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Posted 3/21/2009 2:40 PM (GMT 0)

Welcome Diggsy! You have found the right sight to be at! I am also relatively new here, but if you have Chronic Pain this is definitely the place to be, the folks here are genuine, compassionate, and understanding and just plain terrific! You can be your self here and people understand, because we all know what it is like to have pain!

 If I may suggest, you should start a new thread introducing your self an tell us a little bit about your self, just what you are comfortable with sharing, go back and check most of us have done that, I did it about a month or so  ago, so you can see an example.

 Again I Welcome to this forum,

White Beard

Posted 3/21/2009 3:17 PM (GMT 0)

Hi diggsy,

So glad you found us too.....we support each other and understand each others challenges!!

I still continue to push myself and like you, suffer for it later....stupid maybe, but it does provide me with personal painful satisfaction!!

Please tell us about yourself and WELCOME to our FAMILY!!

XXOO
Patti

Posted 3/22/2009 5:07 AM (GMT 0)
Straydog

As belated as this is, I want to Thank-You for your kind words of encouragement, and you are very preceptive, there is allot more to it!

I keep going back and reading your long post in blue, there are so many things that you mentioned, that,well yes I guess people do change, and...... well ....... all I will say is: Susie I do wish you only the best!
You know what you said about friends:("In reality, we really only need one good true friend, they are worth more than a 1000 acquaintances.") is so true! And some times it is really tough when you find out you really don't have any "true friends!"
Good Luck to You Straydog!
White Beard
Posted 3/22/2009 5:37 AM (GMT 0)
White Beard,
That last sentence you wrote really hit home for me. Although I recognize my isolation is in part my doing, and started before I was injured, I also know since I've been injured I've been disappointed by the few people I thought would hang in with me. Guess I can understand to an extent when I have to turn down things, don't have the energy or the money to do the things most people want to, that after awhile people just quit calling. There weren't a lot calling to begin with. My phone rings very little anymore for personal reasons. When I'm around my cousin her cell phone is always ringing. Or of I'm talking to the few close relatives who had hung in with me, their phones beep with another call. Or they have to go somewhere, or attend to their families. I understand, but it's hard when I don't see how I'm ever going to get a real life again.

So much revolves around our health and our abilities. I'll dig up that identity thread again one day soon!

PaLady
BTW fatherjohn hasn't posted in a couple of days. How are you doing, FJ? I recall you weren't doing very well.

Post Edited (PAlady) : 3/21/2009 11:40:31 PM (GMT-6)

Posted 3/22/2009 5:56 AM (GMT 0)

Greetings all. I have been reading the posts as I have had to take a break for a few days.

We can see that live never stands still and neither do our relationships. As was stated, we only need on true friend as they are more better that a thousand aquaintences. That is true in many respects but it is sure nice to have some others around who give us support. It hurts when one that we think is a friend and we have relied on does not support and show they understand us in our time of need. The closer the relationship the more it hurts. I believe that is one (one of many) of the reasons that divorce hurts so much. White Beard, it doesn't matter who files for the divorce, the hurt is still there (on both sides).

Diggsy, welcome to the forum. It is great to have connection with people that normal like us. I also try very hard to not let my pain get in the way of relationships. I went over to my son's house to hook up his washer and dryer. He is a very good son but not overly mechanical. He is the artistic one. The space where the washer and dryer fit was very cramped. He was trying to help but I finally felt I had to crawl back of the washer to help. The problem is I have gone through 3 days of non stop pain that has to the point I did not sleep for three days and walking is a difficult chore. My wife was watching and was so worried, my son knew I hurt but also knew I want to help so bad.

