Is it possible to get over the humiliation of this

[Boudreaux]

Agreed. And as you imply, vigilance is important. There is a lot of prejudice out there when people see canes or crutches. Case in point: the ideas in this thread that needing a cane for any reason curses you. A thought!

An interesting thought too! Vent about how terrible you view a possible future to the very people who are living it. I understand a little fustration, anxiety, fear even hopelessness but at some point keep telling people that you consider their life to be basically useless....come on. Wheres the love?

[Daisycat]

And where is the understanding that we all want different things?

As I’ve said before I had a friend kill her self when she found out she had cancer and one that suffered for years before it killed her. (Yes she did have some good months)

people should understand that some people had a very specific plan and having 100% of that stolen makes a life not worth it for me.


I have respect for people who can carry on in my nightmare versions of this but that’s not a life for me.

[Boudreaux]

And where is the understanding that we all want different things?

As I’ve said before I had a friend kill her self when she found out she had cancer and one that suffered for years before it killed her. (Yes she did have some good months)

people should understand that some people had a very specific plan and having 100% of that stolen makes a life not worth it for me.


I have respect for people who can carry on in my nightmare versions of this but that’s not a life for me.

We all want different things, I don't believe there's any misunderstanding there.

Sorry to hear about your friends but what does that have to do with anything?

Life is what happens while you 're busy making plans. I don't know a single soul who has ever had everything work out according to their plans, it just doesn't happen.

but it is.....as you are here, with us, living it, right now.

[marti]

An interesting thought too! Vent about how terrible you view a possible future to the very people who are living it. I understand a little fustration, anxiety, fear even hopelessness but at some point keep telling people that you consider their life to be basically useless....come on. Wheres the love?

Boudreaux, all the time Sam was sick he wanted his gun. Kept tell us he wanted it over. And really, I understood that. But when it came down to it, he wanted to get better. When major things came up he asked me to take him to the E/R or the doctor and he asked for his meds. So deep down he believed he could get well and was willing to try. Daisy has found more than enough understanding here. I still believe she needs professional help to get over this need for attention. She perpetuates this thread as long as she can, even though she has found some sympathetic friends who agree with her. Enough is enough. We all got the point. She's going to do what she's going to do.

It just irritates me that she has this mild course of disease (according to her) and still calls her life "hell" and misery. I think most of the "hell" is in her mind. Hence, the belief that she needs some pro help. She's got a lot to offer to this world, but has gone from zero to 60 in a minute, thinking it's over for her. This thread should end now. She got what she wanted from us. Some agree with her, some don't. That's the way these things go. It's easy to talk with strangers who you will never meet. Venting is the word.

[sarabeach123]

And where is the understanding that we all want different things?

I have not seen one person comment negatively about your plan to end your life in Switzerland if the time came when you could not function.

Unless this comment refers to us not understanding your desire to be free of any symptoms of MS? In which case, of course every single person here agrees with you. Not one person on this board "wants different things" when it comes to their health. We all want to be healthy.

[Daisycat]

Boudreaux – Yes sadly my life has decided to curse me with this hell so until the time comes when I can’t spend 90% of my day thinking I am normal I will go to Switzerland. It is disgusting that people in American have to go to another country for this type of thing.

Marti – Of course people want to get better but at a certain point some people just can’t or won’t live a certain way anymore. And no I have no need for attention. I need to vent about the fact that I am more than likely not going to get to grow old with my boyfriend and retire on my dog rescue. I will have to die alone in Switzerland. I am angry and depressed, but need attention – no.


If you do not agree with me start a thread about how wonderful life can still be…. I promise I won’t keep coming back to it to disagree with you.


Today this curse is mild, but who knows what will happen tomorrow. One year ago I was normal and had a future and all of that changed in a second when I got my double vision and found out a few days later what it was. I really thought it was just lack of sleep and stress. I am not wasting my time with professional help because they aren’t the type to support my end game plan. I do not need to have someone waste their time and my money trying to convince me a life of no independence is one I should live.


If you do not agree with my point of view again stay of the thread. I have no one in my life to talk to since this is humiliating and I will not tell anyone so venting here is the only thing that keeps me from completely losing it.

[Myoak]

Healing, in all forms, whether physical or psychological takes time. And certainly true when wounds are recent. It is expected that healing takes time and the time it takes will vary according to the injury and the individual involved. Although healing may never be completely and totally restored, it may, if provided the opportunity, be restored to the point where a more normal life is not only possible but likely. It takes time and opportunity for healing to occur and each individual may take an individual path doing so.

