Is it possible to get over the humiliation of this

[Jennaly16]

Ticked off

I have to say that this thread is the reason i joined MSWorld.
I was diagnosised 6 months ago and not once did i think my life was over. Not once did i sit there and think this is the end i needed a bucket list.

Daisycat- you really tick me off because you have such a negative mindset. People get diagnosis with terminal cancer and they don't have the self pity that you have.

What won't you be able to do in the future? Do you think you are waking up crippled tomorrow? wheelchair bound? memory gone? People have lived decades with MS and aren't in that condition. We at least have newer drugs that will improve our treatment and quality of life. We should be thankful that if we have to have this disease we have it now!

And change your negative mind! You will one day end up in a bad place because you let your mind go there. Not one thing in my life has changed except maybe being tired more often. I get my treatments (Tysabri where i look at it as 2 hours of alone time a month since i do have a small child), i give myself that day to treat myself to whatever i want and then i move on with life. You either chose to live your life with MS being a small part of it or you seal your own fate.

Just stop with the self pity!

[KoKo]

We at least have newer drugs that will improve our treatment and quality of life. We should be thankful that if we have to have this disease we have it now!

Good point, Jennaly16. There is a lot going on with MS research at this time.

I get my treatments (Tysabri where i look at it as 2 hours of alone time a month since i do have a small child), i give myself that day to treat myself to whatever i want and then i move on with life. You either chose to live your life with MS being a small part of it or you seal your own fate.

That's a great outlook, Jennaly16.

Thanks for sharing!

Take Care

[kittysmith]

Tired of the negativity

You know what, Daisycat, I give up. You have monopolized this board for weeks. This post is up to 4 pages, you had another one that was 5 pages. I was very down and depressed last week. I posted on this board looking for support. You know how many replies I got? One. One! And you are still ungrateful for all we have done.

Just admit it. You have no intention of listening to anything we have to say. Are you enjoying the drama? Are you trolling us (I am really starting to wonder)?

Get over yourself, Daisycat. Either you want to live with MS or you want to wallow in your own self pity. I, for one, refuse to feel sorry for myself. I don't mean to sound harsh, but, frankly, I am fed up with these posts. Many of us would love to get the type of attention you are getting on this site.

[KoKo]

Either you want to live with MS or you want to wallow in your own self pity. I, for one, refuse to feel sorry for myself.

kittysmith

It's a very wise choice that you make to stay away from self-pity. It's a harmful emotion to hold on to for very long.

A negative emotion is very sociable ~ when you invite one into your mind, before you know it, all of the other negative emotions tend to show up to the party (anger, resentment, hopelessness, envy, self-contempt, and on and on).

Take Care

[kittysmith]

Thank you, Koko

kittysmith

It's a very wise choice that you make to stay away from self-pity. It's a harmful emotion to hold on to for very long.

A negative emotion is very sociable ~ when you invite one into your mind, before you know it, all of the other negative emotions tend to show up to the party (anger, resentment, hopelessness, envy, self-contempt, and on and on).

Take Care

Koko

Thank you so much for your response. Also, thank you for responding to my post the other day. I was feeling very alone and you had such kind words for me.

I have no problem with anyone on the board. I just feel like the rest of us are falling through the cracks. It's basically the same post over and over with us giving the same answers over and over. I will remain positive. I have a husband and a child to take care of. I have a full time job that I'm proud of. I can't just give up.

I hope new folks who are reading this are taking into consideration that Daisycat is presenting a "worst case scenerio" that is out-dated. 10 years since my diagnosis and I'm still able to walk, talk, and see. Still working in the same position I was in when I was diagnosed.

Hang in there, newbies. It's a bumpy ride at first, but it's still a good life.

[Seasha]

. I hope new folks who are reading this are taking into consideration that Daisycat is presenting a "worst case scenerio" that is out-dated. 10 years since my diagnosis and I'm still able to walk, talk, and see. Still working in the same position I was in when I was diagnosed.

Hang in there, newbies. It's a bumpy ride at first, but it's still a good life.

Nicely put and so true, kittysmith!

I'm coming up on my 30 years and still gardening and helping watch my toddler grandchild, doing yoga and getting exercise according to my abilities, among other important things. I'm slowing down, but then I'm almost 70 yrs old! It's been a good ride~~~

[KoKo]

I will remain positive. I have a husband and a child to take care of. I have a full time job that I'm proud of. I can't just give up.

Good for you, kittysmith! You help to inspire others with your good attitude and outlook on life.

All the best to you and your family!

Take Care

[Daisycat]

I really do not care if I make you angry. You can get over it. I have every right to feel that my life is over and I am never going to be positive about my future. There is nothing about this hell to be thankful about and not one person is going to change my mind. I am also not going to stop with what you call self pity. I had a great life and exactly one year ago it was robbed from me.

