Is it possible to get over the humiliation of this

[Daisycat]

I think what a lot of people here are not understanding that for me ANY more complications related to this disease is a dark future that I do not want. The only future I want is one where I do not ever have another flare. (well my dream would be for this to be a misdiagnosis but if that can’t happen…) I don’t want to deal with any of the issues that this thing causes. I know a lot of people have similar issues when they are older but that is expected. It is not expected that someone who is not even 40 is going to one day wake up and need a cane to walk or be halfway blind in one eye.

I get that there are ways to “look on the bright side” and all of that but for me I just can’t see a bright side even with a second best case scenario. ( best case is never having another issue or a misdiagnosis). My jealousy of people who do not have this is horrible. I think that is a big part of why I don’t talk to anyone anymore because what do we have in common really?

I would LOVE to find actual statistics of people with this thing that never have to quit their job and actually live a full life and don’t need help walking or don’t have “cog fog”. I would google it but I know my history with good old dr google… Last time I tried that I found something that said 85% of people will eventually need assistance walking.

For me I am going to focus on my plan of working on my bucket list for as long as I can. I need to have a serious talk with my bf because as of right now I think we see the future very differently. It is not fair for me to stay with him if he cannot be on board with how I plan for things to go if it goes worst case. (and no again I am not talking about jumping off a bridge or doing something equally as messy… it is something I researched for a long time before deciding on it and knowing I have it as a back up as brought me a lot of peace.)

I really hope my new neurologist can give me some answers because right now not knowing anymore than I did a year ago is really getting to me.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[gargantua]

I know a lot of people have similar issues when they are older but that is expected. It is not expected that someone who is not even 40 is going to one day wake up and need a cane to walk or be halfway blind in one eye.

Daisy your speculations are misinformed and ageist. But you don't realize it because "you aren't even 30."

When "I wasn't even 40" I did wake up halfway blind in one eye. I continued on, to do some of my most important work and to build my economic base. As it stands I had another relapse at 55 and am now on a DMT and NOT severely disabled. Luckier than many, but here is another example that contradicts your rants 100%. You say you want statistics, but you have a large group of people responding to you with specific personal examples and like water off a duck's back you insist on upholding and perpetuating your misinformation for anyone who comes to this board to read.

[marti]

I'm so sorry Daisycat. But it sounds like you're having yourself a great big pity party right now. That's okay too. But give yourself a chance to see the reality. Lots of us go through life with MS and make it just fine. We have problems and symptoms and feel awful at times, but we don't all end up in wheelchairs or using canes.

Don't expect the worst. Keep reading and learning and find a good neuro who can explain things for you.

[Daisycat]

I am actually closer to 40 than 30 so... but a lot of older people do have health issues even without this. By older I mean 60-70 range. .

A lot of people that post here do have problems because of this or are on disability. Just read half the threads here and they are about all the problems people are having. For me having anything health related wrong is not acceptable. .

And I am having a “pity party” I’m grieving the loss of my future and health. For me any future problem caused by this is unacceptable. I really was hoping someone here would understand my pain and anger. .

Im honestly extremely confused by the attitude that this isn’t really that bad and even if you do go on disability life still is amazing. I know we all want different things out of life but I just can’t wrap my brain around how anyone can honestly say they are completely ok with having this.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KoKo]

I really was hoping someone here would understand my pain and anger.

Most of us do understand your pain and anger. We just don't enjoy being in it for very long.

Im honestly extremely confused by the attitude that this isn’t really that bad and even if you do go on disability life still is amazing. I know we all want different things out of life but I just can’t wrap my brain around how anyone can honestly say they are completely ok with having this.

Most of us realize that life is not perfect, and never will be, in regard to our own desires, so we get on with playing the hand we were dealt.

Take Care

[Daisycat]

Its not that I enjoy being this miserable and knowing I will have to be this way for however long I have left... My problem is a little over a year ago I was happy , healthy , had a future planned out , had friends - basically everything I had worked for.


I woke up the morning of September the 18th 2017 and thought I was going to work like it was a normal day. I had no idea that my life was going to change forever that afternoon. The pain of having my good life ripped away from me for no reason just feels me with so much anger and sadness I do not see how I can get over this.


And yes life isn't perfect but some people sure as %%%% have better lives than others and I want nothing to do with the people who the universe has decided deserve happiness and health. I just really want to know if this is all the world has for me... growing up and building a life and being happy just to rip it all away... why even let me be born just to make me suffer.

[marti]

Its not that I enjoy being this miserable and knowing I will have to be this way for however long I have left... My problem is a little over a year ago I was happy , healthy , had a future planned out , had friends - basically everything I had worked for.