Posted 3/22/2009 7:10 AM (GMT 0)
PAlady

I can identfy with every thing you've said, it hard!! You know my youngest daughter is down visiting, she is a nurse at Mayo Clinic, anyway her Grandpa is in the is in the hospital so she came down, and this evening she came home and had supper with me! It was good to see her, but she starts in about me needing to get out more, and doing things meeting people. You know it just about half peeve me off, I mean I know she is right an all, but she acts like it is just so easy, but it isn't! When you hurt you don't feel like going out and meeting people and making new friends and doing things. At least I don't! and your right PAlady so much does revolve around our health and abilities! And I am with you about ever seeing a real life again! At least not the type of life I once had!

fatherjohn my daughter also lectured me about not over doing it, when fixing up the house to get it ready to sell. She apparently heard about last weekend, she tells me just because her mom is doing allot of the outside work doesn't mean I need to be doing allot of stuff too! I told her it was a GUY thing!    smilewinkgrin I can identify with you fatherjohn even when we know we don't feel like doing things, or know we shouldn't be doing the stuff, we still do it anyway, and then pay the piper later! But what you said is so true, "I hurt but also knew I want to help so bad" Your son knew it! and you knew it, and that is why you do it! We all want to feel usefull and I think we want that even more when we know we are so limited!

White Beard

Posted 3/22/2009 10:33 AM (GMT 0)
White Beard, I think those around us know its a guy thing. I don't think they always understand why we have these needs to be doing the guy things. I went to the store with my wife to get a few things today, I told her that I needed some potting soil and of course I needed the big bag. Managed to get it in the shopping cart but could not get it out when we got to the car. It was quite a sight, my wife and I trying to reach down in the cart. I had to put my cane doun but I did not have enough in me to get one end. If I wasn't hurting so bad I would have been laughing at the whole ordeal. Several months ago, I was at the grocery store by myself. I was wearing my back brace and walking with a cane. They asked me if I wanted help out and this wonderful little old lady comes over to help me. It was so funny. At times we need to laugh, even though we struggle trying to do the guy thing.

Posted 3/22/2009 3:42 PM (GMT 0)
Hi all, It is really great to find this site...I am new to this as well.  I have been suffering with chronic pain for a relatively short time.....I guess it’s been a year and a half since I had any idea that this was a chronic condition....it feels like longer though. I spent a span of 6 months out of work going from doctor to specialist to other specialists.....looking for a diagnosis and have had no luck. It has been so frustrating; words can’t begin to express how hopeless I feel sometimes.  I have reached some level of acceptance over the situation, and now I feel like a new battle has begun...this one much harder to deal with.  My relationship.      I came across this topic the other night and began to cry as I was reading the replies.  I am 31 years old, and have been engaged for almost 2 years, planning to get married in September of this year.  My fiancé and I got engaged before I had any clue what was really going on with me health wise.  Fast forward ahead to today and I feel so alone.  This illness has affected my relationship with my fiancé more that I ever could have imagined.  I spend most of the time crying because I try to move along with my wedding plans and can’t help but think that it will never take place.  My fiancé is a wonderful man, yet he has a real difficulty accepting my situation. Things between us have been so stressful and tense the last 8 month especially, we fight all the time...he is so miserable most of the time. We’ll spend weeks just dealing with the tension...let it build up...then it all explodes into a fight and he tells me he is not happy.  I just don’t meet his expectations.  He will cite something superficial like I didn’t wash his clothes early enough this week or he had to do the dishes one night and he hates that.... Absolutely crazy stuff.  He would then come to his senses the next day...apologize...and tell me it’s not me...all him.  He’s stressed about work etc.  Then the cycle starts all over again.    He finally got honest with me and told me that he has built up resentments against me.  He has a really guilty conscience because he feels responsible to fix things.  And he can’t fix this.  And he feels sexually neglected and that is a huge part of a relationship for him, yet fells guilty because it is so selfish (that’s why he doesn’t approach me) and he feels guilty every time I cry because it is his fault.       At this point we are so apart from one another....and we used to be so close and I want that back in the worst way. I am so hurt by this whole thing...I feel like I’m not good enough...can never be good enough.  I have tried everything....always on eggshells     I get so resentful of my disease! I feel like another woman said in an earlier post...that she went from 40 to 80 yrs old over night!  I get so upset because I felt like we are not going to get through this!  In sickness and in health...???  How can he vow that? I was so jealous reading the first few posts where women described that they didn’t deserve the husbands that they have...so supportive and loving...  I guess I’m being selfish now...but honestly, I feel like I do deserve that! I feel really alone most of the time.  I have a lot of friends who are getting married, or who were recently married, and they all tell me that couples go through these things before getting married.  They fight...that’s part of it.  But I can’t help but think they do not really get my situation.  Have they ever been told that they are resented because of an illness they have no control over?  I can’t help but feel like this is not what "most couples go through".    Again, I am so relieved to find this site...I read some replies and you were telling my story! I have had experiences in the past that have shown me that nobody can help me like someone who has been through the same thing. Experience is everything.  I am hoping that this is a place I can come to be understood. I know I wrote a lot and I am probably all over the place. I guess what I am really looking for is hope.  Hope that it will work out okay. Has anyone had experience with this and gotten through it? And by gotten through it, I don’t necessarily mean that I want hope that we will get married and live happily ever after.  I guess I'm asking for evidence that things are okay no matter what happens.
Posted 3/22/2009 4:44 PM (GMT 0)
samiam

