Dealing with the outside world?

[Rena705]

I am feeling rather down today people...I feel as though I am not part of this world because I have been alone for so long, day after day, only the tv, radio, internet to keep me a part of this world and yet not...really.

I went to a "friends" house last night to play cards and my hubby decided he was too tired to go so he drove me over and I went in myself.  Immediately, I felt bare and out of place...sort of like a piece of a puzzle that doesn't fit.

My friends all work and have children and a life...I don't.  All I have is my illness and because of it I can't get out and have a life...unless of course I am with my hubby so really I am living my life through him.

Does anyone else out there have these feelings?  I always had good jobs before whatever this is knocked my feet out from under me..I was in the health care field so I had to be on the ball...at this point I don't think I will ever be able to do it again.  

I have nothing to talk about with other people other than my health problems because that is all I have!  Isn't that sick?  I think my "friends" think I am belly aching and whining when I talk about anything related to my health because I get cut off immediately and the subject is changed very quickly.  It seems rather rude to me...but I have nothing else to talk about other than subject's from the past and when I bring up things from the past which have been talked about before, they look at me as though I am mentally ill as well. I have memory problems and maybe I am not getting the story right but I thought that real friends would deal with it and move on...

I think that after last night, I won't be bothering to go see those friends ...I don't feel as though they would miss my company anyway and I wonder why I was invited over...maybe just to appease their conciousness...don't bother.  The couple that lived at the house were also planning to go to a nearby town to a wonderful fish and chip shop for lunch today and they invited all the other guests to go but they just invited them over my head and I was ignored like I was deaf and blind and incapable of knowing what was going on.  At that point I went downstairs, called a cab and left out the walk out basement door and came home...haven't heard anything from anyone...guess I know where I stand right?

I feel like I made a mistake by choosing the wrong friends in the first place, I thought they were friends but damn it hurts when you realize that you are on your own now....

[Quixotic1]

Oh, Honey, what a nasty experience!  They were mean and thoughtless and, you're right, they are not your friends.  They are superficial people who want everything around them to be beautiful and for nothing to bring them down.  I don't think at all "you" chose the wrong friends.  We never know really what someone will be like until the friendship gets hard.  They showed their true colors.

But, that doesn't leave you any less isolated.  It just adds the hurt and disappointment on top of it.  As someone who was always solitary and moving around, from early childhood untilo almost now, I am not the person to give advice on making friends.  But, it strikes me that you have made friends here instantly.  Perhaps a small part of it is that we share many of your experiences.  Could you start by attending an MS support group?  You might meet some people who understand the isolation, thus the lack of other topics to discuss, and might meet some people to begin new friendships.  Than may sound lame, but it is a thought.

People are always suggesting that I volunteer somewhere.  I find that amusing.  If I had the energy to volunteer and work I would work!  But, another place I have found friends is a quilting group and a knitting group.  I can sit and do a little something and it's where I met my best friend who also has severe vertigo.

You will find better people.  It's like neurologists.  There really are good people out there. but they can be hard to find.

Quix

[Rena705]

First of all I have to agree that if I could do volunteer work don't people think that I would do something where I could get PAID?!  I have had a lot of people from the hospital suggest that and I just smile and say yeah, maybe someday when I am feeling better...it humors them it seems.

Thank you for getting back to me though Quix and I have to tell you that my hubby just called from work and I explained how my evening went and he was VERY disappointed in our "friends".  He feels that it wouldn't hurt to talk to them and explain how the whole evening made me feel...he said that, like you, they are not used to having something mess up their perfect world and they just don't know how to deal with it.  BUT I explained to him that the woman who's house I was at, had to give part of her liver to her grand daughter in order that her granddaughter live. Who was at the hospital every day to support and give the parents a break in ICU watching the baby while they went and did the bathroom, eating, sleeping, showering etc.  It's not like she doesn't know what being sick is all about and I was there throughout the whole transplant ordeal and supported them all the best that I could!  I do not think that any explaining needs to be done at all...she knew darn well how much she was hurting me and I would just as soon have nothing to do with her any longer.

I have been to MS society in the past but a LONG time ago in 1993 when I was first diagnosed and I was not too impressed back then with the whole group.  The communication I have had with them lately has not improved my whole impression of them but I am willing to try once more.  I have to wait until hubby has a day off...the story of my life, wait till hubby has a day off and maybe we can get to a meeting.

I am just feeling very hurt and devastated that at my age I would have someone that I thought was a true friend treat me in the way that they did...I honestly thought that sort of behaviour had disappeared when I left kindergarten.....

[cjacks]

Wow Rena ,

I read your post saying that you were going and I thought how wonderful , .. you were getting out , socializing , playing poker ..  I am so sorry it turned out the way it did.  Better to find out now and not when you really needed them .

Quix had a good suggestion about a support group. I've been thinking about seeing what the one near me is like . It won't hurt to try . I am also isolated , by myself and sometimes very low and in need of people who understand  .  

You sure aren't alone with the conversation skills either . After doing this for so long , the cog fog and whatever else goes with all of this , its difficult, to say the least, to communicate on the same level with  friends.( if I had any )  

I just wanted to say HI , and you are not alone . I wish I could help.  :))

(( HUGS ))     Jo

[SOONERMOM]

I want to encourage you also, because I know exactly what  you are going through.  I can't remember if you are diagnosed or not, but I feel like everyone (almost) around me just wants me to smile and act like nothing is wrong.  This has become impossible to do all the time.  I think we do make people uncomfortable and maybe some just don't know what to say sometimes.  Other people really don't want their "great lives" to be brought down by contemplating something like MS(like Quix said).  I will say that this experience has given me a clearer vision of which people care and which people care about themselves!  

I have also noticed that some things really don't upset me any more because things really come into perspective.  I know we have a situation going on at work and we could all lose our jobs.....but seriously I just don't have it in me to even worry about it!!  I feel like I am dealing better w/other people's insensitivity also.  I guess I see it as THEIR personality flaw, and I move on!

Quix is right, you will find better friends.  Don't be afraid to reach out, there are good people out there.  If I ever get diagnosed, I will be going to a MS support group!!  I think it is a great idea.  (I wish we all lived close and could have our own group)

Hang in there Rena, seriously chalk it up to ignorance and insensitivity and don't waste too much time on it!  I guess I have come to realize that people that are not in our situation really have NO CLUE--there is just no way that they could!

As you know, there is always on this forum that is ready and willing to listen and really CARE about what is going on w/you!

Stacey

[cjacks]

Hi,

I posted before I saw your second one .

Rena, you've have been such a big part of this forum since about the third time you post ed ,  You just jumped right in welcoming newbies ( like an old pro ). Giving soo much moral support . I have always been in awe of your ability to make such good friends so easily. You do have a knack at it , You do know this, right ?  You have always been available to anyone here in need . and now to hear that you had been so supportive of this woman and her behavior now is unbelievable .

Please don't let those idiots damped your good spirits and happiness . Stick with your friends here and try to do something on DH days off ..    Again so sorry this has happened to one of the nicest and kindest people we have on this forum.