One thing is for sure, we are all learning from the honest expressions in this thread. And I believe, healing is occurring from them; most of them, anyway.

I am going to agree with a couple things recently stated in this thread... Marti saying the thread should end now. I agree Marti; for you it should end now. You seem discomforted and you demand it end; so for you it should.

The second thing I agree with is Daisycat saying if someone doesn't like this thread stay they should stay off of it. Daisycat said, "If you do not agree with me start a thread about how wonderful life can still be…. I promise I won’t keep coming back to it to disagree with you."

Thank you Dasiycat for being courteous and respectful. Your honesty not only blesses me but I believe your expressions may help motivate capable researchers to devote life and effort to solving the riddle MS presents.

You are a dear, dear, woman. All the best to you, Daisycat.

[pennstater]

I also agree the thread sould be closed. The original question was "is it possible to get over the humiliation of this". There have been many responses.

For Daisycat, the answer is no and she doesn't appear to want to make any attempt to, other than denial of a diagnosis. Which is fine. Daisycat's choice on how to deal. But start a new thread, for venting, raging, choices to make for worst case scenarios, living in denial, whatever.

The discussions here no longer appear to have anything to do with the original topic.

[Daisycat]

Myoak -
I agree that if people do not like this thread they should stay away. It has helped me realize things and put off my Switzerland trip for years. I’ll never accept this or be happy with thins but that is my choice. Other people view it differently and I get that is why they are offended. I just do not understand why they are bothered by my plans to end my life on my terms one day.


Pennstater -


You are correct I will never get over the humiliation of this. Having people look at me and judge me and wonder if my mind is going everyday is not something I want. And yes denial of this curse is the only way I am not on a plane to Switzerland now. Denial of this for as long as possible will allow me to live a semi normal life. And again for me anything that causes me to lose my independence is worse case scenario.


I have many different worst case scenarios in my mind and some are stuff you only can imagine in nightmares (locked in syndrome) and some are simply having to quit my job and losing my independence.

[gargantua]

An interesting thought too! Vent about how terrible you view a possible future to the very people who are living it. I understand a little fustration, anxiety, fear even hopelessness but at some point keep telling people that you consider their life to be basically useless....come on. Wheres the love?

I just wanted to say my comment wasn't meant as an attack, and I'm not sure this one above is either. If these forum discussions are for everyone, then people need to be able to philosophize without being categorized as unsupportive?

I'm not in a wheelchair or walking with a cane right now, but people with canes and in wheelchairs are my people. Even if someone is talking about themselves when they say ending up that way would be 100% hell, it's a slippery slope before people start saying they should all be sent to a special island or not allowed in certain places because it's not safe, or federal budget cutting leads to less facilities for disabled.

I shouldn't be posting in this thread anymore, but it's been bothering me. I am not saying it isn't a legitimate thing to be distressed about Daisy, it really is and I'm distressed about it too (but with vision) - it could mean loss of independence and humiliation, which is what we are grappling through here?

[Daisycat]

I am sorry if I am offending anyone, but for ME having to lose my job and spend my life not being able to take care of myself is a hell. For me I refuse to live that life because I value my freedom and independence. And yes for me going part way blind would be the same thing.
And yes for me being in a wheelchair or part way blind would be humiliating because people would be looking at me like I had two heads and wondering what was wrong with me. I would become a burden on my boyfriend and he would basically have to care for me as if I was a child.

Today I


1. Drove myself to my eye Dr appt- eyes are fine just need new contacts
2. Took my dog to the dog park
3. Went to the gym twice
4. Plan to get a tattoo later

none of these things are things I can do once I lose my independence. If I can’t see normally I can’t drive myself- (same for being in a wheel chair)

I also would not be able to work anymore… so basically my life would be sitting on my couch doing nothing. For me that is not living and I am sorry if someone has a problem with how I feel , but I just refuse to let this curse make me into my worst nightmare.

[oceanpride]

To answer your question Daisy. I’ve never gotten over the humiliation of it.

I’ve been ashamed of having MS for 14 years now.
Of being damaged goods. Of being less than the majority.
But after all this time I’ve accepted it more. Not completely but enough to keep going. It’s made me a harder tougher man, and at the same time a softer more compassionate man. And all I ever can bring myself to call it is MS. You can almost blurt that out quick , before your mind knows what your mouth is saying, and then it’s too late.
I know your plenty tough on the outside. It’s the inside that’s getting beat up. Like me. After awhile, like anyone who gets beat up enough your inside will toughen up too. Mine did.
Yours will.