I am glad you found this forum, you will find you will always be Welcome here! It is unfortunate at your young age that you are having such problems, but Chronic Pain does not have age limits or boundaries! First off I would like to assure you that you are not alone in your feelings, and hopefully that might be of some comfort to you. I don't mean to be prying but do you have a diagnoses as to what is causing your CP?
You mentioned:("My fiancé and I got engaged before I had any clue what was really going on with me health wise.") ("This illness has affected my relationship with my fiancé more that I ever could have imagined.") (" get so resentful of my disease!") From what you wrote it appears that your fiance is having a difficult time accepting what ever is wrong with you. I am sure that is very difficult for you, as it appears the you have more than enough problems trying to cope with your condition, and then also having to deal with your fiance. You are not wrong to want to have a husband that is loving and supportive of you, even with your illness! Although you might not appreciate hearing this, if this person is not loving and supporting of you now, then I urge you to step back and reexamine your relationship, it is far better to find these type of things out now before you get married, than to find out afterward! Of course there is alway hope, but please do not procede with a wedding based on the hope that he will change, and hope that it will all work out later. That is no way to enter into or begin a marriage.
May I recommend that you also start a new thread introducing your self, a sharing with us what information you are comfortable with, about yourself.
Again samiam I Welcome You
White Beard
Posted 3/22/2009 6:33 PM (GMT 0)
Samiam,
I also want to welcome you, although I am so sad to see you here, especially at such a young age. But we do have many young members of the forum. Please do as White Beard suggested, and introduce yourself in a new post. I might also suggest you use a slightly larger font to make it easier to read.

As far as your relationship goes, White Beard could not have given better advice, although I know it may be hard for you to hear. I would strongly encourage you to find a good couples counselor and be as honest as possible with your feelings before you enter into a long term commitment like marriage. Yes, CP takes a toll on relationships, as you read here, but the resentment building in your fiance is not a good sign for the future. You have to ask yourself if you would want to live like this for the rest of your life, not depend on things changing. Because Chronic pain is just that - chronic. And depending on the cause, it may only be able to be managed, not cured. And you may have many limitations. You do deserve a spouse that understands that and wants to be with you even with that in mind, and that may take a special person. I hope some of the others who are married will respond and give you other thoughts.

Again, welcome.

PaLady
Posted 3/22/2009 10:56 PM (GMT 0)

Dear Samiam,

I am so so sorry that you are in CP, I am even sorrier to hear of your problems with your Fiance!  I am the woman whose husband said I went from 40 to 80 overnight.  I agree with White Beard and PALady, do not get married until you figure this out.  Marriage will not change anything, you want to go into marriage in love and secure in your love for sure!  I hope you will share your story with us, if this is a permanent situation for you there are many emotional ups and downs, limitations and unknown/unpredicted things that will arise.  You will need unconditional love and support as will he!

We are here for you! 

