Is it possible to get over the humiliation of this

[Daisycat]

How do people get past the Shame of having this? I can’t even say the words when I talked to my old neurologist (just called it the curse) and I cried for 30 minutes after setting up my appointment with the new dr since I couldn’t say rotting brain to him.

I’m never going to be one of those people who tells everyone and goes to walks or anything but I’d like to be able to at least talk to my dr without crying. Saying the words makes it real to me and I’m still holding on to my .1 % hope that this was a misdiagnosis and I can still have somewhat of a future. .

I’ve accepted what my 5-10 year plan will be if I truly am cursed and am already looking to cross things of my bucket list this Friday with my piercings, tattoos, and unique hair colors. (Was to nervous before but nothing can hurt me as much as this hell). I just need advice on how to get over the unbearable amount of shame I have. .

I’m not looking for advice on how to accept this and be happy because as far as I’m concerned my life started to end last September 18th and ended completely September 21. I also need to decide if I can forgive my mom for telling her church buddies about this to “pray” for me. She had absolutely no right to share this information with anyone.

[oceanpride]

It’s really really tough Daisy cat. No one on here’s happy with having MS. It’s alright to feel that way. We all do. But we can’t just have a big pity party. It’s too big of a black hole to go down. We have to offer one another support to get through it. I feel for you. For myself. For all the others. We’re all going through it. The more advanced are my heroes. And their still here. Wanting to help. Your going to have to suck it up a little bit and carry on. Be a hero.

[pennstater]

Advice on how to get over the "shame" is difficult. Most people here don't view MS how you see it, and I don't mean to offend or upset you. Your perception of MS and associated symptoms are what contribute to your feelings of shame.

The only thing I can say is to reassure you that you did nothing to deserve this and it doesn't reflect on you as a person. You are no more responsible for your MS than a person with RA, ALS, and a host of other diseases. If a friend had MS, I am sure you wouldn't feel they needed to be ashamed. So remind yourself of that.

I am glad you have a plan to distract yourself the next few days. Hope you are happy with your piercings.

As for crying with your neuro, many of us have been there. I remember one appointment the first year when he had to read my prepared questions. I couldn't get them out writhout dissolving into sobbing tears.

When is your appointment with your new doc?

[Boudreaux]

Yeah, it sucks

But it's yours to deal with. It was given to you, like your hair color. Just like it was given to me and probably everyone else who will read this and we are not to blame, please don't self destruct.....you can and most likely will get better.

I am not a victim....neither are you.

You don't have to tell anyone, you don't have to go to walks or raise/donate to the MS Society or any of that. I'm pretty open and will tell anyone about it, you'd be suprised how many people don't even know what MS is much less think less of you for it.

[Daisycat]

I pretty much live alone in that black hole now.. just trying to find meaninglessness things to feel the void . And you aren’t offending me. My honest view of this curse is if I allow myself to live too long I will end up either with locked in syndrome or a blind crippled mess who doesn’t remember my name and has accidents on myself. . My new appointment isn’t until nov 8th since he fills up quick but I’m on a wait list. They called today but I was sleeping late so when I called back to late. . I may not have done anything to deserve this but I don’t understand why the universe allowed me to even exist since my life is going to end with me alone. And thanks I’m kinda nervous about my piercings on Friday... I’m thinking about just going for it and getting all 5 I want in my ear at once. She said 4 is the most she likes to do but I’m hoping I can convince her to do 5. I’m also getting my tattoo then so we will see.

[Ant1981]

MS

Honestly, I never knew wat MS EVEN WAS!!! Prior to diagnosis. Now after one year under my belt relapse free I’m hitting gym/weightlifting every chance I get, going 2 school and seeing a nice girl. Im actually happy! A true blessing in disguise.

[Daisycat]

I didn’t know what this was either. I thought it was what Michael j fox had. I didn’t even read about this when I googled what causes double vision. Since I thought that’s something other people get and not me. .

You might not think of yourself as a victim and I guess it’s not so much a victim as in why did I even have to be Born just to suffer. I’ve pretty much stopped talking to all my friends because we have nothing in common now. .

And ant1981 sounds like we were pretty much diagnosed at the same time. This Friday is the anniversary of the worst day of my life. I’m glad you are truly happy. I’m also glad I got to know happiness up until 821 pm September 21 2017. I hope everything works out for you. .

I really just want to know how to survive these next 5-10 years. I just wish this curse wasn’t so lonely. If I could get over this Shame and humiliation I’d consider talking to someone since 5-10 years is a long time to live feeling like your heart has been ripped from your body.

[Tawanda]

Humiliated? Ashamed? This is where you lost me, Daisycat, but as for P.O.ed, bitter, and scared? I can relate to that.

I can also relate to you not wanting your Mom blabbing about your condition. I had a similar experience. My SIL, who had MS, saw my old college roommate in Michigan and immediately told her about my MS. This meant all the friends I went to college with knew too!

