Is it possible to get over the humiliation of this

[Mamabug]

... I’ll still see my dr every 6 months and take my medicine ...

... I actually made plans to hang out with friends next weekend and looked up stuff for my possible new specialty.

I'm glad to hear it! :-)

[Daisycat]

I will have a terrible life if I have nothing to focus on but this hell. I need to just act like I am not cursed and I can still have a future. What is going to happen with this is going to happen no matter what I do. I will never admit I am cursed or accept it. I am going to go see my DR and use my meds but if I want to go out with a friend and eat food that actually tastes good I will or if I want to go out drinking I will. (Although that’s not likely because people bug me)

My point is I am going to live as if I do not have this and whenever it is my time to go this curse will come back and I will make the arrangements. I am not going to struggle to live to be 60, 70, and 80, or 90 and be in pain everyday and struggle to walk and forget daily things. I’ll probably for the most part eat healthy because I want to lose weight not because I am eating healthy for this curse.


I have planned my future to where I am in control. I do not want to die but I am not going to live for this curse so whenever this curse decides to ruin my life I will accept what needs to be. I do hope it is many years from now but what is meant to be will be

[Jules A]

I am not going to struggle to live to be 60, 70, and 80, or 90 and be in pain everyday and struggle to walk and forget daily things.

I haven't ever had the desire to live to be ancient anyway and if you ask me many people in their 70s+ have struggles with pain, mobility and cognition regardless of MS or not. At this point I'm hoping to have a decent life until about 70. I'll retire early 60s and attempt to really enjoy myself if I am physically able. My husband and I have started spending a nice chunk of change on vacations over the last 4 years as we realized, again MS or not, our health and physical abilities are on the down slope now so we might as well enjoy it while we can.

There are few people older than 80, even the spry ones, who's lives even look remotely appealing to me anyway. Regardless I prayed for 10 years before becoming bedridden after my MS diagnosis and I've already exceeded that by 4 so while now I'm definitely getting greedy I am also thankful for the good years I have already lived in spite of this crap diagnosis.

[Daisycat]

My dad is in his 70s and is in amazing health. I guess I always thought I’d get lucky and follow him. I guess we all can’t be that lucky though.

[Daisycat]

Actually now that I think about it most of my family lived long and healthy lives. My great grandmother lived into her early 90s with no need for assistance ever.

My great grandfather died from cancer (he decided to stop treatment because feeling as bad as it made him feel wasn’t a life to him).

Besides him no one else in my family had anything health wise that was serious. So I guess finding out I’ll one day have to make a tough call is a shock to me. I mean I know it’s the right choice it’s just going to suck.

But im going to go out on my own terms. I believe everyone deserves that right. (In most cases there are exceptions)

[headrift]

My dad is in his 70s and is in amazing health. I guess I always thought I’d get lucky and follow him. I guess we all can’t be that lucky though.

You might still. You need to remember that MS isn't terminal. Something else might get you (and something eventually will) but it won't be MS. Just keep yourself in shape, eat right and so on. Same as for anyone, it just has more effect on us.

Basically... MS might be a "curse" as you put it, but it's an extra bad one in that it won't kill you. If you do want to die, that's on you, and I'm pretty sure any doctor in the world would tell you that.

[Daisycat]

I’m going to eat right and work out but if I want to skip a day or a week I’m going to.


If i if I want to go hang out with friends and drink and smoke I will. (Can’t smoke like I used too... i like money)

I’m not going to be worried about how caffeine is bad for this. (Somethings say yes some say no)

Point is I’m going to live on my terms and I’ll decide how my life ends on my terms not this or anything else.

And as I’ve said I don’t want to die today, but 10-20 years from now I don’t know if I can say that.

[headrift]

Well said... I smoke, I drink alcohol, I drink caffeine, and eat a variety of greasy yet tasty food. I spent a lot of years being suicidal (before MS) and eventually walked away from it. Thinking "I'm going to kill myself tomorrow" does nothing but get in the way of living life with full energy and concentration.

So yes, death doesn't scare me nearly as much as suicide anymore. We'll see if that changes in the next 20 years. *shrug*

[marti]

Well congratulations. It sounds like you are starting to think more positively. Maybe this board has helped you after all. Once you stop fighting it you might find more comfort.

By the way, I missed your introductory posts so I don't know anything about your symptoms. Do you care to repeat some of your history? Or direct me to the thread you started when you first met this board.

[Jennaly16]

Daisycat- your right, you have the worst life ever. You have the worst prognosis ever. Just give up now. You will never walk, you will never see, you will never enjoy the best years of your life. In the ranking of worst life- you are number 1.
DO YOU FEEL BETTER NOW?

Now, let's be realistic. Anyone with a terminal illness diagnosis would switch spots with you in a second. And they would take your spot with the biggest smile ready to enjoy every day that comes after. They would not complain. They would not write thread after thread of how much life sucks. In fact, they wouldn't be on here because they'd be too busy living!

