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Posted 5/17/2007 10:57 PM (GMT 0)
Hi All,

  I have spent some time questioning if I should broach this subject or not. I am speaking of the way we see ourselves and how others see us. I have spent a lifetime with neurological diseases, family members and my own in limboland and as a diagnosed person. As some of you may know my mother died from ALS and her sister had PPMS from the get go. My brother and I both have SPMS. My point is that I am no stranger to the way the world perceives us and the way we feel about the limited control we have over our future well being. Iam not trying to be negative but just realistic. I think that we should explore how this disease affects our emotional well being...or our lack of emotional well being. That doesn't mean we all have to get touchie feelie but it seems like that maybe we need more then " I am sorry you are feeling like you are." I am not good at expresssing myself and I have always sucked at typing at any speed and am difficult to understand when I speak so the chat forums really won't work for me. 

  I promised myself when I was young that when I had children I would not burden them with my problems...I was their mother and they were children who grow up too fast when they have a chronical ill parent. My Dad died in a car crash when he was just 47. Mom was 53 when she died leaving my 2 youngest sisters as orphens at 13 and 16 years old. My other sister and I had to finish what my parents had so tenderly and lovingly started. To say I sucked at parenting 2 teenagers is an understatement. But my sister and I did our best. This is when I determined not to burden them with any more problems than the usual teenage angst. It is the same rule I had with my own 4 children.

  Therein lies the problem. I have no family except my sisters, (3 brothers...we are not close) and 4 children. My friends don't understand what I am going through and their well intentioned comments only serve to make me realize that only those who live lives such as our own understand, because even though our disease may be progressing differently and our ways of medically dealing with our disease and our spiritual approaches may be different, we do have an understanding of the seen and unseen aspects of our disease.

  Sometimes venting and, yes even whining, help us get some of it out our system. I do not mean a whine fest either. It is not so much that we want people to feel sorry for us...quite the contrary. There is a big difference between patronizing sympathy and real empathy. There is also a big difference between factual medical information, we can get most of that from books, doctors , the internet etc, and those of you that are gifted with having the ability to say the right thing or ask just the right questions.

 I would really like to have more discussions like this as I find it better for me to converse this way. Would anyone like to add to what I am trying to say. I know that I have ticked off some people here in the past but that was never my intention. I am truely sorry if I did.  Thanks for listening...this site is the best!!!! yeah     Dale

Posted 5/18/2007 1:25 AM (GMT 0)
Hi Dale, I think I get what you are trying to say - but may not be too clear, so please correct me if I'm wrong. I really hear you saying that you are welcoming discussion about how this disease (or lack of diagnosis) impacts us emotionally, mentally, spiritually and it being a "safe" and supportive place to discuss these things rather than burdening our children, families and friends.

If that is indeed what you are saying, I have to say that I am definitely in a place right now with this process that I gain alot of encouragement, wisdom, laughter and insight into this thing when I hear people speaking on a heart level. I also am not advocating a "whine" fest but definitely appreciate all of the different perspectives and feel supported and less alone when I hear what you guys are going through.

I feel like I'm going crazy sometimes and it's nice to dialogue about it.
Posted 5/18/2007 2:42 AM (GMT 0)
Hey Dale

WOW...what a great job u did!! I do want to post on this thread and will come back to do so, but first i really need to think. This is a great thread and deserves our total and detailed attention. Thanks so much for posting this. U'r absolutely right...the world sees this whole thing differently. Kudo's to u for starting this...i can't wait to see what others say.
Posted 5/18/2007 3:11 AM (GMT 0)
"That doesn't mean we all have to get touchie feelie but it seems like that maybe we need more then " I am sorry you are feeling like you are." "

Wow. That hit the nail right on the head for me. That is all I ever hear from everyone around me..."oh, I'm sorry". I know they mean well, they really do. And I don't know what I expect them to say, I guess. But "I'm sorry you feel like that" and then on to the next topic just doesn't cut it. This makes me feel like they don't care, and I know that is not it. But they just don't get it and I don't know how to make them understand without coming off like I want people to feel sorry for me. That is sooooo not it.

