Addressing Lonleyness for ppl with CP

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Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 5/8/2008 3:48 AM (GMT -7)   
It's been my experience, and also observation, that   when you are a person with a chronic illness,
after a while the people you hoped & thought to be friends...   dissapear//
its like  when you dont get well, in their "TIME FRAM"//  you are tossed aside & left to rot
 
I experienced this when my son age a chronic illness, life long.. and we had 4-5 hospital stays a year.. with of course many trips to teh city to see the specialists...  people didnt understand.. they seemed to think "WELL there's got to BE really Something Cosimcally NOT RIGHT with these folks...// sinec this little innocent boy is not getting better "
 
WE saw this happen to pther parents & families on the CHEMO floor at Childrens'   many  marriage break ups too ( like my own)   folks  just  in  life for the LONGGGGGGgggggggggggggggggggggg HAUL
 
....
was wondering how   others Cope with  Abandonment
Lonleyness.
families who are not support
or churches..
neightbours....
 
Now I am    experiencesing    Rejection because  I have CP, and some other health issues.
even from  my EMPLOYER
who.....  almost "MOCKS" me because   He's not a sick person...
 
 
thoughts?
suggestions?
 
thx confused
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 5/8/2008 6:30 AM (GMT -7)   
Hi Shelter,

I am so sorry for your situation and totally understand the loneliness and lack of understanding you are expressing. I am surprised, however, that you feel your church has abandonded you. I am going in for surgery next week and have found an outpouring of support from my church/synagague. In fact, so many people want to help me that I have someone coordinating my visits & after care. Please don't give up on your church folks, ask again, perhaps they don't undertand how much a little help would mean to you right now. Your posting suggests you are a religious person, speak up, don't let them give up on you. Don't give up on yourself!.

Best, Cary

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/8/2008 7:15 AM (GMT -7)   
Hi Shelter,

Loneliness is almost worse than the illness itself. I'm a loner anyway but even I feel pushed aside at times. I don't have the problem at work, in fact they are more than accommodating but I'm in a very different environment and am very lucky. But I understand why many people with CP have problems with their jobs. I'm not sure I have a solution but for me it was just get on with my life... Make a life I enjoy. I find comfort in quilting and donating them to organizations who need them. Currently I make quilts for soldiers who are injured in Iraq and end up in the American hospital in Germany. They appreciate it more than words can express. If anyone is interested this group is called Soldier's Angels. You can google and get right to it.

How do others keep their sanity?

Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/8/2008 8:38 AM (GMT -7)   
Shelter,
Thank you for raising this issue. And Chutz, keep our sanity? Well, I'm not sure some days I've still got mine (sort of kidding).

I'm a loner, too, so in a way was isolated too much before CP developed, but have found the few friends I had slowly stopped calling, coming over, etc. People find it difficult to understand that sometimes even sitting for more than a few minutes is problematic, and so I can't do a lot of activities i'd LOVE to do,. Even going to a movie brings more pain. And I also have severe financial limitations now, so I can't just go out to dinner, etc. Plus I always am evaluating what the chairs will be like, etc. Few people understand. Just a couple of family members. I am not sure what to do about this because as long as I have the physical and financial limits (which are of course linked) I can't change much. I guess this forum has been one way for me to cope!

The most painful loss was an older woman who was a mentor and friend for decades. She's in her 80's now and believe it or not in better health than I am, but she doesn't understand that. She invited me for a Christmas event last year and couldn't understand when I couldnt' commit definitively - that I said it was possible if I was having a bad day that I'd have to cancel. I've tried to explain to her and normally she's been very understanding, but I think she's being influenced by others who have in essence blamed me for isolating myself. These are people who don't know me or I've only met briefly many years ago, and they know nothing about my CP condition. Anyway, they are good friends of this woman and she never calls now or responds to my calls. I'm just too tired anymore to try to fight it, to explain to people who aren't wiling to or are maybe incapable of understanding.

So Shelter, I have no real answers except to say that's why I'm here on this forum!

PaLady

Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 5/8/2008 10:45 AM (GMT -7)   
Just a thought, but maybe we could organize friendships outside of this forum for people who want them. Try to find people in the same area and bring them together so they will have a caring and understanding person as a friend. Or maybe people could be phone friends. i don't know, just thinking to help people with lonliness.