Kitty you know why I didn’t reply to your thread? Because my views here aren’t welcome by many people and I didn’t want to drag your thread down since I would have had nothing positive to add. I hope you feel better but like I said with this curse I can’t be positive. And no I am not trolling you people. I read more and more of the posters here saying how they are on disability and had to quit work and I just get more depressed. That is not living.

I am not going to learn to live with this curse. I am going to wait until it progresses to where I can no longer do the things I love and get a hold of that place in another country. It is MY life and I have every right to decide how it will go.

Today is my one year anniversary of when my life ended and I have EVERY right to be humiliated, sad , depressed , and pissed off. If someone has a problem with me coming here to vent since I have no one in real life to talk to stay off the thread. I appreciate the things people said and I do feel like for me there are positive things I have done. I’ve made goals I want to accomplish before this thing takes my life. Its not what I envisioned my life being but since now I am only paying my minimum payment on my student loans I have plenty of money for fun bucket list stuff.

And honestly if people really have that much of a problem with me not seeing rainbows and unicorns in this hell please just ban me from the boards. I thought this was a place where every view was welcome.

[KoKo]

...I have EVERY right to be humiliated, sad , depressed , and pissed off.

Yes, Daisycat, you do have the right to express your feelings here.

And the other members have that right as well.

Take Care

[tl-tr3]

.

.
I don’t see how some of you people tell everyone.

You people??? If you are so disgusted with/by us why are you spending so much time here asking the same questions over & over?

[kittysmith]

Wow, Daisycat! You sure are angry.

I really do not care if I make you angry. You can get over it. I have every right to feel that my life is over and I am never going to be positive about my future. There is nothing about this hell to be thankful about and not one person is going to change my mind. I am also not going to stop with what you call self pity. I had a great life and exactly one year ago it was robbed from me.

Kitty you know why I didn’t reply to your thread? Because my views here aren’t welcome by many people and I didn’t want to drag your thread down since I would have had nothing positive to add. I hope you feel better but like I said with this curse I can’t be positive. And no I am not trolling you people. I read more and more of the posters here saying how they are on disability and had to quit work and I just get more depressed. That is not living.

I am not going to learn to live with this curse. I am going to wait until it progresses to where I can no longer do the things I love and get a hold of that place in another country. It is MY life and I have every right to decide how it will go.

Today is my one year anniversary of when my life ended and I have EVERY right to be humiliated, sad , depressed , and pissed off. If someone has a problem with me coming here to vent since I have no one in real life to talk to stay off the thread. I appreciate the things people said and I do feel like for me there are positive things I have done. I’ve made goals I want to accomplish before this thing takes my life. Its not what I envisioned my life being but since now I am only paying my minimum payment on my student loans I have plenty of money for fun bucket list stuff.

And honestly if people really have that much of a problem with me not seeing rainbows and unicorns in this hell please just ban me from the boards. I thought this was a place where every view was welcome.

So, I would drag you down with my post about sharing something positive? You are draging your own self down. You have been treated so nicely by our group. I have tears in my eyes now. I hope it was worth it. You are being very, very rude. I will not waste my words on you again. And, you may get to a place where a lot more people are not going to tollerate your negative attitue and behavior. Some folks rise to the occasion, and some just sink. You self pity for yourself and I'll stay positive for myself.

Tears dried. Moving forward. I'd wish you good luck, but you don't believe in good luck. See ya.

[pennstater]

I continue to respond, at this point, more for others than Daisycat. I know Daiscat doesn't want to hear what I have to say. But for others reading the boards, I want them to know you can live life with MS. You may need to adapt along the way, but the majority of people with MS go on living life. Daisycat is stuck on worse case scenarios, based on outdated statistics. So for those really interested, go to reputable sources and read the studies.

To live life with MS, you need to move thru the various stages of grief. You may get stuck and need help moving thru them. But if you do, you do get to acceptance and live life. And you may revisit some stages, all normal. Just don't get stuck.

From my infusion center, I know the younger people (40 and under) are almost all doing well. They are working full time, taking care of kids, coacing, teaching yoga and music,and enjoying life. They are not on this board, mostly they say they don't have time.

So yes Daisycat,there are those of us on the board who did have to give up careers, but if you go back and read the stories, most of us didn't have the option of early diagnosis and treatment with a DMT. Progression is believed to come from damage along the way. Had I been diagnosed earlier and on a DMT, I most likely would not have had the progression that made me stop working. I am basing it on the fact that Tysabri halted my relapses and progression. It may seem like more folks on here had to go on disability, but it is also distorted by the fact that the most active users are the ones that have the time to be here.