Jo      

[t_vic]

Dear Mrs. Rena
Hello, I am 25 and probably not much help, but this is what I think you should try to do. But first let me say, I have two wonderful kids 4.5 year old girl and a 6 year old boy, but I’m a stay at home mom. Before I got into the relationship that I’m in right now, I still had my two kids but I worked when they were in school, then I went to get them from school, and went to the gym or park. We moved in with my b/f and his two room mates and on the weekend her two kids comes over, but my two kids goes to their dad’s on the weekends. Since this is not his house I feel subjected to this bed and four walls with a TV and a computer to take up my time till he comes home at 6 or 7p.m. My point is I rely on him to spend his every awakening moment when he’s not at work with me. Selfish? Yes, very! I am teaching myself to feel like I have nothing; I am teaching myself that I am weak! I have a car but I feel too depressed when he’s not here to do anything. We are totally happy and our arguments consists of what would you like to eat; no, no what would you like to eat? So to un-depress myself I leave from these four walls and force myself to walk a block or two, then I turn around and go back home and sit and wait. The more I leave the further I get. On other days I exercise in these four walls and say I need to get out and I drive to the park and just sit there watching the birds and I feed them bread. I stroll around to pass off time, because four walls can kill you, literally! I find out the more I do things the more I don’t feel like I need his time all the time.
Don’t make yourself feel subjected to your husband because if he passes on then who do you have? You need friends, even though I only have a few; no one deserves to be lonely! Your husband may be in your life but he’s not your life and its not fair to him that he’s has to be your every wakening moment. I know how you feel. Just because you cant get back on that ball don’t mean you have to suffer! You may have an illness, but you wouldn’t believe how powerful your mind is till you change it! Instead of saying I’m sick say I feel good today! Say it when you wake up, brush your teeth, comb you hair, and take a walk; smile!  Don’t use not, wont, cant; these things incapables you to do/feel better. You may be diagnosed being sick but that’s just mind over matter! You can make yourself better by loving “you” and STOP speaking of your illness! Your as only as ill as you speak of! If your mind forgets so will your body. What you don’t see/hear you won’t know or can’t hurt you. I bet you only got sicker when you found out you were sick. Depression makes illnesses worse then they are worth. And they are your real friends. My grandmother says stuff over and over and all it does is depresses me, but I love her so much. The question is are you their real friends? Because friends lesson but they don’t have to suffer! You choose to be in this place with yourself they don’t deserve having to hear this all the time. If you love them find some things to do and talk about that. Its not fair to them. They may have invited you because they really love you! And being on your own doesn't mean being alone. I'm sure that would love for you to go if you would talk about happiness; remember misery loves company! You wouldn't want to feel like that if you were happy? Please take care! And you can contact me back I mean you no harm! Feel pretty! Smile more! I hope you can take me into consideration and pull yourself through this!
                                                             tori

[Quixotic1]

Possibly a lame suggestion here, but what about starting a support group, maybe at the hospital, for people with chronic or neurological illnesses.  Perhaps the hospital shuttle could pick you up for it.  Or hold it at your home.

You are such a good person at rallying people.  Just noodling around for all of us who feel isolated.

I know, none of this lessens the disppointment and hurt of those "friends" making it clear you're not a part of the "In Crowd" anymore.  That will take time to put into some sort of perspective.  Meanwhile, I'm picturing them all in bodysuits with misplaced body parts!  We'll be glad to add them to the weinie roast on Friday!  Neuro's taste better, but anyone with that kind of self-centered thoughtlessness will do.

Quix

[SOONERMOM]

I didn't get a chance to read you response to Quix before I posted.  WOW--ok that is unbelievable that you have been diagnosed  since 93 and your friend does know about medical hardship and still she could be so insensitive!!  Especially when you were so supportive during her "trial".  I guess we know who is the better friend.

I  wonder if people look at MS differently than a disease that can be cured.  I have had people tell me.....you don't WANT to have MS!!  I feel like they act like it is contagious or something...they don't even want it discussed!  I don't know what your friends excuse is, I just know that I have experienced some of that treatment myself and am trying to make some sense out of it.  I am so sorry that happened to you, you definitely didn't deserve it!
Stacey

[dowma]

I'm so sorry you had to go through that with your so called "friends"  I feel I've lost friends since I'v ebeen ill also.  I know how hard it is not to work and feel like a part of society.  I'm so happy to hear you have such wonderful support from your husband.
I've been out of work since Sept. and I too have worked in the Medical profession.  I feel like I've had nothing in common anymore with my friends.  Its hard not to talk about whats going on in your life since it is so much apart of who you are at the present time.
Keep your chin up, youve had wonderful advice from the other members such as support groups etc.  
Just wanted to let you know your not alone  here and you have so many people here who need you as a friend.  
Take care,
Mary Beth

[humming4u]

i have no dought of the sweet,smart, encourager you are! I for one, already know I'd love to have you right next door!
I think theses so called friends have made a choice to not let your situation trouble them.BAD CHOICE, as one day they'll see for themselfs.lets hope they long for you then!
I've spent a fair amount of time waiting on my husbands return daily myself. but i am blessed with a few proven loyal friends, but even they have hurt me with words as "whats your excuse this time" how i wish i never had a reason to say I just can't do! I need them to know that.
when the weather improves i think our spirts will too.I'm choosing right now to have faith, and I will be praying that new ,true friend come into your life, start looking around girl,someone is looking for the same.
take care, forgive for yourself the stupidity of this lot you were with last night,i feel so sorry for them( not really), and can't help but wonder, how could they all be so blind at the same time to bad they can't really"walk(not perfectly, huh)? in our  shoes" for a time,would they care more then?
not to ruffle feathers,and you know I'm pretty new here, but i can't not, not say that things that Tori said were very wrong, but shes young enough to feel those ways and i'm sure she only ment well enough.encouragement,and finding the right and careful way, comes with time and errors, made plenty myself.
you, start thinking about how you'll be bragging one day about another monster fish!

[Heather3418]

Your friends screwed up BIG TIME....I hope it helps you to know how many friends you have on this forum that would come to your aid in a heartbeat.....

Isn't it great to read all these posts of encouragement and caring?  It's called true care and concern....

HUGS,
Heather

[Rena705]

cjacks (jo)  I really appreciate your response and taking the time to respond (twice)!  You and Quix gave me a good idea...maybe I should get together a support group and call it the Cog and Fog!  I appreciate all the kudos you sent my way honey but I am no more deserving than a lot of other on this forum...yourself included.  I think that what makes this so difficult is that I thought we were close friends and that is why I did invest so much into her family when the baby needed the liver transplant...at least the baby is doing fine, the grandmother needs an attitude adjustment that's for sure!

t_vic  I don't think that we have spoken before and I appreciate your trying to help but I think that our situations may be a little different.  It would be nice to just jump into my beautiful Mustang that I haven't driven for a year but my medical problems and my meds will not allow me to...you see I often have double vision and an ice pick type of pain that hits in my head and can at any time therefore I don't want to take a chance of possibly hurting someone else by losing control while driving.  I also am on medications that cause drowsiness and have been advised by the physician not to drive.  Being diagnosed as being sick unfortunately is not a matter of "mind over matter" and I hope that you never have to experience the situation that most of us on this forum are experiencing.  It is not in my mind and it does matter!  If my legs don't want to cooperate and the pain in my head is excrutiating and I have no sense of balance I simply cannot go for a walk because I don't want to end up on my face on the concrete down the block.
Tori, I imagine that you have the best of intentions but I did not go to the card game last night and make everyone miserable...as a matter of fact, I had very little to say at all because I don't have anything to talk about.  I went to have a good time but I was put in a corner and basically ignored, probably because it was the easy way out for them...who knows?
This is what you said "You choose to be in this place with yourself they don’t deserve having to hear this all the time. If you love them find some things to do and talk about that. Its not fair to them."  I don't feel that it is fair for you to make a comment like this when you don't know the whole situation.  As I explained, I don't get out, I don't see any
friends or anyone for that matter other than the dr., the neuro, the pharmacist and the checkout girl at the grocery store.  A comment like this is way out of line considering I haven't seen these people since Dec. 27th at a party and I certainly didn't sit at a party and bemoan all of my aches and pains.  I guess I should have taken the hint at the first of December when I asked one of the boys to take me to get a Christmas and Birthday gift for my hubby...and I asked again...and I asked again...and I asked again...never a response, just ignored...can't handle the chick with the cane I guess!