I woke up the morning of September the 18th 2017 and thought I was going to work like it was a normal day. I had no idea that my life was going to change forever that afternoon. The pain of having my good life ripped away from me for no reason just feels me with so much anger and sadness I do not see how I can get over this.


And yes life isn't perfect but some people sure as %%%% have better lives than others and I want nothing to do with the people who the universe has decided deserve happiness and health. I just really want to know if this is all the world has for me... growing up and building a life and being happy just to rip it all away... why even let me be born just to make me suffer.

Well, I give up. There is no helping you. Good luck to you. Wishing you a perfect fairy tale life.

[KoKo]

The pain of having my good life ripped away from me for no reason just feels me with so much anger and sadness I do not see how I can get over this.

An attitude adjustment and some therapy is one way to help you to deal with it.

It was very helpful for me.

Take Care

[Daisycat]

You are right there is no helping me. I am 100 % alone. Even people with this thing can’t relate to me. . As for an attitude adjustment I don’t see how that’s possible. I hate myself and like I said before I don’t understand at all how anyone can be happy knowing they have this. . I really hoped coming here would 1. Help me find someone who I can relate to and maybe have someone to talk to about this pain. This disease causes such loneliness. . 2. Understand how people can actually accept this but that I know won’t happen. I see this completely different than everyone here and that is just so confusing to me that people are ok with this.

[KoKo]

As for an attitude adjustment I don’t see how that’s possible.

Try the attitude of gratitude. It works for me.

I look at all the things that are going right in my life, the many things that I can feel grateful for.

The big things and the small, seemingly insignificant things.

I practice this principle daily and it helps me to feel better.

Take Care

[Daisycat]

Honestly I really try and I can’t think of anything to be thankful for.(besides the normal house, food, car stuff) I look back on everything I had 1 year ago and it feels like the wound Is being reopened for the 1000000 time. . I was really hoping after yesterday things would start to look up but as hard as it is to believe I feel worse. Only good thing that happened yesterday is my tattoo shop takes credit cards now.... so I can at least finish all the tattoos I want soonish.

[KoKo]

Honestly I really try and I can’t think of anything to be thankful for.(besides the normal house, food, car stuff) I look back on everything I had 1 year ago and it feels like the wound Is being reopened for the 1000000 time. . I was really hoping after yesterday things would start to look up but as hard as it is to believe I feel worse. Only good thing that happened yesterday is my tattoo shop takes credit cards now.... so I can at least finish all the tattoos I want soonish.

I'm sorry that things look so bleak to you, Daisycat.

Do you think that you are suffering from clinical depression?

If so, there is help for that. It is treatable.

Would you even consider therapy to help you?

Take Care

[Daisycat]

I know I am depressed. I don’t really care about anything anymore except my pets since they didn’t ask to be my pet... it’s my job to care for them no matter how I feel. . I actually looked into therapy. I found two my insurance covers that aren’t “Christian based” and are accepting new patients. I only emailed... haven’t worked up to calling yet but neither have responded. .

[Jules A]

Its not that I enjoy being this miserable and knowing I will have to be this way for however long I have left... My problem is a little over a year ago I was happy , healthy , had a future planned out , had friends - basically everything I had worked for.


I woke up the morning of September the 18th 2017 and thought I was going to work like it was a normal day. I had no idea that my life was going to change forever that afternoon. The pain of having my good life ripped away from me for no reason just feels me with so much anger and sadness I do not see how I can get over this.


And yes life isn't perfect but some people sure as %%%% have better lives than others and I want nothing to do with the people who the universe has decided deserve happiness and health. I just really want to know if this is all the world has for me... growing up and building a life and being happy just to rip it all away... why even let me be born just to make me suffer.

Now I'm jealous of you. Sounds like your life was so perfect for almost 40 years that the thought of having something actually not go your way is unfathomable. Granted MS is a biggie but seriously were you given the expectation that life was fair or kind?

This makes me think of the coddled millennials who have had their parents in their faces, video taping every step and insisting their finger paintings are superior to Picasso. There are no losers! Everyone gets a trophy! You are entitled to a Work:Life Balance!

When it turns out that the world isn't as enamoured as Mommy and Daddy its a brutal lesson. Maybe those of us who were kicked around from day one actually have a leg up in this instance?

[KoKo]

I know I am depressed. I don’t really care about anything anymore except my pets since they didn’t ask to be my pet... it’s my job to care for them no matter how I feel. . I actually looked into therapy. I found two my insurance covers that aren’t “Christian based” and are accepting new patients. I only emailed... haven’t worked up to calling yet but neither have responded.

I'm glad to know that you are looking into therapy, Daisycat.

It would be wonderful if you were able to start feeling better.

Take Care