[Daisycat]

I said you people as general blanket coverage. It wasn’t meant to offend anyone. But yes I do not see how anyone can tell everyone like this is no big deal. It is a very big deal and I am ashamed that I had to tell the people I did. And I am not disgusted with anyone here. I for sure don’t understand 99% of the people here and how casually they act about this thing.

When did I say you would drag my post down? I said I would drag YOUR post down since I have nothing positive to say about this. This curse is what is dragging me down. It has taken so much from me and is going to take so much more and I just do not see how I can be positive about that. You can stay positive all you want to. Today of all days I am not going to be happy , positive , or even my fake happy mood I put on at work. My life ended exactly a year ago and I am more depressed and angry about it then I ever have been. And for what it is worth you have for the most part been positive and helpful.

I know I say I will never be happy again (which is true) but I think you are one of the posters here that is still able to work and that gives me hope that I might be able to make it more than 10 years. So no kitty I was in no way trying to offend you.

I am also furious that I have not had a real Dr to help me with anything through this and it bugs me when people tell me here my medicine I am using is not good. I am sorry but I CANNOT have immune suppression or medicine with insane copay. Those two things right there know out a lot of the newer more effective medicines.

I am really not meaning to offend anyone but I am so so so so angry that my future has been stolen from men and no one not even people who share this seem to understand. I am basically alone in this world and that really sucks… not as much as having this curse sucks but it is a close second.

And BTW I do think I have made some “positive” changes. I am working to lose 15-25 pounds, walking my dog again (when it’s not 100 degrees) , working on my “bucket list” (mostly fun and cool things I have always wanted to do)…. My 16 year old cousin has a bucket list and she is 100% healthy so I do not see why it is offensive that I have one.

[Daisycat]

I continue to respond, at this point, more for others than Daisycat. I know Daiscat doesn't want to hear what I have to say. But for others reading the boards, I want them to know you can live life with MS. You may need to adapt along the way, but the majority of people with MS go on living life. Daisycat is stuck on worse case scenarios, based on outdated statistics. So for those really interested, go to reputable sources and read the studies.

To live life with MS, you need to move thru the various stages of grief. You may get stuck and need help moving thru them. But if you do, you do get to acceptance and live life. And you may revisit some stages, all normal. Just don't get stuck.

From my infusion center, I know the younger people (40 and under) are almost all doing well. They are working full time, taking care of kids, coacing, teaching yoga and music,and enjoying life. They are not on this board, mostly they say they don't have time.

So yes Daisycat,there are those of us on the board who did have to give up careers, but if you go back and read the stories, most of us didn't have the option of early diagnosis and treatment with a DMT. Progression is believed to come from damage along the way. Had I been diagnosed earlier and on a DMT, I most likely would not have had the progression that made me stop working. I am basing it on the fact that Tysabri halted my relapses and progression. It may seem like more folks on here had to go on disability, but it is also distorted by the fact that the most active users are the ones that have the time to be here.

I do not consider quitting my job and being a burden on my boyfriend “living life”. And that is not even my vision of worst case scenario. That is middle of the road scenario for me. For me there is no “adapting” at work. I am either able to do my job or I have to go on disability. That though terrifies me. I just do NOT understand how people can just accept this and not be depressed and angry. If I ever feel the slightest bit of happiness I see people who don’t have this curse and I am slapped back down to my dark hole of despair.

I just really hope my new neurologist can answer some of my questions. I think being left to Dr google for the past year has made things 100 times worse. But when I asked my old neurologist a question the response was “will discuss at next appointment” then he was in and out in 5 minutes. Not exactly being warm and caring.

[Seasha]

I am also furious that I have not had a real Dr to help me with anything through this and it bugs me when people tell me here my medicine I am using is not good. I am sorry but I CANNOT have immune suppression or medicine with insane copay. Those two things right there know out a lot of the newer more effective medicines.

I would feel angry too about your doctor and hopefully, this next one will listen and give you accurate information about everything MS! Also Daisy, many many here have financial assistance with the DMT they are taking. Here is a chart with the drug companies and numbers to call if you should choose another med https://www.msworld.org/forum/showth...ial-Assistance

And BTW I do think I have made some “positive” changes. I am working to lose 15-25 pounds, walking my dog again (when it’s not 100 degrees) , working on my “bucket list” (mostly fun and cool things I have always wanted to do)…. My 16 year old cousin has a bucket list and she is 100% healthy so I do not see why it is offensive that I have one.

It is certainly not offensive that you have a bucket list. Rather, we applaud you for having one and going after your dreams! Go after them with full speed ahead