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/8/2008 10:52 AM (GMT -7)   
It seems (in my experience) that friends, family, and the church are good at stepping up when you have an "event" like a surgery, but it is harder for them to stick with you for the long haul if the illness cannot be "fixed" with some procedure. Even now, 6 years into my struggle, I am confident that if I were to tell them I'm having an operation they would come out of the woodwork wanting to help me. They don't understand that the really hard days are not the ones that happen at the hospital. It's when weeks or even months go by and no one calls and you are alone with the pain.

I understand why it's hard for them, and I don't want to blame them. I certainly wouldn't want them to experience what I feel, but still sometimes I wish there were a way for them to really know - really understand how much of my life has been snatched away by this. And, more importantly, how much it helps to have someone just connect with you for a few minutes here and there.

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 5/8/2008 5:21 PM (GMT -7)   
thank you for shareing....
I have had that we with you experience in 1 church, but when we've moved I ahve seen the rejection more than 5 churches,// 5 communities.. ago

I work in the health care feild.. so I know what it is to sepnd time with seomeone who's alone in their room in a nursing home.. to sit & read, or pray, or I also minsiter in music to them...
but when I come home....
and my son is sick.. or my own health flares up...
I get.... shunned lke I should not be sick.. or weak..
or even ever ill at all
I had one person say


in our house we are NEVEr sick
we simply dont allow it...

I get questions like.. waht ahve you done... to have ALL this happene to you

my boss.. says you are mroe like JOB every day....
you have more problems thatn any one I know....

i think
i dont dont even see the problesm... most of the time

i usually am thinking my cup overflows...
and Im blessed...
ha
despite thigns taht happen...

we are Human...

and as for me
I try to keep giving.. to those whoa re sick, and dying...
kep pouring out..
but... some how....

Im longong for Freinds that are LONG HAULERS>>>>

I ahd one lday say

so exactly why do you even dare to think you NEED a friend...

maybe you are NOT suppsoed to ahve any,.....

"I couldnt beleive my ears"

lol

Im so greateful for thsi forum...
to hear your stories... and try to help each other,.
one antoher through this all

as for makng conections Im not sure
of the orgianl... goals/ mission etc... policices.. etc..
that's something.... to enquire about?


ttfn
im needing my pillow about now...

ps: how amny think we need spell check in this thing???
lol
i type too fast to spell it right,....
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/8/2008 5:34 PM (GMT -7)   
Shelter,
I think anyone who wants to make more contact with someone can post their e-mail in their profile. That's an individual choice, not a requirement.

I have no clue about spell check on this!

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/8/2008 7:51 PM (GMT -7)   
This topic has really touched my heart. It's been brought up in the past but never with such deep, emotional responses. It just appalls me how so many of you are treated like absolute dirt! Like you don't deserve a life. Yet look at the wonderful things you are doing while those 'fair weather' friends have their noses in the air about us. YOU, my friends have compassion and caring...YOU have sympathy and empathy...YOU give more of yourself than they ever will! I feel sorry for their souls yet it almost embitters me to hear how they treat people who are is daily pain.

WE have each other...and understand and care...and that's something they'll never have. So there! :-P sheesh, I sound like a 5 year old...lol

I started to write something when I posted before but erased it ...can't hold back any longer. Those of us with 'invisible diseases/disorders' are over looked by most people in and out of the medical field. But I'd bet you that is someone movie star or pop singer had what we deal with daily you can bet there would be a massive campaign for money for research and a cure! We're not popular, it's not the scarlet 'A', yet it can destroy our lives. So many other diseases that are preventable by habit or life style get the attention and money, but here we sit getting a pass. This is especially true of disorders like Fibromyalgia and other very invisible forms of chronic pain. If others can't SEE it then you must not have a problem...right? WRONG!! ggrrrrr The only thing that anyone famous with chronic pain has given us is a hard time getting the proper medication. If/when they make the news about it it's often because of abusing their medications.

OK, I'm cooling off now...lol

Shelter, you are an amazing person. Just keep being who you are.