Patti

Posted 3/23/2009 12:06 AM (GMT 0)
Dear FatherJohn
Thank you for bringing up the topic of how chronic pain affects those around us. I am extremely lucky. I met my partner when I was learning to walk again. He has never known me not to be in pain and yet we are together. My disability and chronic pain were never a consideration when he decided that he wanted to get to know me more. He has since become my carer. We do not live together as we both believe that time apart is as important as time together so we can do our 'own things'. He loves computer games and playing on his PS3 - I like to read and watch TV. We see each other everyday. He picks me up and drives me to and from work everyday. He also cooks all of my meals and does the weekly shop. After we've had tea he goes home and then returns the following morning except for Friday and Saturday nights when he stays over. As well as taking me to and from work he takes me to all of my appointments, he has learned from the Physiotherapists how to manipulate my legs, he takes me to hydrotherapy and all the various Doctors and Hospital appointments I need to attend. Life is not always a bed of roses and we do have our arguments but they are not very often and they usually coincide with me being frustrated at or the amount of pain I am in. I did have an awful period last year where I cut myself off from my whole family as I tried to come to terms with my disability. Other than work and Medical professionals my boyfriend was the only person I talked to. During that time I learned about 'acceptance' and 'anger management'. I had to learn to accept my disability and get rid of the anger within me which was caused by my disability and pain. My boyfriend never said directly that I had difficulties with these two issues but he guided me in a round-about way. I am so glad he did. I am a much happier person and we are stronger as a couple as a result of confronting these issues. The thing I think that we should always do if we are in a relationship is tell the other person how much we love them and thank them for being there for us. I used to be a carer and so I know how easy it is to feel that you are being taken for granted and the ill feeling that follows. It is sooo easy just to tell your partner that you love them and thank them for everything that they do for you. My boyfirend says that the worst part for him is when my pain is so bad that I'm screaming and there is nothing he can do to take the pain away. I tell him that just by being there it helps so much. I think sometimes that those of us with chronic pain become so overwhelmed with our own pain we forget how it affects those around us. How seeing us in pain hurts them. I know I am so lucky and I thank my boyfriend and everyone else out there who help those of us who suffer with Chronic Pain. Thank you - you are all angels. :-)
Posted 3/23/2009 12:57 AM (GMT 0)
Samiam, as others have done, welcome to this forum. You will find others here that deal with some of the same issues that you face as well as many different avenues to deal with them. There are times we joke around and have fun and other times when we cry together. Some of us have learned that crying is part healing. CP is a very complexed disease and so are those that suffer the unmerciful effects. We have different threads that deal with issues we face. There are times we just want to vent because we know that we encounter a non-judgemental attitude from others.

This thread is about how CP affects relationships. In one sense you are lucky with being able to see how your boyfriend is responding to your CP. Part of the reason I say that is for some, CP destroys their marriages as well as other relationships. I highly recommend that you and your BF get some counseling before you go much further into the relationship. If there are unresolved issues now, they will have a tendency to grow and get worse. that does not mean there is not hope. You need to make sure both of you can handle the issues with CP before you get married. I have dealt with CP for 11 years. I have a wonderful wife who has walked through this with me but we built our relationship with the right foundation from the beginning. I have also done pastoral counseling for over 25 years. Even in our marriage we have to work through the issues as well as the one that confront every marriage.

Sandy, Thank you as well for joining us. You bring up an important issue. That issue is one of telling our mates, partners or even families that we love them. That can be done is so many different ways. There is a book called The Five Love Languages. I use this with my students and basically the authors state that there are 5 different ways this takes place. For some, words of affirmation is important, there is phyisical touch (not nesessarily sexual), acts of service (deeds done for the other), the giving of gifts, and quality time. I don't know if this is an exhaustive list but it shows me that love is not just something we say but something we do. It is not a feeling but an attitude. For some, words of affirmation is more important that touch and some receiving gifts is more important thanquality time spent with the other. The idea is we find what or spouse, mate, partner etc responds to and then we can show the more meaningful love. That does not mean we only concentrate on one and neglect the other as variety is good. Anyway, thanks for jolining us.

For all of us, show someone today that they are important and that they are loved. That is a basic need of life. Blessings! 

Posted 3/25/2009 10:18 PM (GMT 0)
First, welcome to all the new people here. I am so sorry for the reason you are here but I am happy to meet you.

Second, reading all the posts in this thread has really made me cry. So many of you don't have the support that you deserve. It just breaks my heart to read all that you are going through on top of the CP and other issues. It really breaks my heart.