SOONERMOM...none of us deserve it and I am beginning to think that it all boils down to a lack of education about the disease...like you said, people saying "you don't want to have MS!!"  I think people by nature are afraid of what they don't know and I guess we all were pretty afraid of it when it was first thrown in our faces...now we know too much and we just get really PI**ED OFF!  It doesn't excuse people who are cruel, rude and downright ignorant about it.  This is part of why being proactive is so important to me...the more we know the more we grow and the happier and healthier we will be...and if not, we gave it a damn good try!  After all the comments I have heard from you, my friends today, I think that I have decided that WHAT THE HE**?  I HAVE GOTTEN THIS FAR WITH ONLY THE AID OF MY HUBBY AND DARN IT HE IS STILL STANDING BY ME HOLDING ME UP AND I GUESS THE BEAUTIFUL DIAMOND RING HE GAVE ME IS A SIGN THAT HE REALLY DOES LOVE ME AND IS GOING TO KEEP ME TILL DEATH DO US PART!!!!!  I LOVE HIM WITH ALL MY HEART AND SOUL AND WHAT THE HECK...NONE OF OUR FRIENDS LIKE FISHING ANYWAY!!!

p.s.  to tori...if I am going to live my life worrying about whether I am going to be alone because my husband "might" pass on I should be dead in a week!  I am sorry to be the one to say this but that is the silliest thing I have ever heard in my life!!!

Rena705

[Quixotic1]

I'm sure your comments were meant to be helpful, and it is your age and inexperience that lead you to say the things you did.  But, you do not understand that we are not speaking here of depression and "emotional" dependence on another.  We are speaking of people who are often partially paralyzed and partially blind and who CANNOT drive whether we are happy and thinking good thoughts or not.  Many of us must rely on others to drive us around.  I am one.  

Happy, positive thinking is good for all people, but it does not return strength to withered legs, hearing to those of us who have lost hearing, balance to those of us who no longer can maintain our balance, nor sight to those of us with damaged optic nerves.

You posted on a Multiple Sclerosis forum.  If you need information about MS so you can be helpful, then please ask questions so you can learn.  We will be glad to teach you what you need to know about it.  If you have MS, then we are all very happy that it is so mild that you haven't had to learn about about losing function and the need to depend on others.

Quix, MD

[monotreme]

Hi Rena,
    I am sorry you were the victim of arrogance and ignorance of these "friends".  I experienced many of those types of behaviors from people when I was in GRAMMAR SCHOOL!!!!   These people must be regressing!!

   When I worked as a nurse I saw how many of our chronically ill patients became isolated and that is happening to Craig and I too.  Even when family comes over, they want to go and do something. like take walks, go to our local gardens etc.  But Craig can't do that so he is faced with staying home and becoming more isolated.  (He won't do wheelchairs yet...he can walk just not for a long time),  

   Maybe you should flood your brain with pleasurable thoughts of your new trailer and the fun you and your husband will have in the summer.  Forget about those people.  They are not worth your time and energy.

  Elaine

[doni54]

Wow, what an interesting thread!

Rena, you are a special lady and all of us here love you.  You have many friends here and we are always open to conversation with you.  I'm sure 99% of us identify with the things you are going thru with your friends and other things that you deal with on a daily basis.

You take care of yourself and know all of us here love you and we are always here for you when you need us.

Tori, I know you had good intentions, but sweetheart, I wish!  I also agree with Quix.  Not a single one of us, the limbolanders or the dx, wouldn't love to believe that if we told ourselves all the good stuff that it would be true.  If only that were the answer, there wouldn't be so many suffering people in the world.

doni

[Barbie51]

I, too, have had similar experiences.  I'm into my 3rd year out of work and so am adjusting much better, but I don't have as many physical disabilities as you have to deal with.  I can still drive.  I can't imagine adding housebound to my list, even though I really don't go all that much.  You're so creative.  I think a support group called Cog and Fog is a great idea!  I know I'd be there.  You all just don't know what you've meant to me these last couple of weeks since I've "met" you.  I find myself telling everyone I do come across about you all.  They surely don't understand how I can be so excited over cyber friends, but it's incredible to talk to people that understand.  I'm very fortunate that I have 5 grown kids and stepkids and 4 grandchildren.  Only one lives farther than 30 miles, so I have a LOT of family to live vicariously through.  I

I hope you can start Cog and Fog.  I'm afraid I wouldn't know how to start, but maybe I can learn through you and others.  I loved Quix's thoughts on Quilting and Knitting friends.  I'm actually going to take a knitting class soon and found that I LOVE piecing quilts two years ago.  It makes me feel that I'm doing something creative and worthwhile that others can enjoy and will still be around when I'm not.  I've always worked with kids and people and taken care of others and finally found something I can do and "hold" in my hands.  I hope that makes sense, I don't think I'm explaining it right.  

I think I've gotten off track, imagine that, Me getting off track!  Anyway, I finally realized, after tormenting myself, that my so-called friends weren't being mean to me.  They were just being themselves.  It wasn't about me.  I was about their self-centered lives that I really didn't want to be a part of anyway.  I know I barely know you at all Rena, but I can already tell, you're WAY TOO GOOD for those people!

Sending love,
Barb

[cjacks]

Rena,

COG and FOG     I love it !    Do It !

Jo

[mokibear]

I am so sorry you had to go through that Rena. It is a sad day indeed when one finds out what their so called friends are all about. As others have said here though Rena, you are a great person and have made friends with us all on here and you will find someone to connect with out there. Have faith.

I love the Cog and Fog idea! I think you should go for it. Not only would it be great for you but for all the others you could help as well.

It is a sad world when people are defined by the illness they have. I get so frustrated and angry when I see the ignorance of others and their unwillingness to learn and understand what is happening with those close to them. Is it fear on their part? Perhaps. But if they could only see that how they feel without even having an illness, how it must be for the one that does, we would be in a better world. The problem is we have become a me society. We have lost the oneness of us all and made it singular.

Hang in there Rena. Fishing season will be upon you soon. But sincerely think about starting Cog and Fog.

Hugs
Moki

[sllowe]

You've always been here for all of us, pulling for us, despite what you had goint on. I feel alone too sometimes, even when there are over 5 people in the house.

I wish I had more to say of late, but wanted you to know that I was thinking of you and I'm sorry for how your feeling, but glad you posted this, something good always comes from it. . .

SL
p.s. we need that MEDHELP tour bus/RV durrnit!!!!!!!! Air conditioning, fridge, snacks, GPS, and internet - the works!!!!!!!!

[ELT]

There's an outside world? Really??????????????? lol lol

[ELT]

sorry, not belittling anyones feelings, was only joking, I do that a lot.  I enjoy time spent at home now, I have found other things to amuse me, and life is good, sorry, if i sounded nasty, I'm not, honest, lolo

Erica

[tanky]

I'm so sorry that happened to you.  I understand, at least a little bit.  When I was diagnosed, I told my friends and it was shocking the ones that were supportive and not.  I can still work so I am not isolated (yet) but my real experience in this comes from watching my mother.  She has autoimmune disorders (not MS) but has not been able to work in decades and also has memory issues.  She was unable to leave the home and relied completely on my stepfather and me.  She didn't have anything to talk about and suffered from self-esteem problems as a result.  I found her illness terrifying and I felt paralyzed by that fear.  I was NOT as supportive or compassionate as I should have been or could have been because it was easier to ignore it than to deal with the great pain in caused me (so selfish, I know, but it my defense mechanism).  I didn't feel comfortable talking about it either.  SO, when I was diagnosed with MS I knew what my friends were thinking and it made me more understanding of their discomfort with the situation.  I think your friends may be ignorant and they may not be doing the right things to support you.  For that, I am SOOO sorry and I wish they would step up to the plate.  But, please understand that their reaction to you may not be at all how they feel about you.  I love my mom more than anyone and that is the exact reason I couldn't deal with it.  They may be praying for you night and day but they are scared to have the conversation out loud.  If it gives you some added encouragement for Cog and Fog, my mother moved to a new town and has met new friends....she is going out of the house now with these friends and they are so supportive of her.  I am ecstatic that she has met these ladies.  I wish you all the best.  From the sounds of these posts, you are an amazing woman with tons and tons of friends on this forum.  