Cary, you are such a bright spot of encouragement. Keep it up!

ryand...you really nailed it down, friend.

cookie... many of us have made friendships outside of the forum. My suggestion, in addition to PA, is to be a bit cautious at first. Chat with others about someone you are interested in getting to know. If they've been a member for a long time then it's more likely they are honest. I have actually had members visit from all around the USA and I love it! I'll check with Peter, admin, and see what he thinks about a thread dedicated to that idea.

and PA... you are just amazing, IMHO.

Oh, for those of us who neeeddddd spell check...lol... if you switch your browser to Firefox (you can download it for free) it automatically spell checks everything you do. I love it!

Hugs all,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/8/2008 9:19 PM (GMT -7)   
Thank you shelter for bringing up this topic.
I have ben feeling so lonely lately and all my friends have faded away.
Just a few weeks ago I sent an email to a few "friends" in order to have a get together and not one of them even acknowleged the invitation. I was so hurt I didnt know what to do.
I had one who I thought was a good friend but recently told me that I'm playing the victim because I couldnt go out dancing and unless I came to see him he wouldnt be talking to me anymore. Then he threw in that I wasnt 'healed' yet because I wanted to be sick, hence playing a victim role.
I found out that he isnt such a good guy, but that doesnt help the lonilines of having him disapear.
I havent really found a way to cope yet, except for finding everyone here. I have the support of my parents and my brother but my sister and the rest of my family have flat out fell off the face of the earth for some reason.
When my cousin got sick a littl;e while back her response of support was overwhelming by my whole family, and while I am so very glad they were all there for her and would never want her to feel alone I felt so hurt that not one of them had even called to say HI.

Its so hard to make friends as you get older and I wouldnt know the first place to start when I get my pain under control. I'm so lucky to have a supportive husband but really need friends out side my marriage. I'm sure its not healthy for him and I to be together so much and have no other outlets.

I am so happy I found this place and hope it will help me feel a little less lonely. Pian+loneliness can never amount to poitive things so I'm glad I'm not alone anymore!
I hope everyone else feels a little less alone now too

Big hugs to everyone here

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 5/8/2008 9:32 PM (GMT -7)   

i've always been a loner - both by choice and by situations.  i haven't had more than a half dozen friends since i got out of high school in 1964.  i know that i'm an odd duck and have fairly severe emotional problems.  besides, i have a peculiar sense of humor and make references to things that almost nobody knows anything about (or even cares about).  yesterday my wife and i went to an oncology open house at a hospital.  something happened (i don't remember what exactly) and i said, "with all my imperfections on my head!"  anyone want to guess?  Hamlet, Act 1, scene 3(?) or maybe 4, the ghost of Hamlet's father on the parapets of the castle.  or in a thread earlier this month, i referred to "frack" from Battlestar Galactica.  WHY DO I REMEMBER THIS CR*P!!!!!!!!!!!!!!!!!!!!

i spent much of my career in "public" - i.e. in groups that knew each other by reputation.  there weren't that many people in the UK when i was there who could build a system that would work for fighting WW III when the UK is a nuclear wasteland.  but i did.  it was just part of who and what i was back then.  there never were more than 30 to 50 people in this group.  i was accepted because of what experience and knowledge i brought with me and was respected for that.  friends?  not really.  colleagues?   yes.  reminds me of an episode on House. . . . but that's another story.

once i was bar mitzvah and confirmed (when i was 18) i seldom ever went near a temple or schul.  i spent as much time in churches with girl friends and, later, my wife.  i take my religion seriously even though i don't even say kaddish (the prayer for the dead) for my parents.  and there's not anyone to say kaddish for me.  i offered to teach it to my step-daughter, but she said she'd only be able to do it in english.  so when i die, i die.  as the old rabbi's said, "the departed still live amongst us in the love that they expressed and in the kindness that they showed.  my name, my eternity, will die with me.  friends?  h*ll, i'm being cremated because thee aren't enough people for pall bearers or to make a minion to say kaddish.

sometimes i get so lonely i could cry (reference to C&W song).  for my birth family i was the "sacrificial lamb" to be blamed for all of the family's problems which gave all of them permission to abuse me however they wanted.  why don't i become a christian and accept the right hand of fellowship that they would offer?  because, please excuse me for saying this, but christianity doesn't make sense to me.  in Judaism, it is actions that matter.  in christianity it is belief.  if hitler would become a born again christian he would go to heaven?  i think not.  every molecule in every cell of my body rejects that belief.  if i stepped on any one's toes, please remember that this thread is about being alone, with religion and churches being a side issue.  i am expressing a personal opinion, nothing more, and would gladly give my life defending your right to disagree with my belief.