My husband and I had been married less than 4 months when we had our accident. He was hurt too, not as bad as me, but still pretty bad. It is really amazing that either of us even survived the wreck let alone recover from it. He has been my lifeline. When I first came home from the hospital after three weeks, I was in a hospital bed for almost 3 months. I was not able to do the simplest of things. He was there, with his broken back and dislocated shoulder, to take care of me. I mean the man had to do things that no husband should have to do for his wife. And he did it all without complaining. He still, 4.5 years later, does not complain much at all. I have 3 children from another marriage. My oldest, then 19, had moved out on his own, had a great job and all. He moved back home to help take care of me. The other 2, another son- 17 and a daughter- 15 learned to cook and picked up with all the house work. They really all pitched in to make things work. I cannot imagine going thru this without them. I have no other family to speak of. My inlaws are the greatest. My MIL and FIL stayed with me the whole time I was in the hospital, which was 180 miles from where we live. They still are there for me no matter what. When I go to their house, the recliner is mine,lol They will make anyone that is in it move.lol I am very lucky to have the wonderful support of so many people! I honestly don't know what I would do without any of them.

Late at night, after everyone has gone to bed or to work, I get to feeling like I am such a huge burden on all of them. And I know I am. I have offered my husband a guilt free out and he got mad at me for even thinking that he would leave. My CP has actually brought my family closer.
Posted 3/27/2009 3:22 AM (GMT 0)

Stillrecovering, (but gaining every day) I just thought I would add that part, I can understand what you meant when you told your husband he had an out of he wanted it. I know that I did not want this life that was handed to me but it is what I have so I work on acceptance. That does not mean that those around us feel the same. In fact, they might be more accepting than we are. It is not pity, nor is it a martyrs view. I shared on another post that love has to be demonstrated and when those around us accept us in our pain and limitation, they are demonstrating a love that goes beyond what we expect. It is difficult to understand but that is what makes is so true. I have also read in posts where not everyone has this experience with those around them. Some still live in denial maybe partially because they don't know how to accept it or they can feel inadequate. I am sure there are those that live in disbelief and think that our CP is just in our minds. My Boss came to me and told me that if I just quit going to doctors and taking meds and just pop a few IBUs I would be much better off and find that the pain would go away. I am so glad that my family is not like that. Don't forget to show your hubby that you appreciate his faithfulness. We can't afford to take these relationships for granted. Blessings on you and your husband. 

Posted 3/27/2009 5:15 AM (GMT 0)
Fatherjohn,
You know I wondered what you thought of the D&A world now that your vision is through the eyes of a CPP. It has modified my view of things - not abuse or addiction, but the rigidity and close-mindedness I think is there in parts of the system - like with your boss.

Probably off topic for this thread, but I wasn't surprised at what he said to you, but it showed his ignorance. There is a small overllap with CPP and addiction, but it's a small percentage of the population. Most people think just the opposite - even the professionals.

PaLady
Posted 3/27/2009 7:28 AM (GMT 0)
A statistical fact. In Belgium, 70% of the relationships fail within 1 year in case one of both partners suffers a long-term (1+ year) or chronic illness. Breakup usually occurs after 6-12 months. These figures will undoubtable very from country to country depending on social and cultural circumstances. Study done by the National Council of Physicians.
Posted 3/27/2009 10:14 AM (GMT 0)
My husband and I have been married 38 years. I was one of the women who reported
that I was lucky to have him - don't deserve him. He is so good to me. How can
anybody be that good? I dunno. I'm not. I couldn't put up with me if I were someone
else. I can't put up with me being me. The is a terrible situation.

Especially lately. The economy, you know. OH THE ECONOMY! We've been robbed
of everything. I'm gonna call the police.

I sit in my black polka dot Lazy Boy and watch TV in the semi gloom. I'll go out in
the back and take a few puffs of a cigarette. I shower. I brush my teeth. Sometimes
that's it.

I carry around my one-person electric blanket like a two-year-old.

Please don't tell me to stop feel sorry for myself or to stop whining. I want to say
exactly what I said. I will come back and read it in a few days and perhaps answer
me. Or kick my but t.