[grannyhotwheels]

Dearest Rena,  Honey, I cried when I read your post.  I really do know what you are going through.  When I first got sick and became disabled I found out who my real friends where.  

My husband and I had several very close friends.  We sorta ran around in groups.  We would all get together and do all kinds of things.  Picnics, camping, softball, swimming, basketball, and my favorite fishing.  When this stupid thing called MS struck me down in my prime we lost pretty much the whole gang.  Oh, they still do all that stuff but we are never invited anymore because they know that I can't do any of that stuff.

Like you, I did the support thing but I can't drive so depending on my husband to take me all the time was out of the question.  It's not that he wouldn't do it, it was more like he already works 2 jobs and I feel guilty asking him to take me places when he is home.

There is one couple that has never left being friends with us and they are a couple that we go to church with.  We get together and play cards, go out and eat, go to the movies, and sometimes just do a bible study together.  Brenda has turned out to be one of the best friends I could imagine.  

Besides them, there are many ladies in our church who will call or come by just to visit with me.  What I'm trying to make a point of is for me it turned out to be my church family that has done the most to help me.  They will sit and listen to me for as long as I want to talk or they will just sit with me when I don't want to talk.

I don't know if you and your husband go to church but it's a wonderful place to make friends.  The kind of friends that wont stab you in the back or in your case they stabbed you in the front.

I'm so sorry for all you are going through but regardless of what lies ahead for you we are always here for you.  You can talk anytime you want to.  We will always be here to listen to you and we care for you as a person.  Never forget that.

I'll be praying,
Carol

[Rena705]

Tanky...gee I feel silly now after reading what you have gone through in your lifetime!  You are a very brave girl not only for dealing with that situation but for admitting that you couldn't deal with it all the time and that, I think, is what makes you stronger!
You are to be admired for your strength Tanky and then to be hit with MS yourself...I just don't understand why you and your family would be hit like that...and I am not going to quote the "whatever doesn't kill us" stuff.  I have explained before that I don't really believe in a higher being having control over what sort of body we are dealt in life, we are in my opinion just going to have to deal with whatever it is right?  I am feeling tonight that I haven't really got time to wait around for those people to get it together and figure out that I am still the same person with the same attitude and the same huge amount of love in my heart that I am willing to share...I am feeling like I am going to have to move on and how I am going to do that I have no idea...I will let you know though what I decide that is for sure.  Thank you for your support though...it means a lot to me!

Carol...you made me cry too and you hit the nail on the head when you talked about different groups of friends getting together and all of a sudden we are not invited anymore...

I don't think I can sit down and take that though...I am not one to get walked on and I think I will be making some calls come the spring and letting some of these people know that regardless of my physical limitations, we will be at any functions just like we used to and if I can't get involved, I sure as heck can take pictures!!!

I am really tired tonight honey, this has taken a lot out of me today and my hubby and I talked about it all when he got home from work and he agrees with me...these people know what my limitations are and they know I have not had a frontal lobotomy (although it feels like it some days) I just talk funny sometimes and have a hard time walking any distances.  It seems that this is too much for those wimps to handle, he says it's their loss and it's time to move on!  Like he said, winter won't last forever and once the weather warms up he said he will take me to a support meeting at the MS society and if I don't like that maybe there is someone that can help me set up  my own support group at the hospital here for people with neurological problems...he loved the idea of the Cog and Fog and I say why not?  It's something to look forward to and maybe work towards!

I really appreciate your support Carol and I need to know how you are doing?  I will be on here tomorrow honey but I need to go lie down and rest my weary head!

THANKS TO ALL OF YOU FOR YOUR SUPPORT AND I AM FEELING LIKE I HAVE A LOT MORE HOPE NOW THAN I DID EARLIER TODAY!  I NEED TO FIND SOME PEOPLE THAT WILL ACCEPT ME FOR WHO AND WHAT I AM AND I AM SURE THEY ARE OUT THERE...I JUST HAVE TO GO LOOKIN'!!!

LOTS OF HUGS,

RENA

[t_vic]

      Dear Mrs. Rena,
No ma’am, we have never spoken before, and I am sorry to hear you about your problems, or even assume anything about your condition. I am not a bias person and I’ll love to hear your story, but by all means I still believe in mind over matter. You may not be able to drive or even walk far, but if you can teach yourself to do things on your own, then you want need to rely on anyone, even your “friends” for a simple conversation. Getting out and catching a fresh breeze and feeling the morning sun is the best medical help you can find and it’s cheap too. Many doctors say, “you’ll never walk again, he’ll never leave this bed, she’ll never speak again”, but little do they know the heavenly sun shines rays of light with no measurements! All you need to do is believe. Convince yourself your better in a little of no time you’ll see that you are. You have nothing else to do, and nothing to lose. Just give it a week and telling yourself you’re happy, you’re beautiful, you’re free, you pain free! I’m no doctor, but I believe in faith and it’s up to you to make you new! Enjoy what you have; birds, grass, air, the little things that we all take for granted!
Mrs. Rena, I’m not saying it’s in your mind at all but what I am saying is just because your diagnosed doesn’t mean your handicap. You can help you; you can make you better if you believed. Many doctors diagnoses people of many things and that doesn’t make the immovable to there illness. I do understand you have an illness, but don’t let your illness have you, that is all that I am saying.
Mrs. Rena, your “friends”, why would they ask you to come if they didn’t love you? Honestly I’m caring enough to right you because I don’t want you to feel alone, I don’t want you to hurt; I just want you to realize you may be mistaken that your “friends” who you say aren’t your friends just may be your friends. Sometimes people say and do things that they don’t realize hurts other people’s feelings and I believe before you jump the gun and say their not; that you should tell who ever hurt you that your feelings are hurt and tell them how. If they feel like they can’t take you and your situation into consideration then forget them because they are no friends at all, but maybe they don’t realize and if they love you they would be happy to show their sorrow of their shame!
Ma’am, if I may add; I mean you no harm, you stated you’re depressed and I just wanted to help. I could’ve easily over looked and said o-well, but you took my heart in pain and I just wanted to make you feel better. I don’t feel sorry for you, nor and one who is capable. I feel hurt for you because I read what you stated, and part of your statement was “I have nothing to talk about with other people other than my health problems because that is all I have!  Isn't that sick?  I think my "friends" think I am belly aching and whining when I talk about anything related to my health because I get cut off immediately and the subject is changed very quickly.  It seems rather rude to me...but I have nothing else to talk about other than subject's from the past”, Please understand I only replied to what you had stated and I only showed my concern. Forgive me if I upset you or put you in disarray with my comments!

[Heather3418]

I know that you mean well, when you say you are concerned for Rena's welfare.

Please let me assure you, Rena deals with some VERY difficult problems with MS that are NOT caused by any depression.  Rena is depressed over an INCIDENT.  Not overall depression.

Maybe I should not speak for Rena, but I believe that you are compounding the problem when you say in one breath that you care about her and her feelings, then again tell her that things are "mind over matter."

Rena suffers FROM REAL PHYSICAL problems...believe me, if she and other's with MS or any disorder could just "wish their symptoms away" they would.

Why don't we let this back and forth post rest?  Rena is going through enough, without feeling that symptoms are in her head.  She truly suffers.  