Maybe it's that I want people to take genuine interest in what's happening to me. Does that make sense? Not that all the spotlights need to be on me, but when I feel like talking about it, I want to talk about it. And sometimes I'd like others to want to talk about it too. Like an actual conversation...not just nodding and "oh, I'm sorry"'s thrown in every now and then. That, to me, feels like patronizing sympathy.

I know that people don't know and don't understand about MS except those who have experienced it, and I think that is understandable. But instead of a copout answer, try asking some questions and maybe you'll learn something.

Does this make any sense to anyone?

And Dale, I get what you are saying 100%. I relate with a lot of it. Thanks for the post.
Posted 5/18/2007 4:45 AM (GMT 0)
Wow!!!  Another amazing thread.  It just keeps getting better and better around here. 

Dale, this is so good.  Well done.  I don't know what to say except that I agree with you.  It is about getting people to ask the right questions and creating empathy.  And having converstions where people really connect so that you don't feel so alone with this disease.  This disease is making me crazy.  I am losing my mind which I guess is fine as long as you all come with me. 

Thanks for a fantastic thread.  Thanks to all who have already posted.  Keep this one going.  We need this.

Love and prayers,

 

Posted 5/18/2007 9:37 AM (GMT 0)
You people are the best. You have put into words what I, in my long winded way, couldn't say. Yes, we need time to say how we feel emotionally as this disease does affect our central nervous system and that has many ramifications beside the physical ones. That does not mean that I don't think the physical limitations of this disease are devastating...far from it...but we also need a support system that addresses all the aspects of our disease. All day long we deal with little or no understanding of this life we live. How can I expect others who don't have to deal with this, to understand when many days I don't understand it myself. I am not in denial but need more emotional support and you people are the best ones to understand. After 10 years of this and many more in limboland thinking I was losing my mind ( I did but that is a whole other thread..LOL!!!) I need someone to reach out to. I am a generally positive person having raised 4 great kids (not perfect but none the less great!!!) I find that now it is time to deal with Dale. Anyone who wishes to explore this road with me...welcome aboard. This is not meant as a whine feast, but in all honesty, this does have an emotional side that needs to be addressed because it is not going away anytime soon. Thanks all. Dale
Posted 5/18/2007 2:22 PM (GMT 0)
Hi Dale!
I can relate and it's funny that you posted this, this week. This week, I've been really depressed and frustrated with everything in my life and I'm mad that I don't feel well, I know I have a bad attitude and I'm trying to change it, but it's so hard. BUT I can't talk to any of the family really about it, it's really hard for any of them to understand. You've definately hit the nail on the head for me this week. Maybe when I get my thoughts around I'll finish up the post with what I want to say, but I fear I'll start bawling and I'm at work now.. :o(

Thanks for posting and making me feel that I'm not alone in thinking this way either! My big thing is I'm not dx'd so everyone is saying... "it's not MS, I have all those symptoms too and I'm ok..." Really?? If you REALLY have these types of symptoms - You're NOT OK... Sorry.. I hear this alot.. OR you've done too much research and you're just imagining that you have this stuff going on!! UGH.. I wanted to throw a guy that I work with out the window when he said that to me.. I am a professional, intelligent (losing that quickly though), well rounded woman who's body was working fine 2 years ago and a now it's not. Again.. I'm sorry for ranting again. Thank you for the post. I do feel a little better and I didn't CRY! ;o)
Posted 5/18/2007 2:23 PM (GMT 0)
Hey Dale

Well i'm back...having thought and thought of this..and still there is so much to say that i'm sure i won't get to. I'm a long winded person as well...so u guys bare with me.

