bit bright !!

Well, haven't I rambled on.... let's work on loneliness, and on what makes us happy - on what makes our jug half full.
Views mentioned that her mum noticed the tenor of her voice, Badnights knows she is happy when she has been to the gym.
I love to have a quiet time in a coffee shop, to read a little and to people watch. The cake helps. Sometimes share a conversation.
Sometimes I love to have the house to myself, sometimes I don't. We are all different on the day.
There's being alone and there's loneliness - they are different !!

Okay - I'm definitely going now......
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: Lonliness

Postby badnights » Sat Sep 09, 2017 7:00 pm

Definitely do the streak in your hair.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Sun Sep 10, 2017 3:44 am

I want to see that streak!

I bought bold eyeglasses today - they large, round, with a heavy bold frame; a deep blue on the rum facing people and a bright deep iridescent pinky-purple on the rim facing my face. Maybe I need a streak in my hair, too....

Which reminds me of this poem.

When I Am Old.

When I am an old woman I shall wear purple
With a red hat that doesn't go, and doesn't suit me,
And I shall spend my pension
on brandy and summer gloves
And satin sandals,
and say we've no money for butter.
I shall sit down on the pavement when I am tired,
And gobble up samples in shops and press alarm bells,
And run my stick along the public railings,
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other people's gardens,
And learn to spit.
You can wear terrible shirts and grow more fat,
And eat three pounds of sausages at a go,
Or only bread and pickle for a week,
And hoard pens and pencils and beer mats
and things in boxes.
But now we must have clothes that keep us dry,
And pay our rent and not swear in the street,
And set a good example for the children.
We will have friends to dinner and read the papers.
But maybe I ought to practise a little now?
So people who know me
are not too shocked and surprised,
When suddenly I am old
and start to wear purple!

Jenny Joseph
Ann - Take what you need, leave the rest



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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
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Re: Lonliness

Postby Polar Bear » Sun Sep 10, 2017 10:08 am

I love that Jenny Joseph poem and have it saved in my docments.
A dear friend aged just 50 had a potentially fatal disease some years ago and then respite for about 6 years. The disease has now returned at stage 4 and this poem is her Mantra.

Ann and Beth - the streak went so wrong last time - very strong colour and a splodge rather than a streak - however it washes out :) and I know a little better now :)

Ann - I fancy your glasses, just make sure any streak tones with your frames :thumbup:
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

pamhb
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Re: Lonliness

Postby pamhb » Sun Sep 10, 2017 6:06 pm

Speaking of glasses ... (go bold or go home is my motto). 8) And definitely go for the streak! We have to take our fun where we can find it.
https://www.facebook.com/pam.b1954


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