I know that you meant well....but your further comments are really hurtful to those of us and RENA that are suffering from this life altering disease....

Thanks,
Heather

[SOONERMOM]

OH BOY!!!!  I bet when you posted this you didn't think you were actually going to have to "deal with the outside world" while on this forum!  What an apt title for your post.

[Rena705]

This thread is a good example of how we all wish that the human race worked. I am amazed at just how much support you have given me and realistically, you don't even know me.  I had been putting trust into someone that I thought was a "friend" for about 5 years and we had been through thick and thin, good and bad, healthy and even unhealthy but when it was someone else that is unhealthy I think that it probably is inconvenient for them.  

My husband and I had a LONG talk last night about this whole situation and I hope you don't mind but I had him read some of the posts that you, my friends, made following my initial post.  The tears were flowing by the time he finished and he said that "if those "real" people can treat me like that and expect to get away with it, they had better be careful cause just around the corner there are some real cyber friends that will straighten them out if you just ask!"

We have come to the agreement that we are going to speak to them and let them know that we understand that they are not sure how to deal with my illness and there are a lot of times that we don't know either.  We want them to know that if they were unsure or if my illness was scaring them, as true friends they should have felt comfortable enough to ask questions about what was going on...they never did ask questions...we didn't push it on them.  We want them to realize that through the last year, we have never, not once asked for any help from them and we certainly were not waiting for them to offer...it was clear that it was not forthcoming anyway.  We want them to know that we genuinely thought that they were caring members of our lifetime group of friends but if they felt that they could not deal with my illness they are welcome to move on and we hope they find new, more understanding friends than they are.

My husband feels very strongly about this and it was pretty funny actually because he says, "I think we should buy gift certificates for a tattoo parlour for them so they can get tattoo's on their forehead that say - I will be your friend, but don't expect love!"  

I don't know why these people think I am such a pariah to be put away in a corner and brought out when their conscious needs clearing but this is not who I am going to be!  I was their for them when there was life threatening surgery looming for her and her granddaughter and I was in ICU helping with the baby because grandma was flat on her back after surgery...but I wasn't EXPECTING payback...I just expected them to be my friend as they had expected me to be back then when the going was tough!

My husband and I would like to thank each and every one of you for your support, kind words and for just being a friend to me when I needed one.  I will be fine and I am going to move on (albeit, probably rather slowly) and find a new niche that fits me better than the last.  I am going to try to get some of my fly tying material out today and just try to tie a fly!  I haven't done it for a long time and I am not sure if I remember how but what the heck.  I used to belong to a fly tying club here but they meet on the other side of the city and I just can't get there regularly.  They are a great bunch of guys though and I might see if I can drop in on a meeting here and their just to keep in touch...who knows?

I have a hard time with clubs and things, most of them are based on things having to do with women (NO OFFENSE INTENDED) and I get along with men soooo much better than women and always have (MEDHELP FORUM WOMEN EXCEPTED!!!!) just the way I was raised I guess.  I always did things with Dad (fooling in the workshop building things, walking through the woods learning about nature, fishing with Dad) and Mom and I while very close never got into the knitting, baking sort of stuff.  I do sew rather well and do embroidery and do crochet but you do not want me to try to bake a cookie (and I HATE baking!!)

So things are looking up and it is thank's in most part to your attitudes and abilities to make your friends feel better and I Love You all for it...THANK YOU!!!

Lots of Hugs,

Rena

[essdipity]

Rena, we do understand how you feel and as always will do our best to support you. That's what friends are for, at least this group of friends.

From reading what Tori is saying, I get the idea that her postion may be based on religious beliefs. There are those who believe that illness can really be dealt with through a mind over matter philosophy, and nothing we say can change that. Of course we can try 'attitude adjustments' and so on. We all do this, and it's good. But we know for sure that no amount of attitude will change some grim realities for us. Not everyone gets this, but I think they do mean well. Or are just very young. I'm so glad you can take it in stride.

Hugs back,
ess

[ELT]

   Hi there.

   I still have many people I am friendly with when I run into them, but, since becoming ill, my lifestyle has changed, dramatically.  I now have many different aquaintances.  People who are interested in doing the things I now do.  

   I joined a gym to try to regain strength, etc, and met up with a group of retired ladies who graciously invited me to join their group.  I exercise with them, have coffee after classes and we hike together every Tuesday.  When I am able, I go.  Sometimes it's as simple as a walk through town, usually groomed trails, for over an hour.  Then lunch, mmmmmmmmmm.

   I don't have the same interests and activities as I had before I was ill, my lifestyle is quite different, and has taken some adjusting, but, I like me now.  So do my friends.

   Nothing about my life is the same, but, it's impact, so far, has not got me down.  Thankfully, lol.  

   Hoping you are happy,

  Erica

[Heather3418]

You are right...FAITH can have a place in helping us in our lives.  (It is in mine) I WISH that I could pray this MS away....and I DO try to keep a positive attitude about it all.

Rena is going a GREAT job of handling things and I commend her for her bravery...

Heather

[Rena705]

I get what you are saying and I agree with you totally!  I just need to find my little niche in this world that I fit in and I also have to ensure that my husband is happy as well.  This, I know is going to be difficult and a little scary as I guess it is for anyone that has to make a lifestyle change for any reason.

Erica you have such a bright outlook and seem so happy in your posts and for that I am very envious and yet hopeful!

This has been a very emotional weekend for me and also I have learned a lot!  This is just one more lesson that I had not intended on...there will be change with this illness and it is something that I am just going to have to deal with!  The illness is not going away so I have some BIG decisions to make but I have time and through the bumps on this road to change I know that I have my cyberfriends to help me along and I appreciate it!

Lots of Hugs,

Rena

  









  
  









  
  






  
  

[LATW]

I AM REALLY SORRY YOU ARE GOING THROUGH THIS.  I WISH I HAD SOME IDEAS THAT WOULD HELP. WISH WE LIVED BESIDE EACH OTHER, WE COULD KEEP EACH OTHER COMPANY!  

I DO HAVE MY CHILDREN AND THEY ARE SUCH A BLESSING!  I HAVE ACTUALLY FELT ISOLATED BECAUSE I HAVE SO MANY CHILDREN!  SEVERAL OF THEM HAVE DOWN SYNDROME.  I THINK PEOPLE ARE AFRAID OF HANGING OUT WITH US. I THINK HEALTH ISSUES AND A LOT OF CHILDREN CAUSE PEOPLE TO RUN THE OTHER WAY.

NOW THAT I HAVE STARTED OPTIC NEURITIS I HAVE TO ADMIT I AM AFRAID OF BEING TOTALLY HOUSE BOUND AT SOME POINT MYSELF.  I HAVE ALREADY TOLD MY 11 YEAR OLD SON I AM GOING TO HIRE HIM TO BE MY DRIVER WHEN HE IS OLD ENOUGH. WE WILL GO OUT TO EAT AND GO TO THE MALL!  :)

I KNOW NO ONE CAN REALLY SOLVE THIS FOR YOU BUT HOPEFULLY SHARING HOW PAINFUL THIS EXPERENCE WAS WILL HELP SOME.  SHARING THINGS REALLY HELPS ME EVEN IF THERE IS NO REAL SOLUTION.  

LA

[ELT]

  I spent some time frustrated, and upset, but, life is what it is.  I try not to worry about things I can't change, or that I don't know about.

  My teenager is now her own problem, and not under my roof, lol, she lives at her boyfriends parents, I love her dearly, but my tiny 24ft by22ft wartime bungalow couldn't fit two women, lol.  
    
   I am not at work anymore, but, we make do, as I finished paying for my house a few years ago.  We're not well off, by any means, but, we are good.  

