Is it possible to get over the humiliation of this

[gargantua]

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.

Yeah, and that takes time. Between the lines, you've expressed a lot of love for your life before MS. By keeping on doing the things you need to do to take care of yourself and by enjoying your "regular" life, maybe things will go better than you expect. The only thing ALL of my doctors have said, though, is to not smoke. They are more wishy-washy on things like diet and alcohol. Go figure.

Good luck Daisy. You're a pistol!

[marti]

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.

Jules I'm not offended at all. Just frustrated.

[oceanpride]

Good Daisy I’m happy to read your last posts. I think you needed all this and to make up your own mind on how to deal. We actually think the same but your not afraid to say. This board is a great place for help and somehow I think you got some. Yes pick yourself up and get going. Cross your bridges when you get to them. Your going to be strong and you’ll be able to help some others. Wishing you all the best and good luck.

[Daisycat]

Thank you oceanpride. It is nice to see someone that actually understands where I am coming from. I know it is a touchy subject to some to say I will end my life on my own terms and not suffer because of this disease for years. This board made me realize I don’t want to spend anytime suffering from something caused by this disease that isn’t going away. I am hoping for another good 15-20 years but I’ll see what happens.


Marti – no reason foryou to be frustrated. We just see this differently and that is OK to me and it should be OK to you and everyone else.



Gargantua – I really hope things are better than I am expecting, but this disease has at least taught me to be prepared for anything and do not get your hopes up. I will take each day as it comes and once I get to a certain point I have made peace with what will happen.


Again I really do appreciate the people here who are helpful and let me vent. Venting here is a nice way to get out my stress. I decided I am not going to go to a therapist since they aren’t likely to be on board with my plans for my future and really there nothing they can do for me since I cannot accept this curse and be happy knowing my brain is slowly being destroyed. All I can hope for is my new neurologist will discuss CIS with me, give me an honest outlook for what this curse means for me , talk to me about if I should switch medicine , and spend more than 5 minutes with me.

[Tawanda]

I have a feeling that you will not turn into a (fill in the blank). At least not any sooner than any other human being on this planet will once they get old.

We pw/MS probably ALL had a similar worry at an earlier point. Eventually life just kind of nudges you forward, whether you have a ticket to Switzerland or not. I am the most bitter person on the Board I think and even I feel better at this point in my life (old) than when did early in my journey...

But whatever you do, Missy, don't smoke!!!

[Temagami]

Daisycat,

I doubt that anyone on here is happy with MS, rather, we have managed to feel happy in spite of MS.
Folks here are not okay with having MS; we have sought ways to cope and not let it rob us of anymore than it already has or does. If you think of MS as a pickpocket thief, you are calling the thief back to check the rest of your pockets.

Bill Moyers did a whole series on PBS TV called On Death and Dying. I was fascinated by the story of a veterinarian with ALS. At the beginning, the vet said he´d check out if he couldn´t toilet himself, that came and he stayed alive, then he said he´d check out if he could not feed himself, that came and he stayed alive-it kept getting worse and yet the instinct to keep going kept him on this side of earth. I do understand how one could logically choose suicide/euthanasia. Personally, I´d have to be in a world of hurt to reach that point. The flip side is that the world is truly a magical place. I remember shortly after 9-11, I went outside and happened to look up and see a Canada goose did a 360 roll, just for the fun of it- never saw it before or since. I felt awful for those who had died and would never see such a sight. When you are in the midst of a surgery, do you still feel the wonder of seeing a beating heart, pulsing blood vessels, a diaphragm raising and lowering? Are you still awed by the complexity of a biological system?

What websites are you using as your source of info? Do you want references to sites that others have used to learn more?

[Daisycat]

I do not plan to buy my ticket to Switzerland yet. I just am just a member to where I can buy one when needed.

I hope I never need it but I will not live any day longer than I have to in my nightmare. I really wish this country had more sympathy for people but maybe one day.

[Tawanda]

I do not plan to buy my ticket to Switzerland yet. I just am just a member to where I can buy one when needed.

I hope I never need it.

That would be my wish for you, and for all of us, but I get the logic behind Plan B.

[Daisycat]

That’s definitely my wise for everyone here and people not here suffering with different things.


Hope for the best but prepare for the worst was always my motto. I think it fits with this.

[pennstater]

Hope for the best but prepare for the worst was always my motto. I think it fits with this.

So happy to see this. This is what many have been trying to say. You can go about living life, do what you can to prepare for what ifs, but stay optimistic for the best. Easier said than done, and different challenges and times, it may be a struggle to do this. You may think that many on here are happy all the time, but there are ups and downs for all of us. I guess though, that trying to help sometimes seems like constant cheering.

Many on here have suffered thru depression and anxiety. You recognize this in yourself. I think that is why your posts have touched many. It is hard to make any decisions and see any future when overwhelmed with grief. And many were hoping to help you deal with this grief. We've all cycled thru these emotions.