i have reached out to people in the past, but have always been rejected.  i was the Worshipful Master of my Masonic Lodge in Texas and served the normal term of one year.  when it was too painful for me to attend Lodge, not one of my "brothers" ever called my to see what was wrong and to offer any help.  when i attempted suicide because i couldn't stand the pain any more, not one "brother" phoned or stopped by.  i didn't get one get well card to go to h*ll card from these people who all purported to being my closest "brother."  not much different than a church, wouldn't you say?

i'm meandering and venting and getting very very tired.  pain steals your strength and your reason.  not a very compatible bed fellow, what?

there is an obscure english medieval morality play entitled "Everyman."  that the people of the middle ages lacked in original titles for their plays they less than made up for in their stilted style.  (that was supposed to be a joke).  at any rate, Death comes to everyman and tells him that it is his time.  everyman tries to take his possessions, but cannot.  he tries to take his good works, but they are lost to him.  he tries to take his friends, but, alas, they, too must leave everyman to his solitary journey to death.   so maybe i'm so so bad off.  i'm already pretty well bereft of possessions and have only had a handful of friends in the last 44 years.  i might as well quit while i'm so far behind.  should we tell Hillery?  nahhhhhhhhhh.

warren


That light at the end of he tunnel?  It's an on-coming train.
 
 


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/8/2008 10:38 PM (GMT -7)   
I can identify with alot of the things your saying warren. I've had only a hanful of friends myself since the days of high school and now, none except for thos new friends I'm meeting here.\
It is very loney when you CANT go out for a fun night versus you dont want to for one reason or another. I fancy myself a bit of an artist and have spent alot of time in solitude since it is such an alone kind of thing,. I credit that isolation and my spitituality in keeping me hanging on right now and not doing something stupid. Maybe a good piece will come out of this pain, they do say an artist needs there suffering! I guess I should be Picasso by now!
As for Religion I like to hear everyones belief even though its not PC to do so, but I've never been a very PC person anyway.
I heard this saying once, though I forget where.
Respect what others believe, were probably all wrong anyway
I like that saying, to me it means everyone has different beliefs and you can never discount what someone else thinks or feels because everyone and no one may have the answeres.
But I still ahve to credit my spirituality to keeping me from jumping off a cliff right now:):)
Just a little bit of non PC philosophy on a boring and loney thrusday night!

PC Hugs :)

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 5/9/2008 2:53 AM (GMT -7)   
I've always been a loner by choice. As my compounding ilness gets worse my old work buddies have seemed to abandon me. I come from a large family, they were all very concerned in the beginning, but slowly one at a time have stopped dropping by or just don't bother to even make a phone call. I had been calling them , I know they all have problems of their own , but when I am the one making the long distance phone call they should at least stay on the phone long enough to inquire about my health. Tlhey just brush me off as if they are just to busy to talk to me. I've decided to waite for them to call, fat chance of that happening. My husband is the only one I could talk to , but now even he is tired of hearing all of my complaints. He just even isn't interested in what is going on in my mind. I feel as if I have a very contagious disease that people are afraid to get even over the phone. My medical problems are not contagious to any one. I just need to talk about them once in a while. Get it off my chest. Maybe some reassurance that things will get better even though I know they won't. Enough said , Have to go have a little crying session by myself. It's at least good to write about( my wo is me.) june

Hope this forum has been of some help to everyone. It helped me. thanks for listening

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 5/9/2008 10:30 AM (GMT -7)   
CHUTZIE-- you are AWESOME...

Really you are..