Not that I am ashamed of my MS or that I even try to hide it, but it was my business who I wanted to tell, and when I wanted to tell. I was still in the process of wrapping my own head around my new diagnosis (kind of where you are right now) and at the time, it gave me a small bit of comfort to know that there was this small subset of people, who were my world at one time, who didn't know I had MS! There was no Facebrag at the time, either, just my SIL and her big mouth! This little gang in Michigan knew me when I was healthy and bullet-proof. I wanted to remain forever young in their minds anyway.

BTW, I have also noticed that you seem to think dementia-like symptoms are part of MS. You write things like one day you'll wake up and not remember your name (or maybe why you got those tatoos, LOL!)...MS probably won't rob you of your memories, or make you senile, but you can check with your doctor. I've never heard of this. Maybe you can at least scratch this one off your worry list.

[Daisycat]

Bitter I can relate to. Scared I could until I made my 5-10 year plan assuming I am not misdiagnosed. And yes this is humiliating. If I told people at work about this they probably wouldn’t even trust me to hold an animal since Goggling this all you see is how the mind goes and the person isn’t “right” anymore.
I am so sorry your SIL blabbed. Thankfully as far as I know I don’t know any of her religious friends so its just my fear of meeting one of them at work and them asking “oh how is $GGF” If someone ended up telling all my coworkers I would have to leave that day and file for disability. There is NO way I could work with people watching my every move. That is my fear with her telling her religious friends.
From what my dr right now (Google) has told me is that this thing will make you think slower and not able to remember as much. It might not make me as bad as if you had dementia but it will still cause mental/cognitive impairment. I was a complete nerd in school and made sure I had a 4.0. I would have graduated with a perfect 4.0 except when I was 18 I though drinking was better than classes so I had two Ds on my record that I couldn’t get rid of even after retaking the class. EVERYTIME I forget something now I think it is due to this.

I’m over the wanting to be happy. That died along with my future on September 21 2017. I guess my neurologist has probably seen everything so even if he does think I am all the things I think he will I won’t be alone. My fear now is my MRI will start to show signs before I am ready for my 5-10 year plan. I want to be here for my animals and finish my bucket list. But some people just don’t get the life they want no matter how unfair it is I guess.

[Jules A]

My honest view of this curse is if I allow myself to live too long I will end up either with locked in syndrome or a blind crippled mess who doesn’t remember my name and has accidents on myself.

Yeah mine is along these lines also however in the meantime I'm making hay while the sun is shining. Regardless of MS or not a majority of people will end up like this or with cancer if they live long enough. I have had way more excellent years than I ever imagined at my diagnosis so I am glad I'm still pushing forward.

Your current mindset is likely causing you more distress than is the reality. A good therapist could help you start sorting out the kitty from the litter.

https://www.psychologytoday.com/us/b...omous-thinking

https://psychcentral.com/lib/what-is-catastrophizing/

[jkforrest]

Daisycat get a hold on yourself girl.

First of all. There is nothing to be ashamed of period. Please explain in DETAIL why you should feel ashamed please as I truly don't understand that view and wish to help. I've had it since 2000 and when I found out I was relieved cause I thought I was going crazy. Don't know why I didn't think of MS cause my mother and two of my three sisters have it in varying degrees.

As far as the rest of your life it is a choice to make it what you choose to as best you can. I get that some folks cry and are upset. I'm not a part of that group just because all the rest of the crap that has been thrown my way by the universe. It is just another reason to show them you can't break me. Yeah there are different things that at times are an issue but folks that don't have MS have their issues too right? I sure wouldn't trade for cancer or to be a person with severe burns or lose a limb.

Do your bucket list as best you can. IF and *IF* is the question here. There is not a definite guarantee how any of us will progress or how fast that I am aware of at this point. Anybody can feel free to enlighten me. However just so you know I have pierced ears in several locations. One tat I got at 58 and I'll be 71 tomorrow. In a couple of weeks, I have to have two more nerve blocks two weeks apart to verify for ins. company that it is the correct location in order to have the nerves burned on the other side of my back to hopefully help with the chronic back pain I've had for 33 plus yrs. I personally find this more difficult to deal with plus numerous other stuff like the abuse from childhood.

My hair is currently fuschia. Had it white teal and amethyst. Also black mowhawk with sides cut zig zag. Yeah I know crazy for a 70 yr. BTW the last time I had the nerves burned off on one side of the spine the next day I fell at the theater and broke two ribs (now that I would advise not to do for sure)!!!!

My point is this life is what you or anyone makes of it. I do feel shame that due to all the rx I have to take my teeth are not doing well. I have had to have several pulled and am waiting to have two partials put in. In the meantime. A chunk/hole fell out between my two front teeth. NOW THAT makes me feel shame (however I believe that is due to vanity which I prefer not to admit). Two things in life about a person's appearance to me is their teeth and their fingernails being clean. Not what disease weight hair color etc etc bothers me. However, that is just me. We all have things that bug us.