I personally believe that people with terminal and chronic illness should have the right to choose when enough is enough. One caveat: as long as the decision is not made when clinically depressed.

I just want to expand on something you touched on. You said that you see a lot of posts from people who had to stop working. That is true, but most of us didn't have the benefit of early diagnosis and starting a DMT right away. Damage was being done. That is a big plus in your column. And the people I know who are doing really well, aren't on the boards most of the time or even at all, because they are busy in life, working, taking classes, raising kids, coaching, mentoring, you name it.

Also plusses in your column: ON was your first relapse, which you fully recovered from, and went a year without another relapse, despite all the stress you are under. These also tend to point to a more favorable prognosis.

Your new neuro may say that since Copaxone working, and you remain clinically ok and MRIs didn't change, stay the course. So as long as your denial, which BTW is one stage of grief, includes continuing on medicine and MRIs, do what you need to. I just worry that you can't really stay in denial. I saw a new post from you based on Dr. Google again.

And yes, I had to give up a 29 year career that I felt defined part of my identity, it was 21 years after my first relapse and 12 years after diagnosis. And my first relapse involved cognitive issues, which I never fully recovered from, and ultimately led to my early exit from the work force. So 9 years not treated. And from what I read, the early years are where some of the damage is done that then results in subsequent progression.

As for your career, congrats on going for a new position. Is it possible that if it ever happened, and you feel not safe in surgery, that you could get into teaching your specialty? I know not the same, but just trying to think of related options, part of another back up plan.

Guess what I discovered after stopping work? I am more than my job. I miss it still, but do some volunteer work in the area of my field, which helps. I can also enjoy life more, as I have a better quality of life. My cognitive abilities have stabilized, per my last neuropsychologist testing. Some has actually improved, given fatigue level better. My brain hasn't "rotted out".

Finally, when my disability claims were first denied, I was upset. I told my husband that I would leave, as I would not be a burden on him, similar to how you feel. He then told me that if the shoe was reversed, that I wouldn't think of him as a burden, and reminded me that it is called love.

Sorry for the length, but so much was said since I last posted in here. I hope you have a great time with your friends this weekend. Sounds like long over due fun.

[MMMMS]

Once again you sound like me. I felt (I think maybe a lot of us felt) unprepared and unwilling to live a life with any kind of disability. Whenever the terror took over, I thought of that emergency escape plan. And is was, "OK, I can deal if I give myself a way out." The good news is that you've likely got decades to prepare for maybe, possibly needing a cane occasionally. I would bet dollars to doughnuts that some of your friends without MS will need a cane before your predicted disability date (15-20 years). You'll have friends without MS who are more disabled than you, even if you need a cane in 30 years. I have friends who've had multiple back surgeries, knee replacements, hip replacements, arthritis, etc. I was diadnosed in 2006 (first symptoms, in retrospect, in 1998), and of my close friends and family, I am the most able and active. Just not when there is 90% humidity. 🙂

Cog fog is a different thing. That we might be a little precocious with. But it's no Alzheimer's disease or mental illness. You're not going to forget what a fork is for. You're not going to mistake your father for a lamppost. 🙂

But your first question on humiliation. Again, just like me. 🙂 I didn't tell certain people who I thought would Google it and be mean about it. I knew that they would be mean, because they are cruel people. If they ever found out, I'll never know. People can think about lesions as they see fit, and that is their problem. I know what you mean - it's one thing to have lesions on your lungs (empathy from everyone) and lesions on your brain (people suddenly wonder if you're dumber than they thought). But most people think MS is a muscle disease anyway. And read through posts here about how we deal with other people's thinking about this. Most often people don't even believe us. They think we're not as affected by MS as we are at times. There are those who cut people with MS out of their circle as soon as they hear. But isn't MS, then, like the best polygraph test ever invented? Oh, you're a kind, good, empathetic person? Let's test that.🤣

I do not plan to buy my ticket to Switzerland yet. I just am just a member to where I can buy one when needed.

I hope I never need it but I will not live any day longer than I have to in my nightmare. I really wish this country had more sympathy for people but maybe one day.

[Daisycat]

Pennstater -
I am pretty sure I am going to always have anxiety and depression in the back of my mind. I am never going to be the same person I was I year ago. I mean I never thought I would be having to look into options to decide how to end things on my own terms… but until I have a relapse I plan to “not have this disease” (if that makes sense)



I agree with you 100% that people should be able to decide how and when to end the suffering from a terminal or chronic illness. There is no reason to make someone fly across the world for something they should be able to do at home with loved ones nearby.
I know a huge part of what is stressing me out is I haven’t had a real conversation with a dr about this at all. I have basically been told you have this and nothing else.