Limboland is where i reside. Not even close to a dx...still just guessing. Maybe it's not ms at all..but whatever it is it's here and it seems to be staying. Lately i'm doing great tho..almost no probs, but then as soon as u say to u'rself 'must've been in my head' something, some symptom, just screams at u and u'r back to being sure. I lived thru quite a lot as a child, much of it very difficult, and i suppose for me that makes coping with this a bit easier. Limbo is no fun..it's always there as ms is...but no certainty that it IS one thing and not a million other possibilities. That can be good and bad...at least i still have hope it's not ms. However; even if it IS ms..whatever it is i'd love to just know and put that part to bed.

As for how i deal with it and others...well i don't. U all here know everything. My husband knows what HAS happened...but not what happens on a daily basis. I don't like the responses i get. "U'r not active enuf." "I've known people with ms before...u don't seem at all like them." "Yeah, i get that too..it's just part of growing older." I'm sorry...i didn't think growing older meant this! It irritates me beyond words...i don't know what say to them. I just bite my lip and keep quiet. What can i say?? I don't know what this is..for all i know they may be right. I don't deal with the 'this is a horrible disease' aspect...i dont' know if i have a disease. I suppose when or if that time comes i will. For now that's back burner.

I agree so totally with Niki. I'd love to just get to talk about it to someone here...some person in flesh. I'd love to know someone has enuf interest to ask thoughtful questions. Just talking means so much when ur scared or hurting. In the beginning many asked questions. I wasn't able to answer them. I prob still couldn't, but maybe i could...give it a shot. I told someone a few days ago that sick people need healthy friends, and it's true. We need to have that person who takes our minds off this...that person who, because they can't feel our symptoms, encourages us to do more and to push to get more out of life. At the same time tho, we need each other...fellow sufferers. We need that understanding and unfortunately that's the way others understand...experiencing it themselves. This is a great place because of that...but we need people...flesh and blood people in our lives...who want to know and want to understand. Not many of those running around. I'm quite glad to be here with u all...u have no idea the rope u've thrown me and how much i've needed that. I can only give u the limbo side of this. I haven't even really begun to think of how i'd feel with an ms dx, but i do know that even with the uncertainty of limbo...the fear of what it COULD be is less than the fear of what it IS. As for those around me...they fear what it may be. They are unsure and scared of what the future may hold. For that reason i accept and understand how they must feel. As a last note...i too was one of those people who couldn't understand or who didn't know what to say not so long ago. I can see how saying 'i'm sorry u'r feeling this way' would give them comfort ...they don't know what else to say. Do u prod and ask those probing questions?? And if u do...will u know what to do with the information u get?? Will u know what to say next?? No, prob not, so u stay quiet and just offer pat answers of surface comfort. Not because they don't care, but because they don't know.
Posted 5/18/2007 3:46 PM (GMT 0)

Wow Dale, this is such a timely post for me as well, and it is awesome how real everyone has been in their responses. Thank you. For me, my emotions about this disease are really hard to express to other people, or even admit to myself a lot. I am kind of chicken even to make this post, and I’m sure I will wince when hitting that “submit” button.

 

I tend to use humor when interacting with people about physical manifestations of what’s going on (haha, watch Sunny weave like a drunk and walk into the wall) because I know that these alone make people uncomfortable when they are present. However, I know that my emotions around this whole thing would really make people feel very much more uncomfortable and helpless. I also feel that showing or admitting that I am totally scared and freaked out by this whole thing would be seen as a sign of weakness, and when I have tried to open up I usually get those platitudes you all have talked about. I know I have people that love and care for me, and I think they honestly just don’t know what to say, and when they are uncomfortable, it makes me uncomfortable too.

 

Until recently, I was so focused on trying to save my job and just live my life that I did not deal with any of the emotions. I honestly didn’t want to know much about this disease, and I certainly didn’t want to interact with other people going through this. I kinda just tried to ignore everything as much as possible and hoped it would go away. Now I have had to resign from my job, and I have nothing but time to think…this is probably not so good.