There is no reason for you to feel shame because you developed this. As far as being in the dumps over it please reach out to folks here or contact your local MS chapter and find a buddy you can talk to about this. Perhaps a therapist could help you figure out how to be able to accept it better. Please know there are those of us that do not feel like our lives are over because we got the diagnosis. Do we like it no not at all. Does it limit us sometimes yes and to some degree some of us more than others.

I sincerely hope I have not hurt your feelings because you are entitled to your feelings whatever they may be. I am just trying to point out that none of us get out of this life without some crud to deal with. Some of us "seem" to have nothing to bother us.

Remember when you said someone else shared you have MS? Lots of us have times when it's the invisible disease (meaning unless you share no one knows). This is the part that is the toughest for me. Even with all my back issues I don't use the handicapped spots and save them for others that have only one leg etc. But the days that the MS fatigue hits (which you CAN'T see) is crushing me I do take the handicapped spot and no one but me knows I have the fatigue or MS at all. I guess if they see me they think where is her handicap between her ears cause there is nothing wrong with her. Well yeah, there is a list of things you just can SEE them. lol

Please try to remember we are all here for you and are willing to listen and will try to help when we can. I actually came here to vent about myself regarding a different issue but saw your post and decided you needed the attention first. So thank you for helping me to try to help you. I am hoping this was of some value as to the way I deal with the lovely diagnosis of MS.

[KoKo]

Yeah mine is along these lines also however in the meantime I'm making hay while the sun is shining. Regardless of MS or not a majority of people will end up like this or with cancer if they live long enough. I have had way more excellent years than I ever imagined at my diagnosis so I am glad I'm still pushing forward.

Your current mindset is likely causing you more distress than is the reality. A good therapist could help you start sorting out the kitty from the litter.

https://www.psychologytoday.com/us/b...omous-thinking

https://psychcentral.com/lib/what-is-catastrophizing/

Thanks Jules, for the article on catastrophizing (big word).

I know that I have fallen into that mindset on occasion.

It makes for a miserable time, so I try not to stay in it for long.

Therapy, in my earlier years after dx, has helped me with this.

Daisycat, hopefully you are making use of the support and feedback you are getting. We're rooting for you!

Take Care

[Tawanda]

[FONT=&quot]
From what my dr right now (Google) has told me is that this thing will make you think slower and not able to remember as much. It might not make me as bad as if you had dementia but it will still cause mental/cognitive impairment.

I have heard this condition referred to as "cog fog". I feel like I have this...it is like a combination of fatigue and being too preoccupied with worries. I am working on it. Having MS and bring a fairly happy person are not mutually exclusive.

[Canary54]

Daisycat: Would you feel humiliated if you had diabetes or congestive heart failure? MS is a disease that we acquired through no fault of our own. I've read many of your posts and want to recognize that you are entitled to feel what you feel. I didn't cry at my diagnosis 12 years ago; I was glad it was "only" MS and not a brain tumor! Even knowing what I do about MS today, I'm still glad it wasn't a brain tumor!

Many of us can share our personal journey with MS, but the only journey that really matters is YOUR journey. After what was most likely my first MS exacerbation in 1977 at the age of 23...….I had 29 years of good health, raising four children, surviving a divorce and the tragic death of my second husband when he was only 28. Until a horrible exacerbation last November, I worked full time for 40 years, often 10-12 hours a day.

I applaud you for tackling your bucket list now. MS or not, none of us are guaranteed tomorrow. Finding someone to talk to about your feelings could benefit you greatly. After my husband died, I spent one hour, three times a week, for three weeks sobbing in a therapist's office before I could even begin to talk about my feelings. But life did get better.

Life can be good, despite the obstacles to be faced, if we make the choice to live. Please be good to yourself......you deserve all the positive things life can bring you!

[headrift]

I really just want to know how to survive these next 5-10 years. I just wish this curse wasn’t so lonely. If I could get over this Shame and humiliation I’d consider talking to someone since 5-10 years is a long time to live feeling like your heart has been ripped from your body.

Hey again Daisy. Glad you came back... I don't think you're at a point to deal with alone. Not that you're weak or anything, just that you might be making it harder on yourself than you need to make it.

If you haven't looked at them yet, there are five grief stages everyone goes through. It sounds like you've made it through stage one already if you've learned that this is something real that's not going away.

I'd say that you're now in the "bargaining" phase where you try to find ways to explain to yourself what you've recently admitted to yourself... reasons to carry on "if" or reasons to carry on "until".

You'll get angry next... maybe even very angry. That's where you start asking "why".

You'll get depressed after that when you learn that there are not real good answers for why you (or any of us) have this.

Once you deal with that you'll have truly accepted that you have this disease. Not saying that you'll be all wonderful with everything about MS, just saying that you will have gone through the stages to take the first of many steps in the course of this disease.

Stop into the chat if and when you get there or want it. We'd be happy to talk, listen, or anything needed. You're strong. You came back.