I also think the main reason I think I should leave my boyfriend is how we have different views on what will happen if things get bad. He thinks “we will find a way to deal”. I know I will be on a plane to deal in my own way. I don’t think it is fair to put him through that. If he can accept my choice that is one thing , but if he can’t I think it is fair to let him go now before putting him through that.



MMMS


You are correct. I am unwilling to live a life with any kind of disability. I do not think there is anything wrong with this , and I also do not think it is wrong for people to decide to continue to fight this thing. For me though , it would not be living to live like that. I hope you are right and I have decades before I have to go on my “final trip”, but having that option is very nice. Hopefully if I ever need it the USA will have progressed to allow people to die on their own terms when they have chronic or terminal illness.


Cog fog is what scares me the most because I would have to quit my job. I am not going to endanger an animal’s life because of that.


I had no idea what this disease even was before I was told I had it. I still sometimes think I fit more into the CIS area. (but according to my old neuro there is no such thing)

I also plan to tell my new neuro as far as I am concerned I don’t have this except when I come to see him. I will still take my medicine but besides that I am going to have to live as if I do not have this.

[marti]

Pennstater -
I am pretty sure I am going to always have anxiety and depression in the back of my mind. I am never going to be the same person I was I year ago. I mean I never thought I would be having to look into options to decide how to end things on my own terms… but until I have a relapse I plan to “not have this disease” (if that makes sense)



I agree with you 100% that people should be able to decide how and when to end the suffering from a terminal or chronic illness. There is no reason to make someone fly across the world for something they should be able to do at home with loved ones nearby.
I know a huge part of what is stressing me out is I haven’t had a real conversation with a dr about this at all. I have basically been told you have this and nothing else.



I also think the main reason I think I should leave my boyfriend is how we have different views on what will happen if things get bad. He thinks “we will find a way to deal”. I know I will be on a plane to deal in my own way. I don’t think it is fair to put him through that. If he can accept my choice that is one thing , but if he can’t I think it is fair to let him go now before putting him through that.



MMMS


You are correct. I am unwilling to live a life with any kind of disability. I do not think there is anything wrong with this , and I also do not think it is wrong for people to decide to continue to fight this thing. For me though , it would not be living to live like that. I hope you are right and I have decades before I have to go on my “final trip”, but having that option is very nice. Hopefully if I ever need it the USA will have progressed to allow people to die on their own terms when they have chronic or terminal illness.


Cog fog is what scares me the most because I would have to quit my job. I am not going to endanger an animal’s life because of that.


I had no idea what this disease even was before I was told I had it. I still sometimes think I fit more into the CIS area. (but according to my old neuro there is no such thing)

I also plan to tell my new neuro as far as I am concerned I don’t have this except when I come to see him. I will still take my medicine but besides that I am going to have to live as if I do not have this.

Daisy I've forgotten if you ever told us about your specific symptoms. If I remember you had a round of double vision. Are you having any other symptoms now? If you are your doctor should have given you meds to try to slow those down. It still sounds like in your mind you've gone from one symptom to "death is knocking at your door". I just hate for you to have this negative, give-up attitude at such a young age and with, what seems like, mild symptoms. Has your doctor given you some reason to believe you will progress quickly?

I'm not trying to fight you on this... it IS your life and everyone has a different course of MS. But I hate to see you just give in and give up. I do understand the anxiety. I've struggled big time with this for years. But I've also had a lot on my plate, other than my own illnesses. Your posts have been sounding a little better lately. Go out and have a good time, enjoy life. Those are positives that will probably help you in all aspects of your life. And I know that sometimes, it's very hard to be positive. So, keep doing what you're doing, but try not to look to the end. Your body might just surprise you.

[Temagami]

You are correct. I am unwilling to live a life with any kind of disability. (Your words)

Daisycat,

Depression and anxiety to the extreme are disabilities. You have already proven that you get up and live your life with depression and anxiety. With those under control, imagine how you could cope/manage a MS relapse with annoying but not debilitating symptoms. MS is partly due to having gotten a lousy genetic lottery ticket. That´s why the shame and humiliation piece don´t seem logical- to me.

Being female, relatively young on the MS scale and presenting with ON, you have the best indicators for not having severe progression. This hook is worth hanging your hope hat on.

[Daisycat]

My only symptom I ever had was double vision that lasted less than a week. My doctor has given me nothing. He spent 5 minutes with me at each appointment and that was it. I have a new neurologist that hopefully will answer my questions. And I am not giving up yet, but I am preparing for if/when this disease progresses to a point to where I do not see life as worth living.



I do not plan to be an a plane to Switzerland tomorrow but I do have that as my end game plan and that is something I will not compromise on. I am hoping it is a long time from now. I still need to go to Germany and go skydiving and bungee jumping…. (and like 30 other things)



And I am not really sure how I would cope with having to walk with a cane or having bad “cog fog”… both of those would take my job from me and my job is everything to me.