   My mother is an inspiration, at 82, she organizes a glee club, line dances, lives on 70 acres of forest, by herself, in a large timberframe home, which she heats with wood she carries.  She and her drinking buddy friend organize dinners for groups from their seniors group, all the recipes are from the LCBO cook book, everything contains alcohol, in other words.  She puts over 50,000 miles on her subaru all wheel drive each year.  An old lady she is NOT. lol

   I love my bf of the last almost ten years dearly, he is a smart ***, and a pain in the *** sometimes, but we suit one another to a tee.  And he's handy with a hammer, which my poor old house needs, lol.  He came into my life when I was a very healthy, attractive slim woman in her thirties.  He stuck with me through this whole ordeal, and is what keeps me well grounded.  As do my lady friends at the gym, and others.  

   Life isn't always easy, but, it is always what I make of it.  I like it, though I could stand to lose ten or so pounds.  We won't get specific on that count, lol.  There are a few things I'd change, but far more I would keep.

   Dale and I share a lot together, but, we have different interests from time to time.  We each enjoy each others company when we are together, we also cherish our times apart, lol.  

   Remember, things are always different tomorrow,

Erica

[young at heart]

I'M POSTING LATE AS USUAL.

I'M REALLY SORRY THAT YOU HAD TO ENDURE THE IGNORANCE OF SO-CALLED FRIENDS.

SWEETIE YOU ARE AN INSPIRING LADY AND THIS IS THESE PEOPLES LOSS AND OUR GAIN.

THERE'S MANY WONDERFUL PEOPLE OUT THERE AND I AM BLESSED TO HAVE THE COMMUNITY SUPPORT I HAVE AND THE SMALL GROUP OF SPECIAL FRIENDS I HAVE.

I DO SPEND MUCH OF MY TIME AT HOME ALSO WAITING ON SOMEONE TO GIVE ME A RIDE AND SO FORTH AND IT BITES.

CAN I BE THE FIRST TO JOIN YOU COG---FOG GROUP,I'D BE YOUR GUEST SPEAKER,BUT I'D FORGET WHAT I WAS GONNA SAY.(LOL)

YOU DON'T DESERVE THE WAY THESE PEOPLE TREATED YOU AND SHAME ON THEM FOR THERE BEHAVOR,JUST BECAUSE WE CAN'T RUN,JUMP,SKIP AND REMEMBER THINGS ALL THE TIME,WE STILL ARE HUMAN AND WITH FEELINGS.

RENA,I DO BELEIVE THAT PEOPLE WITH DISORDERS AND DISEASES MAKE KINDER HEARTED PEOPLE.

YOU WILL FIND THAT GROUP OF PEOPLE.

YOUR HUBBY SOUNDS LIKE A DREAM,JUST A THOUGHT,YOU COULD HAVE HUBBY DRESS UP IN A CHEUFFER(SP) UNIFORM AND DRIVE YA IN THAT SPORTY MUSTANG.

YOU KEEP YOURSELF FOCUSSED ON THAT FISHING TRIP YOU HAVE PLANNED.

PEOPLE CAN BE SUCH JERKS,IF I COULD GET MY LEG HIGH ENOUGH,I'D LIKE TO KICK THERE HINEYS FOR HURTING YOU.

YOUR LOVED HERE.

T

[gooddays]

HI, I CAN RELATE TO WHAT YOUR ARE GOING THROUGH AND I AM STILL WORKING.  I USED TO HAVE A SUPPORT GROUP WHICH THEY CALLED THEMSELVES MY STEP-DAUGHTERS.  IN THE BEGGINING THEY HELP A LOT, NOT ANY MORE.

WHEN I AM BACK AT WORK, THEY DO NOT EVEN ACKNOWLEDGE MY BEING IN AND THEY JUST GO BY AS IF I DID NOT EXIST.  IT HURST ME A LOT BECAUSE THE ONLY TIME THEY KNOW I AM AT THE OFFICE IS WHEN THEY NEED MY HELP AND AFTER THAT I AM LEFT OUT.

I AM SORRYTHAT YOU ARE GOING THROUGH THE SAME THING I AM.  IF THEY ONLY KNEW HOW MUCH THEIR ATTITUDES HURT US, MAY BE THEY WOULD REALIZE HOW GOOD OF A FRIEND WE HAVE BEEN. FOR ME, IT IS TIME TO MOVE ON, THE LORD WILL GUIDE US.

I HAVE BEEN THINKING ABOUT YOUR POST ON HOW MUCH ENERGY YOU HAD AFTER YOUR STEROIDS TREATMENT. I AM SORRY IF THIS HURTS YOU, BUT I NEED TO ASK YOU.  DID YOU COME TO MY HOUSE IN PUERTO RICO AND LEFT PART OF YOUR ENERGY HERE?  YOU SEE ON SUNDAY I WAS NOT FEELING WELL, BUT AFTER RESTING FOR TWO HOURS, I GOT UP AS MAD CLEANING LADY.  I DO NOT HAVE A HUSBAND WHO CAN DO MY CLEANING.  SO I CLEANED THE HOUSE, INCLUDING MY FRIDGE AND KITCHEN FLOOR.  AFTER THAT I REARRANGED MY FURNITURE AND MY DECORATIONS TO POINT TO CHANGE SOME OF IT.  I THINK YOU CAME OVER, AND I GOT HOOKED ON YOUR CLEANING VENTURE.  MY HOUSE IS SPOTLESS, BUT I AM ON STEROIDS TREATMENT NOW.  NOT TO BLAME YOU.  I JUST WANTED TO HUMOR YOU A LITTLE.

WE ARE ALWAYS HERE FOR YOU, I KNOW IS NOT THE SAME, BUT UNTIL YOU FIND REAL CLOSE FRIEND THAT YOU CAN SHARE WITH, WE ARE ALL A MESSAGE AWAY.

WHEN YOU HAVE YOUR CONVERSATION WITH YOUR SO CALLED "FRIENDS" LET THEM KNOW THAT YOU HAVE MS, BUT MS DOES NOT HAVE YOU.  LET ME KNOW THEIR RECATION.

TAKE GOOD CARE OF YOURSELF.

LOTS OF LOVE AND HUGS,

ZULMA

[t_vic]

I’m glad to see, "what I assume", your feeling better. You seem really up and motivated to tell your "friends" how you feel, and you’re going to try to tie a fly? lol I guess, all's well ends well... I hope this all works out for you and I wish you well!

It seems that I was wrong in my belief of you teaching yourself to love and help you, so I’m rather sorry for my incompetence of this matter. I maybe young but I deal/dealt with equal amount of imbalanced measures, and I'm not a hateful person, I just try to make everyone happy. Sometimes I don’t realize that my help is crucial, but what people fails to realize, it’s not in vain. I’m sorry to have offended you and/or your net work friends. Just because I don’t have what ya'll have doesn’t incapable me to understand that there are people out there that’s gets over looked and it hurts them to feel this way; I just thought since it’s us "outsiders" who is doing the hurting that I could show you/anyone else in this conversation that an "outsider" that is listening and wants to help. Please forgive me if I had hurt you or misinterpret the situation. I just wanted you to smile because life is beautiful; if you see it for it, and not what people makes of it. I don’t want to be misconstrued the situation or discombobulate anyone; I’m not a bias person! Much love goes out to you and I hope you have a wonderful time in what I think you may be going fishing? I’m not to sure of "try to tie a fly" means lol... and further more I hope when you talk to your "friends" that they see their wrongs and drop to their knees for forgiveness, and you will take them back like the loving friend you've been for all these years. I think from what I have been reading that my conversation here is done. I've seemed to have gotten to some people who just rather I would back off, so once again I’m sorry for disturbing you and I wish you well, good luck.

                                                                            Tori:)
Ps. remember to smile!