Get help. And i'm not trying to be mean but you need more than a neurologist, you need a psychologist because you need to work these thoughts out. You are allowed to be angry, confused, worried, sad but you are not allowed to spend everyday like it's dooms day. So many before us (us being newly diagnosis) have lived full lives, work full time, raise children, exercise, are in their 70's and 80's. They are an inspiration. If you wake up tomorrow wanting to quit, fine. But the day after you better wake up ready to conquer. Don't become a statistic from decades ago.

The first thing my neurologist said was don't quit your job, live your life like you did yesterday and look at this as a minor hurdle. The moment you make it your life, your life becomes nothing more than this disease.

Get it together. Hopefully tough love will set you straight. But if you respond with more "the world is over", i'm done trying to be uplifting because nothing will help you.

[Daisycat]

Death doesn’t scare me anymore really. I do not consider using services provided by a medial facility (even if it is in another country) as suicide. I know in a way it is the same but I see it as different somehow.



Marti – my only symptom ever was one episode of double vision. MRI showed lesions, bands were in my lumbar puncture. I do not have any symptoms today ( well except extreme depression and anxiety but I think it is caused because I have this disease not because the disease is causing it)

Jennaly – If I accept this hell and live thinking that I have this disease every day I will have the worst life. There is NO WAY for me to be happy with this disease. So like I have said as far as I am concerned I do not have this disease. I will see my DR every 6 months and use my medicine – other than that I am going to live my life how I want. I am done worrying about what is and is not good for this. I would rather have 10-15 years where I am not miserable instead of 20-25 where I cry all day and do nothing but sleep.



Life with this curse does suck and anyone who says it doesn’t is not being honest. Take a look at the end stage of this hell ( I don’t even mean worst case scenario) and it is not pleasant or what I would even consider living. I am not wasting my time talking to a psychologist because they would want me to accept this curse and that’s not happening. Yes any day could be doomsday but until that day I am going to act like I actually have a future (like I did a little over a year ago).



Once doomsday comes I only have to wait 3 months or so before my final paperwork will go through and I won’t have to suffer my vision of what will happen one day. If a neurologist ever told me this was a minor hurdle I would run as far away from him as I could. I want a neurologist that’s going to be honest with me on the two days of the year I “have” this curse.



It is not being uplifting by telling me to accept this curse. I do not want any of the issues that this hell causes and honestly I think certain people like you just can’t get it. That’s OK like I have said before everyone is different and some people are OK with things that others are not. For me I am not and will never be OK with ANYTHING that this curse causes that takes away my job or independence.

[marti]

Okay Honey... I said I was done with you but I came back. I thought I had something to contribute to set you on the path to recovery. But you are clearly enjoying this back and forth with all of us. If you weren't you would have bailed out of this thread a long time ago. But instead you keep it going with your long dramatic teen-age type messages. You seem to be something of an attention hog and we've all given you plenty of it!

In my 17 years on this board I have never met anyone so needy and so determined to attract so much attention. I'm not trying to discourage you from coming to us on MSWORLD, but there are other support groups online you could join. You might get more sympathetic responses, which you crave so badly from other groups. The people here are loving, kind, helpful to suffering MS-ers and their families and friends.

You have been blessed so far with few symptoms. Be happy. Be well.

[Jules A]

Okay Honey... I said I was done with you but I came back.

Yeah like 6 more times including multiples quoting others who are frustrated with her.

We all have our own way of coping. Attempting to change someone's mindset is futile. We can offer our experiences, suggestions and support but getting offended because someone isn't interested in what we believe to be our sage advice makes it about our ego and not the person we believe we are helping.

[Daisycat]

Im sorry but if someone is going to disrespect my feelings I’m not going to respond kindly.

I’ve looked at other boards and from what I’ve seen most people with this curse want to bury their head in the sand and ignore the very real possibility of how their life will end.


I have made made a positive change. My life is mine now. I’m going to do what I want and not worry about how it’s going to affect this curse. I just had my first cigarette this morning. I plan to only have them occasionally but the calmness it causes can’t be beat.


Im going out drinking with friends this weekend and I’ll probably avoid the gym after that night. I’m not going to live with this curse.


I just sent my membership fee in to my place I will use for when you this disease makes my life worthless.


if you don’t like my opinion on this please don’t post. I came here originally looking to see if I could accept this curse and I found out I can’t.


And I’m not expecting sympathy. I just figured at least one person here would understand my feelings. It blows my mind that people are actually ok with this curse.

[Daisycat]

Jules- thank you. I appreciate your post. I know you haven’t always agreed with me but this post means a lot to me.


I do appreciate all the different views and experiences shared by people here but as much as I was hoping for a way to be happy with this it’s just not in the cards for me.

And im ok with that. That’s what posting here has made me realize. It is very helpful to get out my feelings somewhere so I can live my life like I don’t have this curse.

Again thank you for your kind post. It really does mean a lot