Is it possible to get over the humiliation of this

[headrift]

Ladybug I get what you are saying 100%. I am very depressed because of this. I just don’t care about much. It all seems so pointless. I’m not one who could commit suicide myself at home/unassisted and I also don’t want to die. But all Countries aren’t like thIs one and knowing I have options even if I never use them has been a huge comfort.

Sounds like you're still looking for a way to die, Daisycat. Found a best-case possibility yet?

[Daisycat]

I’ve already said I don’t want to die yet but I also don’t want to live a worst case scenario. I have three different scenarios planned and only time will tell which one. And I’m pretty sure the fact that my entire future was stolen from me almost a year ago is what decreased my quality of life.

[Temagami]

If hair loss possibility is keeping you from a more effective DMT, this may help: I take niacinamide and it counters the hair loss factor from Gilenya and from Ocrevus- dramatically.

The future you "lost" was not reality. With your current reality can you make plans that take into account the MS dx, but allow for joy, growth and novelty?

If you seek a therapist, please ask for one with experience in dealing with a disease like MS. While emotions are ephemeral, depressive states need intervention. I am glad that you are walking the pooch. Walks in nature are healing.

[pennstater]

And I am not negative... I am realistic. Some people get lucky enough to not have issues but since all I have is Dr google I am going by what I find there.

Please look at your last sentence. You have real people here, trying to tell you that the worst case scenarios you find on Google do not mean that will be your future. People are sharing actual experiences, but for some reason, you seem to want to trust Dr. Google more.

I know you want to feel better or you wouldn't be here. Right now, your MS is not disabling, but your depression is. Please get help for it. You have taken positive steps in getting a new neuro, working out and walking your dog. Keep it going.

[kittysmith]

Listen to Mamabug!

I read this about acceptance:



You, Daisycat, are simply wasting your energy and decreasing your quality of life by not accepting this. You're stuck.

Accepting it won't make it worse. It will give you the opportunity to work on the next step -- courage. It's time to move on. You are not benefiting from your choice. There is no upside to non-acceptance.

I'm still not sure what you are looking for from us. Like a previous poster said, I was glad it was just MS. I watched one of my coworkers die of ALS. It was a horrible way to go. Watched my MIL die of cancer just a few months ago. Believe me. You want MS over what I saw those two amazing humans go through.

If you want to be miserable, that is up to you. But, at some point, you have to stop asking the exact same question over and over. If we are all wrong, why keep asking what we think? I am just not understanding your purpose for asking basically the same thing? You don't seem to like anyone's answers. Maybe, at least, a "thank you" to those of us who are trying to help would go a long way.

I have been LIVING with this since 2008. I haven't missed any more than a week of work over flares. I haven't gone blind (have had ON 4 times). I have some cog fog. I just learned how to make lists to remember. I have been in the same job for 13 years. I have FMLA if I need it. I haven't been cursed, I'm not crippled, my brain has not rotted out of my head.

Find a hobby. Do it even if you don't feel like it. Begin a Grattitude Journal. Write 3 positive things that happended to you each day or 3 things you are thankful for. You may not think there is anything positive, but try it. It works. Also, maybe try to look at what some other posters are going through and give them helpful advice or just tell them you are thinking about them, that you've been where they are. Comfort them the way we have done for you.

Good Luck. Start living life.

[Daisycat]

Everything I want for my future isn’t possible with this disease. I don’t see the point in spending a year studying, doing 100 plus case studies, and some extremely hard technical skills when I don’t know if I’ll be able to work in a year. My job isn’t one where accommodations are easy. .

I’ll ask my new neurologist about different meds but my two main requirements that I can’t work around are no immune suppression (since I do sometimes see animals with zoonotic diseases) , and I need copay assistance. These meds are insanely expensive and I don’t see how anyone can afford 3000 plus a month. .

And I prefer no hospital stays since those places give me anxiety. They had to stop my mri half way through to give me more anxiety meds since I was shaking so much and couldn’t breathe. .

The sentence that gets me is “right now your .!5 isn’t disabling” I don’t ever want to live with it causing any issues. And like I said dr google is all I’ve had this past year. My old neurologist was worthless. .

And I have said general thank you to posters. Posting here helps me because I am 100% alone with this and at least here no one knows me in real life and I won’t be viewed different at work. .