Samiam ... (Cute name) Time will tell with your financee. Wow! Planning a wedding with
chronic pain would be very difficult. The past two women I've spoken with have had breakdowns
after their huge gala. I only made it to one - live band, fireworks, sit-down dinner. Nice! My
husband and I should have put $200.000 in the envelope. We didn't. I don't think anybody did
except their relatives. Close as in Mom and Dad.

Samiam, could you make your type a wee bit larger. "The better to see it with, my dear," said the
_________<--name that literary character.

pamiam :-)

Post Edited (Pamela Neckpain) : 3/27/2009 4:30:10 AM (GMT-6)

Posted 3/27/2009 10:36 AM (GMT 0)
Will wonders never cease?

I was about to hang it up and grab my blanket head for the hay when
I ran into fatherjohn's post. I think it's called Serendipity.

"Don't forget to show your hubby that you appreciate his faithfulness. We
can't afford to take these relationships for granted." fatherjohn

I'm worried that I've done so much injury to my relationship in just the past
two days that I will never be able to get it back. Yes, I did that much
damage! :

Me <--kick, kick, kick

Tomorrow will come.

pamiam

Post Edited (Pamela Neckpain) : 3/27/2009 4:40:40 AM (GMT-6)

Posted 3/27/2009 3:51 PM (GMT 0)
Pam...whine away...I think that is one issue we tend to have with CP. We feel bad, robbed even and we revert to the 2 year old who holds his/her stuffed animal and just wants mommy or daddy to come and fix it all. Yet we can't(and we all know that too well...we are all to "grown up"). We don't want to burden those we care for, those we love. Some of us hurt ourselves trying so hard not to be a burden...to try a be the person that our loved ones once knew, that we knew...

but we gotta be able to rant somewhere....we have to be able to scream...to yell...and then to comfort ourselves, find the most cuddly blanket, or pillow or stuffed animal...I'm so glad (if I dare be so presumptuous)that we have each other...it helps a bit...I can rant about the unfairness of it all and not put it all on my DH.
Posted 3/29/2009 6:44 PM (GMT 0)
One thing I've been thinking on for quite awhile(after reading many posts on the CP and Crohn's forum)...Many of the people on this site are very, very intelligent. IMHO, we are very cognizant of our family and friends, and we don't want to hurt or harm them...so we keep so much, too much, inside. Hence why, again JMHO, we gravitate here. We hurt, we are scared, and we feel oh so much, but we don't want to burden, or harm those we love...We are looking for a healthy way to slowly release some of the awesome, and tremendous feelings we have, an escape valve if you will...
Posted 3/29/2009 9:36 PM (GMT 0)
Becoming,
That's a good description...an escape valve. And keeping so much inside. I'm not married, so for me it's not about a spouse or children, but my family has always seen me as strong. And I have always seen me as strong. Have always been able to cope on my own, to a large extent, until I was injured. And even though people have helped, they don't get just how bad it is inside me. How much I want to scream 'I Hurt! and "I need your help way more than I can say". It's woven in with our changing identity, at least for me.

Don't get me wrong - I have asked for help. I have had to learn in these past few years; had no choice. But the thing is, I 'look" relatively ok, as do many of us, so it's hard for people to get that I'm NOT ok. And I still need a lot more help than anyone realizes. Than anyone is offering. The only thing left at times is for me to literally beg for it, and even then I'm afraid my family would help a little, but still not get the extent of it. Sometimes I'm reminded of that commercial of people who "almost helped". Anyone see that? Sometimes I really understand how someone goes down the tubes with family all around them who don't see it. Who almost help. Caring people, but you get tired of explaining it to them over and over. So you just make do, hold it in, and try to get through the next day.