Maybe we are somehow part of solution, nationwide..
the greatest thing we cna offerr another human being is love...

beatles sang that right?
maybe someday i will get more answers on the Triva night
btw - had fun despite my sleepiness

I dont think any of us.. is on a pitty me party

i dont hear that with in you

you ahve learned to survive.. and Be you
as I perhaps am learning to be me...

a friend once said you are a square peg. and everyone wants you to fit into a round hole...

lol

One of my former General Doctors, who after 10 years of learning to know me...
said you DEFY all classic text book reasoning
He learned very quickly to lsiten to me
Iknew my body & I was pretty clear / accurate on what
was going on
I think we all know...
I hope through this,....... site we continue to offerr one another Hope
to keep on keeping on


for now....
im off to pick up hubby.. (today is my day off *LOL* off? hmmm clean house... laundry/ cook supper/ pay bills/ makes calls / lol -- )

BRAVO to everyone who has a full plate despite CP
BRAVO
BRAVO
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/9/2008 2:09 PM (GMT -7)   
Chutzie is definitely awesome!!! Moderators volunteer their time to help create and maintain a healing place for us to come...so that we aren't so alone. I don't know if we can thank you and other moderators enough, Chutz, for all the time and energy you must put in. And I have tried a couple of forums that aren't well moderated and believe me it makes a difference!

I find it amazing that so many of us describe ourselves as "loners" and I'm getting the sense that was true before our illnesses or injuries struck. I am just intrigued by that. Maybe that has given us more fortitude to deal with being left alone on so many levels. So few people in our lives - at least in my life - understand I would love, love, love to be out doing things with them that I used to. The simplest things like going to a family birthday party are a challenge, let alone other activities. And like Freya has said about watching her husband go to work, the honest thing I have to say is that sometimes it's just too darned painful to watch people living their lives when you know you'll never be able to have that in your life again. Being a perpetual spectator. Of course we didn't see this in our futures, but now we're left to adapt.

Shelter, thank you so much for starting this thread. And thank you to each person who has shared so openly. Yes, it does make me want to cry to think of the losses in my life, and the losses in all our lives. Sometimes we need to laugh, but we need to make space for and honor that we also need to cry. On eachothers' shoulders.

Hugs to all my friends here at HW,

PaLady

Lonelyheart25
Regular Member


Date Joined Dec 2006
Total Posts : 22
   Posted 5/9/2008 3:58 PM (GMT -7)   

With the exception of my parents, I’ve been alone for most of my life.  I’ve never had a girlfriend or even been on a date, and I have no friends.  I’ve had social anxiety disorder and avoidant personality disorder for most of my life.  However, after developing chronic pain, my psychological disorders went from moderate to severe. 

 

I suffer from a neck pain of an unknown etiology.  Since there is no definitive proof or test that can verify my disorder, people often do not take me seriously.  It is hard to explain a disorder to others that I can’t even understand myself.  Because of this, I don’t try to explain nor do I expect sympathy, compassion, or even empathy.  Instead of trying to explain myself or opening up to others, I just avoid people (except my parents) as much as possible.  I only communicate enough to do well at work and at school. 

 

I’m not completely alone.  I have a good mother and father, and I’m thankful I have their support.  Their support is what keeps me from losing my sanity and becoming severely depressed.  My dad also suffers from chronic pain so he can relate.  My mom doesn’t suffer from chronic pain, but she is VERY nice.  I don’t think I would be alive right now if I did not have such a great mother.   

 

Some of the things I like to do to feel less lonely are read, exercise, visit forums, and daydream about having a nice girlfriend. 

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/9/2008 4:23 PM (GMT -7)   
Hi, Lonelyheart,
I'm glad you decided to post. I have a hunch you may be as nice as your mother, and that there may be a young woman out there who would be glad to be your first date. But I know with anxiety coupled with chronic pain the challenges you face are very real. I hope you're getting treatment for your social anxiety, because there is treatment for that even if your chronic pain can't be resolved. Who knows, maybe you'll "meet" someone nice on one of these forums!

You're so right it is hard to find those who will understand. But you've found us here. I also hope you'll continue trying to find some answers as to what may be causing your pain - and maybe there will be a cure or at least a way to reduce the pain. My neck pain started when I was in my 30's and I still don't know what caused it all, but I worked long and hard with a physical therapist, changed my ergonomics, had carpel tunnel surgery and was able to manage the neck pain for over 20 years. Actually, I still manage the neck pain; it's the lower back issues that have really pulled the plug on my health. So I encourage you to keep seeking answers, and join us here on this forum. I can say this is a wonderfully supportive and caring place, as I think this thread proves.