I honestly can’t think of anything positive... only thing I have that I’m thankful for is I never have taken a vacation in 3 years and they are cutting our max hours we can carry over. So I am going to get lots of vacations over the next 6 months. Be nice if I could go somewhere but I can’t have a flare out of town since I’ll never spend another night in a prison (hospital) again. At home at least I’ll have my dog and cat and can try self treatment or just suck it up and deal. Not missing work for a hospital stay either. .

But I do appreciate everyone who posts here. I’m also of the mindset that if you disagree with how I feel don’t read my posts. I don’t think my life is going to be worth living if I progress to a certain point and I’m not going to look at how I can make adjustments to being unable to work, walk, see, think normal, control my bladder/bowels, or anything else this hell causes. .

I’m sorry if that offends people but I’m not changing my plans or view. I’ll never be happy and I’ll never accept this curse. I just want to get through the day without crying for hours and without wanting to slap pretty much anyone who can still have a future. I’m excited that I’ll be doing things I would have never done before. (Like skydiving- I always wanted to but was afraid my parachute wouldn’t open but now meh...). . Like

I’ve said before (and offended many people) I’m a complete atheist so the “afterlife” to me is just nothingness or coming back and getting a second chance. The thought of existence that lasts for eternity where I’m just reminded of everything I missed in life sounds horrible.

[Mamabug]

The shame comes from the fact that I feel like I will never be all the things I dreamed about and wanted for so long...
I honestly feel like I am defective and should not have ever been born...

This still seems illogical to me and makes no sense. Shame is not triggered by an illness. That is not what shame means. Shame is triggered by inappropriate behavior or something one did wrong.

If you are treating others badly, that would be something to be ashamed about. Perhaps you could be ashamed for treating yourself badly.

It is possible that the emotion you are trying to express is embarrassment or awkwardness, not shame or humiliation. If that is what you are experiencing, try to picture a reverse situation; you are probably judging yourself more harshly than others would judge you, or you would judge others.

I love your bucket list idea. Also, consider some of Kitty's suggestions: find a hobby, start a gratitude journal, etc.

[KoKo]

Hi Daisycat

You don't have to worry about offending other members with how you feel and what you think.

When members offer their ideas and suggestions that are worthwhile, and constructive, and beneficial ~ it doesn't mean that they are offended.

It just means they want to share the strategies that are working for them while living with MS.

Obviously, you are welcome to take them or leave them, as you wish.

Take Care

[Daisycat]

To me this curse is humiliating because people will look at me different no matter how much they try not to. Most people don’t know anything about this so all they will know is what google says. They’ll look at me as if I’m incompetent and look for ways to fire me (if higher ups know).

People here do have decent ideas if I was looking to be happy and accept this but I’m not going to be able to do either. I just want a way to keep going until the day comes when i know I need to make a choice before it’s to late.

I’m excited I’m knocking a lot off my bucket list tomorrow. The actual anniversary of when I found out my life was over. I’m getting a tattoo, highlighting my hair in a really cool color pattern, and getting my final 5 piercings I want on one of my ears. Once those heal I start on the other side.

I wish I could do more tomorrow but a lot require travel/ reservations/lots of luck/ or having my celebrities I want to meet magically coming into where I work. Although two of them do live about 1-2 hours from me so anything could happen. (Not a creeper it’s on their Facebook celebrity page)

** 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. **

[Mamabug]

To me this curse is humiliating because people will look at me different no matter how much they try not to. Most people don’t know anything about this so all they will know is what google says. They’ll look at me as if I’m incompetent and look for ways to fire me (if higher ups know).

Either your friends, acquaintances, co-workers and supervisors are more judgmental than mine are/were, or that is just your inaccurate perception. Most times, you will be harder on yourself than others will be on you.

I repeat, that is not humiliation or shame. It sounds like embarrassment.

I’m excited I’m knocking a lot off my bucket list tomorrow. The actual anniversary of when I found out my life was over. I’m getting a tattoo, highlighting my hair in a really cool color pattern, and getting my final 5 piercings I want on one of my ears. Once those heal I start on the other side.