Uh-oh. Rambling again. :-)

PaLady
Posted 3/29/2009 11:04 PM (GMT 0)
Dear PALady
I understand totally what you mean when you say that you 'look' relatively healthy. I do too. I am also a strong character and have been regarded by my friends, family and colleagues as such and consequently, I have found it very difficult to learn to ask for help.
Because I am seen as 'strong' and because I want to be as independant as I was before I became disabled I feel that I have made things worse with my work colleagues. They appear to think that there is very little or nothing wrong with me and I have never had the patience to sit with them either in a group or individually to explain everything that is wrong with me. I think it's because pain is so difficult to describe and because everyone's perception and experience of pain differs. I finally decided last week to address this matter and have produced an Information Leaflet called 'My Disability and Me'. It explains in detail exactly what is wrong with me, how it affects my day to day living, the medication I take, the side effects of these medications, what I am doing to help myself as well as a list of emergency contact numbers. I have given a copy to my manager and his two immediate managers . My Union also hold a copy. The leafelt is available for anyone who is interested and it ends- 'if you have any questions or there is anything in this leafelt you do not understand please ask me.' The response has been amazing. My bosses feel much better that they actually know more about my condition. When my sister proof read the leaflet she couldn't beleive how much she didn't know about my condition and how much pain I am actually in. I sent a copy to my Mum too whose response was the same as my sister's. As yet, I haven't had a talk with my colleagues on my team but my boss and I will be discussing this next week. I also found it very theraputic to write
Perhaps writing your own 'lealet' would be beneficial. You can give each of your family members a copy. Give them enough time to read and digest it and then arrange a meeting with them at a time that suits everyone. You could have an open and frank question and answers session. This way you won't have to constantly repeat yourself, everyone will have the same understanding of waht is written and most importantly you can take that opportunity to expalin the type of help you need from your family. Hopefully, this will stop the 'almost helped' syndrome. Remember our friends and families are not mind readers. Their perception of our illnesses, conditions and pain is based solely on what we tell them. We must therefore take some responsibility for their behaviour. If we don't tell them exactly what we need [either emotionally or physically] how are they supposed to know? We are responsible for letting our friends and family know what we need, no-one else. I really do hope this helps you. With any luck, you will no longer need to 'hold things in' and you will be able to live each day rather than 'coping' through each day. Take care of yourself. wink
Posted 3/29/2009 11:26 PM (GMT 0)
Sandy,
I don't know if I ever welcomed you to the forum, but consider this a belated welcome!

Your leaflet is a wonderful idea - probably for lots of people, even between spouses (although I'll let the married people speak for that!). I'm thinking it also may be a good thing for anyone (like me!) applying for SSD, and also in the writing of it, may be therapeutic.

I think one problem I have is that I have tried to explain and ask for some things, but people are busy with their lives, and they do what they can but sometimes it's just not enough. My one cousin now understands more since her divorce, because she now lives alone. People who don't live alone (no offense to anyone!) I think have a whole different view of life nad the world. I'm not saying living alone is a great idea; I really never thought I'd be alone at this stage of my life, but it is what it is. I am thankful for my extended family, and when I had surgery they really all pulled together for me. I think I feel guilty now (ok, leads us into another area maybe?) because I can do so little in return. Maybe I can bake a pie or something, but I can't help my goddaughter with her two young ones. They're very active, and even when I visit I'm afraid of tripping over them, toys, animals, etc. It's a very active household. And they're very busy trying to get through their days.

If I could help others more in return - in ways they need - I'd feel less guilty asking for more help. Anyone else feel this guilt?

PaLady
Posted 3/30/2009 2:48 AM (GMT 0)

But don't forget PaLady you help so many right here at this forum, I know you have helped me! And I have seen so many of your post and your advice is sound, and I can tell it is based on experience and knowledge. And it is worth more than you will ever know! To be honest this forum is lucky to have you,  I don't know maybe we are all lucky to be here in a weird type of way! But I  do feel I am the lucky one, I have met you and so many others here at this forum, and I  feel like I have found a new home, new friends, a family of sorts that I can be open and honest with!

You know I see others with there problems, especially with medical and insurance, and I feel guility, I know I  am fortunate or blessed when it come to that. And I do wish I could be of  help, to you PaLady and also to so many others!  I do wish I was wealthy but I am not, and my future  is so uncertian right now, it is scary!. I guess it is the fear of the unknown that makes it  so difficult! I guess I am rambling again!

White Beard

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