 

When I had to resign, I had run myself down incredibly, and after sleeping for a few months I started to gradually feel better. Like Rhonda mentioned, I thought, hmmm, maybe all of this is over now? Or, maybe I do not have ms, or maybe the Copaxone is working? It was a really hopeful if brief time, and I thought I’d be able to resume my life to a certain degree. This last month or so, I have been pretty sick again, and am really starting to worry that I wont be able to go back to work. When I start feeling better I am on top of the world, and then I get sick again and crash and burn emotionally. Being on the third day of not leaving my apartment due to dizziness, I guess that I am in the burning phase. I constantly have to fight the feeling that my life is over….not in the sense that I am going to die anytime soon, but that I can no longer do the things I like to do, fulfill my dreams for the future, and or even do the things I really have to do, like work. I worry that I am not, and will not be able to contribute anything useful to anybody, not even myself, and that I will be dependant on my family. I do not mean this is a “poor me” way, these are just my honest thoughts….hard as they are to admit. This is all pretty new to me, and intellectually I know that I will find my way in this because I have to…now if I can just accept this emotionally…

 

Thank you all so much for being there! I appreciate you reading this long ramble. Exchanges like this make me realize that I am not alone in this struggle, and that it is okay to acknowledge all these feelings.

 

Sunny

Posted 5/18/2007 11:09 PM (GMT 0)
Thank you: Angielov, Rhonda, Littlechina, Gretchen, Darci, Denda and Sunny. I am glad that I hit a note with you all. That makes me feel not so all alone. And I hope that you feel a little less alone. I know people don't know what to say and they mean they mean well in most cases. But when I am accused of drinking on the job because I weave and slur it is very demoralizing. Especially when it is said by those who know I have MS. Maybe if I drank, I would straighten up and fly right. LOL...no maybe I would miss bouncing off the walls which are my usual targets and take a trip down a flight of stairs instead. And I don't use the words trip and flight lightly!!! We all have to laugh at ourselves sometimes to keep our sanity. But there are times we need to vent just to get it off our chest. ( My daughter once said to me that we must always care about ourselves as that is what good self esteem is about and not what other think you. Now that must be qualified because if you are running down the street in your underwear than you may just want to rethink what is socially acceptable. There is a limit not ever thinking about what people) Those who are truly good listeners learn very early on that they don't have to make it right just listen. Asking key questions so that they can begin to understand or learning about this thing called MS is all that is really necessary. Unempathetic people need not apply. I am sorry I don't need to convince you people, you already understand. You have no idea how much you have helped me this week as I was feeling down too. It is reassuring to know that my feelings are not unique to me and that many of us feel this way. In no way did I feel that any of you was feeling sorry for yourself but that you had a need to express how you feel inside. Any chronic illness wears one down after a while. For the most part we are the strongest people I have met as we keep on keeping on even when we want to throw in the towel. You in limboland don't stop searching for the answer but I hope you understnd even with todays' medical advances it may take a while as MS is a difficult one to get a handle on. Which sucks but we are here for all the limbolaners and MSers alike. Please keep on posting as we will help each other through this and hopefully we will have a few laughs along the way. Humour is what keeps me sane...hmmm semi sane? For those that are fighting to keep your jobs...I know how you feel. I am self employed in a dying trade...title searching... so if I can keep on working for 4.5 years then I can take early retirement at 60. Not having disability insurance it is not likely to happen before retirement age. I would not be able to survive on Canada Pension disability as it is very little. It is probably plain to you by this time with all the Canadian spellings that I am a Canuck!! I am as polite as most but much mouthier than most. I learned that from my children...not! Take care and keep in touch. Dale
Posted 5/19/2007 12:15 AM (GMT 0)
Friday p.m.

 

Very good evening, Dale:  I certainly agree with comments about this being a good thread.

 

Again, I realize what a blessed MS patient that I am.

 

I come from a large (8) family who are constantly calling me and asking if there is anything I need.

 

I have an amazing neuro that I think is the greatest.  Here in MI, the MS chapter is amazing in that it is al around helpful and hosting lecrtures all the time on a variety of subjects.

 

And mpst importantly to me, I have an amazing woman as my wife and  lifepartner and  best friend.

 

Boy, I am blessed.  John 

 

Does your local MS Society chapter have any help for you?