PaLady

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 5/10/2008 6:25 AM (GMT -7)   
wmnak,

You can say Kaddish anytime you want for your folks. In fact, I believe G-d hears all prayers so no need to be in shul - or anywhere specific to say a prayer.
Prayer helps me alot with my "connection" to what I feel is greater than I & reminds me others may have it worse & might need my prayers too. I take a liitle time out for a prayer or meditation or breathing exercise whenever I feel so inclined - it helps me focus on something other than my worries. If I pray for others - maybe just maybe I'll receive the same grace. Not conditional but I have agreed to be a member of a prayer circle and for what its worth - it does offer me some comfort - in the belief we are all connected in some way and that others on some level really do care and are praying for me too. I know caring folks are out there & if I can offer a small amount of comfort to somesone else who may be suffering - it comforts me as well. Just like the very caring folks on this forum!

Hope this helps,
Cary

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 5/10/2008 5:59 PM (GMT -7)   
Sometimes it helps me, when I'm being reminded of what I ahve lost...
to what have I gained... or to begin to count what I have as Blessed
I usually start with YAY I'm in Canada... a great country...
I do have children, and a husband, I am thankful for each one of them...

May I take you on a virutal walk ?

A week ago, I had this vision pop in my head

a path, in the deep forest... with trees 200-300 feet straight up all around me
I was small in comparision to their Majestic Heights.
I noticed I was on a path... laid out before me... it had already been made
I saw the Sun shineing through the tops of the trees

by the angle I knew it was som where between 1-2 pm

I was being called to this path , to walk this path

and I accepted the invitation

I told my reflexologist what I saw as she worked on my feet,
she told me she knew a place just like what I described...

and the next day................. I went there


at the beginning of the path there was a walking stick waiting for me to help me along the way

My husband & I walked slowly into the ancient forest... noticing the trunkcs & teh abrk.... and the brances began 100's of feet up...... the forest floor was covered with small brush.. but most the leaves from last fall

it was quiet...

as we walked I could hear the sound of a bubbling stream below.....
we where walking along the edge of a hillside.... with a small river below....

I could hear birds singing, and ducks quacking..... as they came in for a landing or flying off

about 10 minutes into teh forest.... I realized............ I had been sooo focused on my phsyical pain.....
I FORGOT ....... literally forgot about all the nature and beauty we've freely been given to play in, live in laugh in SING in................ while we are here on earth

WOW

I felt called to come abck to LIVE Life...

now I Invite you to LIFE also....

ttfn
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/10/2008 9:11 PM (GMT -7)   
Shelter, I do a meditation just like that!
Or I did before I got so down in the dumps. But you've motivated me in you 'virtual walk' to maybe start doing my meditations again!
Guess there was a reason I couldnt sleep tonight, that little nagging voice saying...Go to the forum, go to the forum!!

I usually like to imagine the stream is the water of life and I take a little soak in it.

I wanted to say hello to you lonelyheart! I'm so glad you have such supportive parents and a father who can maybe understand what you're going through. I hope you find some answeres for you neck pain real soon.

Just like PAlady, I am in awe of how many of us considered ourselves 'loners' even before we began suffering from chronic pain. Almost as if we were all given the tools we needed for the future to survive feeling so lonely and abandoned at times. Thank goodness my Siblings are both in great health, but i could never imagine either of them out of the spotlight, they are both social butterflies from even childhood. It just gives me a little reassurance that there really is a reason for everything and in time we may look back and say , oh maybe thats why we experienced the chronic pain!

Hey-anything to put the pain into rhyme and reason!
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 5/11/2008 8:24 PM (GMT -7)   

cary,

thank you for your post.  i didn't really expect any - i was just feeding fuel to the fire that keeps all of us  burning.  inn fact, kaddish is said first at the funeral and then at the house of mourning, when there is a minion.  after that, by some traditions, the eldest son says kaddish on the yartzeit (anniversary) of death.  no minion is required and this is a very private thing.  but there are as many traditions as there are jews!!  yeah

i agree that the gods hear our every prayer and thought and respond in some fashion.  no one is ever truly lost or forgotten.  i remember a City and Guilds student that i had when i taught at a london borough polytechnic.  she was a cute a a yorkie puppy dog - and just as chipper!  she was having problems memorizing mnemonic computer languages.  so i said, "STA" what does that mean?"  "I don't remember, sir," she replied.  "well the text book says, "store to accumulator, but i think it's more appropriate to think of it as 'stash'!"  that was the end of her problems with computer languages.  i suspect she still remembers me - not my name, or what i look(ed) like, or my voice.  but somewhere deep inside this bright, intelligent lady is the memory that someone, somewhere, told her that "STA" means "stash."