I looked into all the Swiss stuff. Years ago. No one way plane tickets yet. I won’t even miss a days work, even when I’m sick , even when I just can’t go , I do because I don’t want to give into this. I thought maybe this was all just a man thing but I guess not. So 14 years ago, I don’t even know what day or month ,I was told “You have multiple sclerosis. There’s no cure. There’s nothing we can do for you “
I’ll never forget that. I’m PPMS so there was nothing.
I’m ranting now so I’ll stop but just know you’re not alone. I know I’m not alone.

I’m not alone because of this foram. I’ll never go see a therapist. The people here are my therapy. I don’t know how I’d do it alone. I couldn’t. You don’t have to either. The people that created and keep this foram going are special. I’m forever grateful.

[Temagami]

You´ve got me pondering about the concept of independence. Do we grow our own food, raise horses for transport, build our own houses, etc.? No, we are already dependent on many other people for our daily existence.

When I see someone with an obvious mobility issue doing their own shopping at the grocery store I admire their perseverance. When I see someone traveling alone with blindness I admire their bravery. If you look at the stats on preexisting conditions in this country there are millions upon millions of people dealing with serious health issues.

Please pursue ways of coping. MBSR- mindful based stress reduction based on Jon Kabat Zinn´s work would make an enormous addition to your toolbox for coping. It would carry over to your work in dealing with emergencies and co-workers and into your relationship in dealing with those days when your partner drives ya nuts. You´ve already covered your bases on how to deal with your worst case scenario. Now how are you going to deal with all those days, months and years before that may even happen?

[Daisycat]

To answer your question Daisy. I’ve never gotten over the humiliation of it.

I’ve been ashamed of having MS for 14 years now.
Of being damaged goods. Of being less than the majority.
But after all this time I’ve accepted it more. Not completely but enough to keep going. It’s made me a harder tougher man, and at the same time a softer more compassionate man. And all I ever can bring myself to call it is MS. You can almost blurt that out quick , before your mind knows what your mouth is saying, and then it’s too late.
I know your plenty tough on the outside. It’s the inside that’s getting beat up. Like me. After awhile, like anyone who gets beat up enough your inside will toughen up too. Mine did.
Yours will.

I looked into all the Swiss stuff. Years ago. No one way plane tickets yet. I won’t even miss a days work, even when I’m sick , even when I just can’t go , I do because I don’t want to give into this. I thought maybe this was all just a man thing but I guess not. So 14 years ago, I don’t even know what day or month ,I was told “You have multiple sclerosis. There’s no cure. There’s nothing we can do for you “
I’ll never forget that. I’m PPMS so there was nothing.
I’m ranting now so I’ll stop but just know you’re not alone. I know I’m not alone.

I’m not alone because of this foram. I’ll never go see a therapist. The people here are my therapy. I don’t know how I’d do it alone. I couldn’t. You don’t have to either. The people that created and keep this foram going are special. I’m forever grateful.

I think this curse has taken any compassion I have for normal people and killed it. I still have my compassion for animals, but I cannot bring myself to care about someone’s petty little day to day bs problems anymore.

And to be honest I fill like I died on the inside last September 21^st. I will never be that person who was happy and hopeful again. I am like you with not missing work. Those few days I was in that “prison” are the only days of work I ever missed. I cannot do that again.

I know I am not “alone” but in my real like I feel like I have no one. That is why I am thankful for people like you. You make me feel not as alone.

[Daisycat]

You´ve got me pondering about the concept of independence. Do we grow our own food, raise horses for transport, build our own houses, etc.? No, we are already dependent on many other people for our daily existence.

When I see someone with an obvious mobility issue doing their own shopping at the grocery store I admire their perseverance. When I see someone traveling alone with blindness I admire their bravery. If you look at the stats on preexisting conditions in this country there are millions upon millions of people dealing with serious health issues.

Please pursue ways of coping. MBSR- mindful based stress reduction based on Jon Kabat Zinn´s work would make an enormous addition to your toolbox for coping. It would carry over to your work in dealing with emergencies and co-workers and into your relationship in dealing with those days when your partner drives ya nuts. You´ve already covered your bases on how to deal with your worst case scenario. Now how are you going to deal with all those days, months and years before that may even happen?

But all of those things are different than basic daily care. Bathing myself , going to the bathroom myself , driving myself , working , paying my own bills – are all a big part of my independence.

And as for how I am going to deal with all of these days between now and Switzerland…still working on that one. OTC and prescription (legal) drugs are a nice start...