Posted 5/19/2007 3:45 AM (GMT 0)
Dale,

This is such a good thread. Thanks so much for being brave enough to start this. I can't tell you how much this thread meant to me. It is so reassuring to know that I am not alone on this.

You know what really got to me? It was the last two lines in the MS simulator thread. "MS patients, however, are stuck with a degenerative disease that even the best drugs can inhibit only temporarily. 'It's that slow build up over time that just eats away at you.'"

Jeez, that says it all for me. Scares the hell out of me really.

love and prayers.

Gretchen

Post Edited (Gretchen1) : 5/18/2007 9:55:11 PM (GMT-6)

Posted 5/20/2007 10:00 PM (GMT 0)
Thanks Dale for starting this thread! I am like several that have replied. These past two weeks have been rotten. I have pushed myself in my job and personal life really hard lately for one reason. And that is I have sick and tired of being tired! Depression is a constant thing that every morning I have to ask God for his strength and grace to make it through one more day. I am tired of having to take this medicine to stay awake one to slow my brain down so I can try to sleep at night.
I understand the "You look okay to me" "You don't look sick" .
I do have a great family but no one else really understands. It is great to read there is others that understand and they meant it when they say they understand.
I have just recently started dating this wonderful guy who is asking questions I can't answer. And I know he has said that he is not going to leave but in the back of my mind I can't seem to grasp the fact that he would stay. I have been told "don't push him away". And I am trying real hard to believe him when he says that he is staying.
Just one more person demanding something from me--my time, energy,etc. Things that right now I can't seem to give freely.
It makes me mad!! I have had to use the statement..Right now it looks like I will be there but wait to close to time for the firm answer.
Sorry to ramble on. Thanks for being my "MS" family.
Thanks
Dawn
Posted 5/21/2007 5:01 PM (GMT 0)
What has been going on the last few weeks that so many of us have been down and having it rough?? I too had a really rough go the last few weeks. Is Venus in the wrong house or something? Aliens beaming down experimental rays on us? Dementors?

Very weird. I feel pretty good today so I just hope that whatever was causing this has moved on. And I sincerely hope the rest of you are doing better as well. :)

Once again, I am loving this thread. While I am so sorry that so many of us have to experience these feelings, it is wonderfully comforting to know that I am not nuts and that others are feeling the same way. So often I feel like maybe I am making a bigger deal of things or that I am a whiner. I mean, I feel these things...the fatigue, the stress, the numbness, the massive frustration, etc....but nobody else does so there is no one to validate my feelings. So I start to think "well, maybe it is me". But I know that's not true, and I am really grateful for everyone sharing.

You guys are all amazing. Love and light to all of you!

~Niki
Posted 5/22/2007 1:28 AM (GMT 0)
 Hi all,

 Hope you all had a nice long weekend.