[t_vic]

I just wanted to thank you for taking the time out to write me. And yes sir I did and do not know what MS is. I just thought I could help her from what I assumed was her depression. No sir, I wasn’t clear of how server her condition was but at the same time I knew she has one from what she had stated! Honestly, I just wanted her to feel better about her friends because I know sometimes hi hurt the ones I love and they get mad at me and never let me know till tension builds up and we are at each others throats. When we talk about our differences it makes us better and stronger! I just wanted her to see for sure if they are or aren’t before letting them go! And I would love to know more about MS so I can understand; by far am I bias and I love learning. That’s because “young” people has a lot to learn and I’m willing!
                                                                                   Thanks,
                                                                                         Tori

[t_vic]

I never stated that her symptoms were in her head, I do realize actual physical things does happen but what no one fails to realize that a lot of things like mind games places us from reality! She may indeed be in a crucial state but what is so wrong with saying think good thoughts and you’ll be better. I don’t think anyone who is reading what I am trying to say is that she was depressed over her friends and I just wanted to make her feel better about them. Only one person on her helped me out by leaving an understanding comment to me back, but you know what, your right; I’m sorry! And I will back off. I guess the way no one understands ya'll problems is just about the way ya'll don’t understand that I know she's sick and that I know that this is not a mind thing and with hope and believe you can make it past anything I maybe young but by far am I dumb! I don’t have to argue with anyone! I just thought I would try to brighten up her day and obviously I did a poor job at it. I said I wish her no harm, but you can’t force your help upon people who cant/ wont hear you out! This conversation is over. For you, Mrs. Rena, and anyone else I will not reply, I didn’t mean to hurt anyone, but how do you want someone from the “outside” looking in understand what any of you are going through if you shut the window! I am very open minded to anyone/thing but if "you" (in general) want to be closed minded then ok, no need to argue! Have a good day!

[Heather3418]

I am absolutely SURE that you meant NO HARM to Rena in your posts.  I am SURE of it.

Please understand that I believe what was misinterpreted, was the manner in which you talked about "mind over matter."  It sounded like all of us with MS could just tell our bodies to forget what our bodies are telling us and this would make our phsyical problems go away.  

I totally agree with you that a positive attitude is of utmost importance in fighting any problem in your life.  I hope that you will understand also, that when a person has a chronic illness that plagues their bodies 24 hours a day, 7 days a week, that putting on a happy face is not always possible.  We really do TRY.  Trust me.

Again I think you really did mean well by your comments.  It's just the way some of your thoughts came "out on paper," that made it seem like we could all just wish our problems away.

Please do not leave thinking that you are a bad person for expressing your feelings.  It was your misunderstanding of what people with disabilities actually face everyday.  I DO realize that you meant to cheer Rena up.  For that I cannot fault you.

Anything you would like to truly learn about living with MS, we would be glad to share with you.

Do have a good day.  I really do mean that.

Heather

[cjacks]

Tori,

You are young but have a good heart and tons of love .  I've wanted to write to you before but have never gotten to it . I'm sorry for that . What a mess this is !!!!  These people here have big hearts too.  Everyone was trying to look out for Rena. No one here would intentionally hurt anyone .  

You seam like a sweetheart.  Please don't be upset by the communication from this forum. We are all trying to do the best we can under some very difficult circumstances.

I feel/have felt badly for you , in your four walls.  Are you able to work or go back to school? Taking walks and waiting for BF just isn't enough for a bright energetic person such as yourself .  

You also sound spiritual ...  do you have a church or affiliation in your city..  

You are a very compassionate individual , with a lot to offer the world , get out there !!!
I will write more but wanted you to see this before you amscrayed( sp)

Sincerely     (( HUGS ))       Jo

[t_vic]

Mrs/Ms/Miss Heather,
Forgive me for lashing out, it's just I don’t want anyone to get the wrong impression of me and I just really wanted to make her smile and know that life does go on with/o friends family or anyone. I just think as far as feeling “emotional” if you depend on anyone to keep them up that you would be let down. If she can find happiness in her; as far as emotions goes then she/anyone won’t hurt when others lets them down. Just because I do not have this illness doesn’t mean I’m dumb to understand; yes I am ignorant to the fact to this illness, and no I don’t know about it, but I’m nowhere at all at shame to identify this matter. Yes I am young, but not only people with MS have to rely on others. I suffer with my family everyday, so much that I don’t deal with any of them  but my kids and only one of my sister's. Life is hard and just because I’m young don’t mean I haven went or seen anything, if you (anyone) believes that, then you (in general) are just as foolish as you make me to be. I’m from the south (New Orleans) where everyday is lovely. But not so long ago was a day made happy. My mom and dad ran out on us; one child 2, I was 1, and a 3month old baby for 10 years then when they came back and they decided to beat us for I guess pleasure mentally, physically. My grandmother raised us the best way she could after raising her 5 kids and us for 13 year then we was put in foster care. She has no job and she relied on help from family, the state, Salvation Army, anyone, anything. Poor! my sisters and i stole snacks out of stores to eat. Do you think my family wanted to help us considering that we’re mixed (black and white), and it was only our white side that stepped  it to do what little they did to help. Sending us to black schools; being picked on bullied because of our color! But you know that’s not the half of it! I love and realize life. Just because I’m young don’t mean I haven’t gone through anything. I’ve seen hurt I’ve been pain and that’s why I can speak and try to understand and want to help anyone that I can, because I know how it feels not to be helped or being helped out of petty! I know how it is to want to do but can’t do for you! I don’t have to be ill of MS to know how this feels; depression took care of that. But i just had to realize I'm better if I believe. I'm not pretending I know or understand, just a simple thought thats all!
And thanks for trying to understand. I didn’t think by trying to help someone that I’d have to go through this. Honestly. I’m trying to stay happy, I’m trying to have a baby by a (old) lol man who is 38 with sperm motility due to injuries, and that’s why I joined this site. I seen Mrs. Rena blog and I posted that’s all.

[Jazzyfizzle]

Dearest Rena, I am sorry to read you had to deal with an evening like this, and one you were so looking forward to. :(    
  I find I am still surprised each time I hear how people react in these situations to 'us'. It is never what I would have thought. Maybe I always thought too highly of the overall human race, unfortunately. I dont' know.

I too was amazed to see which friends (and family!) turned out to be the supportive ones. I was way off base on some of my guesses. My own sister has a comment she likes to use that stabs right to the heart everytime. I can't even type it, it is that unbelieveable. :(
Each time she says it, it rips out a little more of my heart and I want to run away crying like a heart broke teenager.

I wish I had an answer or idea for this situation. The best ways I have found to deal with it, are some of the ideas suggested - new activities that you can participate, even if it is sitting in a chair in the midst of things. Working on things at home, anything that you can possibly work on, such your fly tying, sounds like a great idea. Maybe you could work on expanding this idea just a little inch at a time.

Unfortunately I feel I have to limit how much I talk about medical/ my health issues with family and friends. It hurts to do this. I always think- if they really, truly cared, they would always listen. Then I think, how realistic is this thinking. Its a vicious circle. :(  

I think you are wonderful, and would also love to have you nearby so we could hang out!
-----------------------------------------

T VIC -  I think Heather's post was perfect in response. I can't tell you how many times this very type of thing you are saying had the completely opposite effect on me when I heard it & sorry, actually ticked me off. It almost feels like 'belittling' or mininmalizing what the person has to deal with everyday. I truly hope you can understand that.

Why have you chosen to hang out at an MS forum, just curious? Do you have a friend or family member with it?

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

I wise lady with RA, I know once said - (this is in response to a bunch of people telling another ill person we know how 'positive' she always is and how great it is) - -

"Being positive is very important, but being human and having sadness and depression and a pityparty goes with being human--so it is ok to have both once in awhile".