i DO believe that prayer works.  my father was in an industrial accident whilst i was living in england and was not expected to live.  i was a member of an ecumenical (all faiths as opposed to non-denominational which means sharing a core of beliefs) metaphysical healing circle.  his drs called it a miracle.  my father was walking and out of the hospital in less than a month.  somehow, i was not surprised.

being a member of a prayer circle can be an enlightening, spiritual experience.  just one word of advice:  never say "we" and "them."  we are all sons and daughters of the universe who share time together on a small blue planet on the edges of a minor galaxy.  how petty we are to make war and to murder in the name of our belief system.

i've probably said too much already.  thank you, again, for thinking about be.  i am grateful to receive but never expect reciprocity.

warren


That light at the end of he tunnel?  It's an on-coming train.
 
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/12/2008 6:04 AM (GMT -7)   

I know exactly how your feeling.   When I got real sick with my Crohn's Disease about 10 years ago, I was married

to who I thought a wonderful guy.  When I got sick, he couldn't handle being with someone who basically was "damaged" to him. We divorced.  I don't look back though.  To me, if your not going to be supportive of me for all my "issue's", then I don't want you in my life.  I don't need the negitive people in my life.  I need the people who are going to support me, care for me, and be understanding when I am sick.  I have since found a wonderful man who has been my husband for 5 years now.  We had a beautiful son 2 years ago, and I couldn't ask for a happier life!!   Life is too short to allow people in your life who are going to take you down.  I have lost a few friends through it all, and I have a gained many more.  I have to keep life around me very postive. 


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 5/12/2008 6:52 AM (GMT -7)   
Hi Warren,

I am a Reform Jew but grew up in a more conservative American family. I too was denied saying kaddish (because I was a "girl"). Just trying to offer you a little support and kindness. You are corrrect about "we" and "them" - I will try harder to keep this in mind.

Love, Cary

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 5/12/2008 4:05 PM (GMT -7)   
 
Im not sure what color I want to "be" tonight--
sometimes  I write... based on my feelings & experiences of the day; some times I feel a color
...
 
Lend me your ear ?
 
My pain is not my own.. - "How's that for an    subjective thought";  that randomly just opped into my head...
 
I did learn some time ago that   our bodies are interestingly  ... well  wonderfully  made...
 
that chemicals are prodiced that goe rushing through our blod stream,   based on   our thoughts, ad  are also  stimulated by all 5 senses...
 
in saying that.... here's   a thought
 
I work around  people in pain all day....   there is sorrow  in deaths...
there is compassion  while visiting those who are trying to adjust to new surroundings, when already their  dementias'  dont allow them to make a NEW Memory...
there are all kinds of interactions a day with poeple,  from all walks of life.. who are in the end stages of this LIFE...
 
some times I think  we "take " on  others   pain not intending too but.. by  being    perhaps    triggered? by   our response to their pain, their situations?
 
I have nt raed this any whrebefore... but I think I'm    on to something.....  
 
LOL
 
BY JOE  I think I got it !
 
I read once taht for every negative   we must ahve  40 postivies to erase & repalce it in our memory
 
 
so  we MUST   ABSOLUTELY MUST   focus on what is GOOD... Positive,  Lovely.. GOOD thoughts, Good reports....
even   GOOD music.. poems   
Cognitively     surround yourself with GOOD input....
 
Good food,  Good sights, smells,  sounds,
 
ahhh
 
YES  yeah
 
its making sense...
 
Please  tell me if any  of this makes any sense... and hits a  " HEY  THIS is TRUE" Button  or have I been  alone too much...
 
 
ttyl
 
 
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia , Kidney Stones, Esophegial Spasms,(SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord 

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