 Thanks all that responded to this thread. It may not be for everyone but we need to explore the emotional side and know that there are those that understand. We need once in a while to address the on going depression and the toll that this on going chronic and progressive illness is taking on us. I am really glad for those that have had the courage to try all the medicines to ward off the progression of this disease and the meds that help deal with the results of this disease. I wish that I had the courage to try and the closest that I have gotten to using any meds, (other than fluoxetine for depression) is lamotrigine for trigeminal pain. I know that it is used as a mood stabilizer for bi polar disorder and an anti-elleptic* but I am using it as a pain medication. It has been a long journey as my body didn't like it at first...hives etc (it seems I am allergic to everything...drugs are not my friend!!! LOL)but I have stayed the course and after changing the dosage I have finally been able to take it. It has done nothing to improve my moods ( I guess the jury is out  on how successful it is at treating regular depression) but it has done wonders for my trigeminal pain!! I am a coward when it comes to most medications so talking through my problems seems to help.  MotownJohn you asked if I had a good MS chapter in my area...the answer is probably yes, but as I am a very private and shy person for the most part (I know that seems hard to believe for some of you...but it is very true), meetings are not a good forum for me. Thank you for asking me though. I am so happy that you have such a close family...that doesn't surprise me as when I read your posts I could feel the empathy that came from you and it is probably a family trait (and as they say "Your Mom done good!!!"). When I lost my 2nd child when he 2 days old I went to a bereaved parents group and that is where I learned that I was not very good at sharing my pain in person. I guess that is why this forum is so good for me. It took me a long time before I had the courage to even begin to approach everyone here to voice my concerns for what any chronic illness does to anyone dealing with it day in and day out. It is not the individual days that wear me down( although they take their toll also) it is the overall affects and knowing that  there is no end in sight that gets to me. Some of you already expressed this and it is that aspect that I want to explore and deal with. We all know that there are no guarantees for anyone in the in the future (and that in a way is a good thing which is what I meant in my 1rst post in this thread when I said that nature has a way of helping us to cope with the normal unknown) , but when we are sure that it will probably not include any long term plans, when it takes away from our ability of future earning, when it destoys our marriages (I am envious of you and also extremely happy for those who have supportive spouses...you are indeed blessed) then this illness is about far more than just what it does to us physically. The physical aspects in themselves are hard to deal with (that is for sure!!) but when no one understands or dismisses me because I am not the same person I used to be or don't look sick to them then it wears on me after a while. This has to be extremely hard for you in limboland...its not that you wants a chronic illness, you just want to know why your body is letting you down and what to heck is going on. But, having said that, one has to walk a mile in my shoes ( I can't even walk a mile in my own shoes!!LOL) so I cannot expect people who don't have to deal with this to understand. That is why I feel safe venting here. Thanks to all for listening to my rant. Thanks for letting me feel safe and I hope all of you will express your outrage at this illness as it is the real enemy that we have to deal with. yeah

Posted 5/22/2007 8:19 AM (GMT 0)

rhondab said...

... As a last note...i too was one of those people who couldn't understand or who didn't know what to say not so long ago. I can see how saying 'i'm sorry u'r feeling this way' would give them comfort ...they don't know what else to say. Do u prod and ask those probing questions?? And if u do...will u know what to do with the information u get?? Will u know what to say next?? No, prob not, so u stay quiet and just offer pat answers of surface comfort. Not because they don't care, but because they don't know...

Rhonda you are so right...they do care.  I'm learning that I can't expect others to know what I need them to say or ask.  When I was home visiting my parents, the lower half of my body slowly went numb and I was very scared.  I really wanted to talk about it with them, but when I did they kind of looked down, sad and helpless and asked what can be done about it to which I said "nothing but time will heal it."  I guess what I wanted them to say was whatever happens we are here for you, and you can get through this.. or something like that.  Unfortunately I just made them uncomfortable, and I ended up disappointed.  While not everyone is a natural at being empathetic, it makes me even more greatful for those who are... like a coworker who remembered I was having a problem, and a couple weeks later remembered that and asked how it was now.  My fiance is a great listener, and cares so much... I'm so lucky.  However, I don't really like to tell him too much either because I can see it hurts his heart to hear it.

Great thread Dale - bravo to you for starting it.

Shar

Posted 5/22/2007 9:19 AM (GMT 0)
Ms or any debilitating or chronic disease can take such a toll on anyone.  We do need to vent when we are feeling frustrated, regardless of if we have great support or not.  I too, have had a long road with so many different diseases etc....and am going thru another right now. 

 

 I have such a hard time dealing with the frustration of having to ask for help becasue no one really "offers" anymore! 

 

 I find it very important to have friends who have the same diseaseand can relate.  I only have 2 locally (1diagnosed and 1 with some limbo-land thing) but I have others who can lend an ear or a shoulder. 

 

 My family tries but really.....could we have known what to do if our family members came down with an illness we knew nothing about and actually help and empathize correctly, I'm not sure what I would have done.

 

I try to help myself by knowing "it could be worst" and to pace myself and ignore those who chose to be ignorant.  It's hard but we all have to hang in there, wherever we are.

 

Take care all, thanks Dale! :-)

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