This is exciting. Please continue to set goals (ie: bucket list). Setting goals and working towards them is one of your healthy responses to the changes in your life. It is one indication that, sometimes, you are showing the courage to change the things you can.

[Daisycat]

It is shame and humiliation. I am ashamed that I won't be able to do this I have been talking about for 4 years and was very excited about. I basically had to say I changed my mind because it sounded like to much work and it was causing me anxiety. I won't ever tell anyone else about this. I know how I feel the few people I do know pity me. I couldn't handle the everyone I know looking at me like that. And people should be hard on themselves to push us to be the best we can be. Sometimes life just slaps us down and lets us know we aren't as good as we though. And embarrassment is something that goes away. The humiliation of this will be here forever.

And I may have a different view on my bucket list tomorrow after I have stuck ( well had someone stick 5 needles through various parts of me ear.... but I am still excited)

And my dad said he will go skydiving with me so I don't have to go alone now. Everyone else I know is worried that something will go wrong.

[tl-tr3]

Life over?

The actual anniversary of when I found out my life was over.

My only advice to you at this point is --Choose Happiness--

Life is too short for the doom & gloom attitude.

My sister at the age of 17 walked out the door to go out with friends, & the car she was in was hit by a drunk driver. She suffered a traumatic brain injury. She never talked or walked again.

Obviously you believe strongly in what you are reading on the internet. But I bet if you look hard enough you can find the opposite views or statistic that say there is a good possibility you will not be disabled in 5,10,20 yrs or that you will not have cog fog & that the end of life will not be horrible.

I also spent alot of time on the internet after my diagnosis. But I realized after some time that I was missing out on life & enjoying it.

[Mamabug]

Daisycat -- We might have to agree to disagree. What you are experiencing is not shame or humiliation.

Might be disappointment. Might also be embarrassment. I've read about "perceived humiliation"; it could be that.

You can call your emotions shame and humiliation if you wish. But having an illness is simply not shameful, even if it results in changes in your abilities and plans. Rather, it is a sign of emotional health to be able to adapt our plans to new circumstances.

[pennstater]

Good luck tomorrow. I hope you relax and have fun.

When you really want to learn about MS, check out the NMSS, Rocky Mountain MS center, MSAA, or MSIF websites. Stay away from Dr. Google. You said before you know it isn't healthy for you. So spend the energy on websites that are truly educational.

When I was first diagnosed, I read an MS for dummies book. I also read a great book on the first year with MS, what to expect.

Prep for your neuro appointment. If it is MS, pick a few key questions and prioritize them. Let him know the diagnosis is overwhelming you, that you see no productive future, and anxiety is an issue. Ask him where you go from where you are at. Ask him how to get educated on MS. My first neurologist actually lent me a book.

As an FYI, most people don't treat me any differently, nor do they look at me with pity. I do get concerned questions when I may not be myself, but people follow my lead. I don't look for pity, so it is not offered.

Co-workers never treated me differently. They expected me to do my job. And everyone makes mistakes now and then. When I did, they never thought it was because of MS. I worried about it, but noone else did. If I do need help with something, I ask. Otherwise, people follow my lead. I actually had a few people tell me they learned alot about MS by my ability, not disability. Their view of MS was your view, they now know that is not the case for all.

[Daisycat]

I’m sorry about your sister. Losing someone like that sucks. My best friend was hit by a drunk driver and died instantly. Funny thing... I was supposed to be with her that night but I was sick. I always wonder what would have happened and now why didn’t it .

Most things I find online say even best case the person has some form of inpairement... why would I want that? .

You might not find shame and humiliation in this but I do. I feel ashamed that I’m even still working since any day could be the day my brain goes and I make a mistake. My dr I worked with all the time knew about this but he was transferred so now I have no one there to Look out for me. I’m humiliated that people are going to know my brain is dying and I’m not normal. .

I don’t see how some of you people tell everyone. I can’t tell my coworkers. My friend up there had a very mild stroke and people treated her like she was helpless and knew nothing the whole first week she was bad. They made fun of her for calling in with a 101 fever. (Well not all of them... the mean girls group).

My questions for my neurologist are obviously could this be anything else. What are my chances of never losing my vision, ability to walk, and my job. What do I do about a flare since hospitals = no chance in hell, and are there better drugs that meet my requirements


** 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. **