And this woman has always seemed so uplifting to me. I found real comfort in knowing that she has difficult times too.

All the best to you

Jazzy (Sher)

[Jazzyfizzle]

I was typing (slowly of course! lol)  while that post ahead of my posted.

Jazzy

[Rena705]

Hey Hon...have you ever given  your sister any indication as to how that "comment" makes you feel or is she the type that would get a "kick" out of making you miserable?

I would have some choice words for any family member that had the ba**s to speak to me like that and I don't think I would be seeing much of that person!

It is so easy to get angry and lower one's self to "their" standards though!  That then makes me even more angry!  I think I need to take a break from the forum for a few hours and think about this honey!  I will get back to you on it...but what an advertising bud that would be don't you think...I know two people with disabilities that are being treated like **** by their sisters so whatever you do DON'T BECOME DISABLED IF YOU HAVE A SISTER CAUSE THEY CAN BE VERY MEAN!!!  ha ha ha  I know there are a lot of loving helpful sisters out there as well but it only takes a few bad ones to spoil the whole bunch!

Lots of Hugs,

Rena

[t_vic]

  Dear Mrs. Jo,
Yes ma’am I able to able to work or go to school, but somehow between now and then I have become lazy (out of NO illness) and took life for granted and I just rather stay home instead. I was in the shower last night and I was thinking to myself; I stopped working with out my boyfriends consent. I got use to him taking care of me and my kids that I guess in my mind I felt like I didn’t/don’t have to work. How selfish of me! I know right. I felt bad so when I got out the shower I told him I was so sorry; he asked me why and I told him. He asked me did I like staying home because he loves taking care of us. I told him yes but its not fair for him to do this for us. I love doing things I was/ am a tomboy but I’ve been so caught up in trying to get pregnant that I’m too scared to work the job I work. For two months I hoped to be pregnant so I won’t work there if I am; too much smoke. I would find another job but it doesn’t pay as much. You have to realize after the storm (Katrina) rent is like $900 when it use to be like $350 just for a one bedroom, and minimum wage is like 7.75- 8 I believe! I work in a bar even though he makes enough in my eyes to feed the whole world I don’t want to work for that little money. I rather stay home and work on having his first child; my 3rd and take care of my kids!
And yes ma’am I believe in God and by faith is your design. But I do not attend church. I’m a little baffled by their design. I don’t see eye to eye just yet and I’m bewildered by their beliefs. See I just so happen to love women, but I fell in love with a guy. I don’t believe that gays are cursed for the simple fact that word (homosexual) is a word found in the 18th centuries. In Jesus’ days it was ok to be that way. Kings, men, women, etc; even kids had intercourse with the same sex. In the 1700’s this was away to settle their beliefs. And people misconstrue the "Word" when he (not sure if it was Moses or not) seen the city that the city was damned because they were having intercourse with everyone. That was a normal thing. They were damned because of selfishness. They were rich and had food and partied and got drunk and fornication. Instead of them sharing their wealth to the poor and drinking to get drunk and massive sexual acts was the reason why they were damned. In those days you wont find a word that translates gay, homosexual, or even bisexual because the word never meant anything in those days! In those days they even believed the world to be flat. Funny how their beliefs was not all that correct. So I mired church till they or I come to a piece of mind. I still pray and my kids pray, but I don’t want to go just yet.
Ps I won’t aimscared lol I just don’t feel the need to argue. For the first time in my life am I completely happy. I got a man who our arguments are, what would you like for dinner? I grew up in a harsh place in N.O where I was taught no to be so nice. I really don’t understand how I am after living the way I did, but maybe it was in my design to go through what I did so I can be who I am. But I am just happy with my life and the way things are going that I want other people to see going though things is in our design for different reasons and that you shouldn’t let anyone take your joy from you. I’ll never go back to the old hateful me; who cared not for anyone’s feelings. It took me to hurt and have two kids to realize life is more than pain. That I don’t have to live everyday in pain if I chose not to.

[Heather3418]

Would you back me up here and consider this a closed thread?  Please join me in not posting any further posts to this thread.  Thank you group.

[t_vic]

No ma'amNo ma’am I know no one of this matter. I don’t think but one or two if that many people understand that all I was doing has nothing to do with her illness. When I first posted I clearly thought she could possibly drive. I thought she was just depressed. Only a few let me know/understand that this is more then just BEING ABLE to walk! I spoke nothing of her illness till I seen her response and only two people helped me understand that this is a bit more serious then that.

To all:    How can any of you want anyone “the real world” to understand if all you’re ready to do is justify? I’m not sorry for trying to help her feel “EMOTIONALLY” better! But I am sorry that the ones who took me as a threat can’t see all I wanted to do was help her “EMOTIONALLY” and not “PHYSICALLY” I’ve heard an inadequate amount of this illness and honestly the ones who makes me seem like I’m a bad person makes me feel like I care not to know! Because in “reality” people aren’t this rude! This is the first website that I’ve ever been on and I tried to be completely nice and so many people want to argue! What are “you” teaching “us”? That we can’t have a civilized conversation where sorrow is given and understood as just that! There is no difference between you and me. We are all human, just like you have feelings, well guess what so do I! If this is what “you” call MS then I’d just rather stay in the “real world” and be inadequate to MS. Because in the “real world” people loves and understands when help is trying to give.

    And honestly ma’am I didn’t choose to hang out on MS forum. I just saw a simple cry out for help. Mrs. Rena was discouraged by her “friends” and she didn’t know what to do, so I thought I could brighten up her day “thinking she was just depressed (under the weather)” and telling her to love herself and not to need anyone else “not knowing she had an illness, MS”. And from there I got bs from a few people that I felt I had to explain myself to. When in fact if Mrs. Rena felt this way she could’ve told me and I would have told her myself; instead of having to go through so many people fight on her behalf! I just wish that “SOMEONE” could read and understand what I’m saying! But how could anyone when all they rather do is argue?

To everyone:   I just want to thank those of you who wrote me telling me the facts of MS and helping me understand this illness. And I just want to thank those of you who wrote me wanting to argue in Mrs. Rena defense, I will respond to you who speaks of me! Other than that I’d rather stay off of this forum, so with that said if you don’t want me on here good then please don’t speak of me. I can see why things happens but I don’t understand why “ya’ll” choose to let it happen! I’m better off helping someone who cares to listen not fight!
I’m working on a baby and stress is not in my design. Thank you all, take care!

[rudyhorse]

There are some great people on this forum who have for years dealt with MS.  I myself have not gotten a dx yet. Plus I am very new, so excuse me if I am out of place. But guess what I can't drive myself many times, and the isolation is terrible.  Then when you are unable to work it is even worse, you are out of the mix so to speak.  I guess that is when you find true friends.  I have one,--this forum, and I take what helps and leave the stupid things here.  It is NOT depression that causes us to feel badly, otherwise we would not try to see "friends" we would be in bed or staying home.  Sorry to be so blunt but it hurts me to see when someone is honestly opening up their soul and hurtful, although well meaning advise is given.  Sometimes it is best just to say, I am here, I'm listening.  If you have never lived with this isolation you could never understand it.  To those who do live with it and are looking at who are their true friends, I can only say my experience is that I went through a lot of grieving, but found a few wonderful friends.  And some awesome rabbits, seriously rabbits that listen to me whenever I need them.  And I help them too.  Some stupid comment once made to me was to get rid of my rabbits, move to the city and take a bus and volunteer.  I can't climb stairs, who is going to get me on the bus?  I can't work, how will I volunteer?  Plus I fall often. Guess what, I don't have much to do with that person anymore, and it's my own sister. If they don't "get" it or me why invest my little energy?
Didn't mean to go on so long-----------Hugs to all who experience this, and somehow we are out here together, not alone, even though that is hard to feel sometimes.