questions and how do people deal with this?

[KoKo]

Moderator: Has this thread run it's course?

It may have.

Keep in mind that although the OP may or may not have been helped here, there are thousands of persons with MS (from all over the world) that come here to read the threads.

Take heart in knowing that the great feedback that has been so generously shared here has most likely been a blessing to many persons with MS. Thanks to everyone.

Take Care

[sarabeach123]

I hate myself because I am worthless and have a rotting brain. I have no future and should have never existed.

Daisy - it's clear the advice and support given here aren't going to help you until you choose to help yourself. You are going through an extremely difficult time and all of the advice given here is way too much for you to digest or attempt to put into place right now. Right now you need to take care of yourself emotionally by seeking counseling.

When you are in a better place emotionally, this board has tons of advice on all kinds of things, MS related and not, but right now you just need someone to talk to. And it is usually best to talk to a professional. Please get help immediately. Or reach out to someone you trust and tell them you need their help to find you someone you can talk to.

And then let us know - we'll all be so happy to hear that you've taken that step to help yourself!

[Seasha]

It may have.

Keep in mind that although the OP may or may not have been helped here, there are thousands of persons with MS (from all over the world) that come here to read the threads.

Take heart in knowing that the great feedback that has been so generously shared here has most likely been a blessing to many persons with MS. Thanks to everyone.

Take Care

Agreed!! I am so grateful for the outpouring of support from everyone here This is who we are - patients helping patients! I am so encouraged to read everyone's replies and agree that it is helping countless others. I've said it before, but it warrants repeating that we are all warriors - courageous warriors fighting this battle we call MS. I think most of us realize that MS does not define our inner being and we have taken the proverbial "lemons" to make the most of what we have been given and we are stronger for it.

[Daisycat]

Daisy,

I think that you should add me to the list of people you hate.

Yes, I have MS but I have come to look at it as an opportunity, not the opportunity I expected in life but still I have a chance to do something. Help someone somehow, much like MSW responders always try to do. No success here though.

You should seek professional help as previously suggested.

Jer

Moderator: Has this thread run it's course?

How can you look at this as an opportunity? All I can see this is is all the things in my life that are now wasted. And for the thread... I was hoping to find some way to not be so hopeless but I realize that I don't want to accept this curse. I WILL find a different diagnosis (one that doesn't involve a future as a blind cripple). I am going to work on a list of things that it could be so I know what tests to ask for. I REFUSE to accept this curse.

[trevvian]

Agreed!! I am so grateful for the outpouring of support from everyone here This is who we are - patients helping patients! I am so encouraged to read everyone's replies and agree that it is helping countless others. I've said it before, but it warrants repeating that we are all warriors - courageous warriors fighting this battle we call MS. I think most of us realize that MS does not define our inner being and we have taken the proverbial "lemons" to make the most of what we have been given and we are stronger for it.

YES!!! I spent hours lurking here after my diagnosis, especially when I was freaking out, wanting SOMEONE to explain exactly what I could expect over the course of this disease.

I guess the answer I found was, "Everything. Anything. And nothing."

The first year was hard. The second year was better. Now I've reached acceptance. I still go through grief cyles, particularly with each flare, but this group has taught me to "EXPECT anything, PREPARE for everything, and GIVE UP on nothing."

So thanks.

[Jules A]

So, five years in... here's how MS has affected me:

• I've had 6 or 7 MRIs
• I had neuropsych cognitive testing done to establish a baseline, so if I ever have to cite cognitive issues for LTD, I can prove my starting point
• I had PT for 6 weeks to recover from some gait issues
• I take 3 new meds
• I save a LOT more money now...just in case I need it some day
• I have different parameters for assessing the risk involved in major life changes

Here's what MS hasn't impacted:

• I got laid off...nothing to do with MS
• I found another job with a 20% pay increase
• I bought a new car
• I refinanced my house
• I took up new hobbies, like fostering cats
• I paid off all my debts (there weren't many)
• I started a taxable investment account
• I joined some networking groups & did some continuing ed

I love reading your post especially the mental picture of your 80s garb for the neuro appointment! Your impacted vs didn't impact list is excellent and would be a nice topic for its own thread.

I posted some time back about a bucket list which I started after googling the term to see what people put on a bucket list. After searching I also started a bucket check list of things I had already accomplished. The bucket check list is even more important and uplifting to me. There were so many things that I didn't even consider special and that I had already accomplished that were listed on other people's bucket lists I felt it was worth recognizing. Regardless of what tomorrow brings looking at the things I have experienced makes me appreciate all the living I have already done.

[MMMMS]

Daistcat, I've been responding to your posts, because you sound so much like me. I also hate stays in the hospital. I think you are probably a very independent person who doesn't like feeling vulnerable. Am I right on that?

Learning to accept being less than 100% is difficult. It's what they call the "new normal". It's a loss, like any other loss. When my husband had cancer, I was so unhappy without knowing why. His cancer was handled nicely, and he was cured. But, because he was older and the kind of cancer he had, he was never the same. Once I realized that I was unhappy that he wasn't back to "normal", I relaxed and accepted the new normal and counted my blessings that I was one of the lucky wives who still had a husband. I don't know why I didn't seek help from anyone, even others with family members who had cancer. But after I figured it out, a friend whose son had had cancer and survived told me that that is exactly what the family therapists at the hospital told them early on - that there would be a new normal to live with. They would never again go through life oblivious to how fragile life truly is. They would never again have a kid who was as healthy as other kids.

I probably should have talked to someone. My husband had cancer, my father passed away, and I was diagnosed with MS. I would have gone from a king of mourning to acceptance a lot sooner, maybe.

Still, like you, I hope that something else will be found. When I feel great, which is most of the time, I figure the doctors were wrong. 🙂 You will always wonder if this feeling, symptom, twinge is MS-related. That's normal.

My mother died when I was young, so I never had the luxury of what I consider prolonged childhood - teens and adults who have never experienced the death of a parent. They strike me as ridiculously naive about life. And when they fall apart as adults when a parent dies, saying things like they don't know how they will function without their mother (and they are adults themselves), I could throttle them. I'm actually disgusted by that reaction. (Full disclosure there.) 🤣How can they be so stupid about life at 50+ years. But that's because I've lived with this for so long, and their ignorance irritates like sandpaper. So, I get that you are hating all the ignorant healthy people who gave no idea what it's like to be diagnosed with a chronic condition. But they have no way of knowing. Their child-like state is super annoying to those of us who were forced to grow up (face health problems) earlier than most.

I really do get it. In a society that exhalts fitness, aggressiveness in business, and all things powerful, it's a blow to wonder if you might end up less physically fit.

What will be, will be. But there are treatment options now that weren't available even a few years ago, and MS is definitely not what it was years ago. In a way, we're all unwilling pioneers. And there isn't anyone on this planet who is stronger (mentally & physically), more of a warrior, more in touch with what is really important about being human than someone who deals with things like this. Some people are born with these challenges. Think of all the little kids who look at us and think we've been living like clueless infants for decades before diagnosis.

I remember a true story about a teen who was diagnosed with cancer that would eventually kill her. She became pregnant, and her mother lamented that she was too young. It was her grandmother who knew more. She said, "She's older than all of us."

I really do get your anger at all of the people who get to live in ignorance longer than us. But don't envy anyone. There are plenty of people with pancreatic cancer, ALS, or spinal cord injuries who would trade places with us any day. Possibly they see us "ignorant children" and we might annoy them to no end with complaints of what might happen in the future.

All of our worries and complaints are normal and justified. Live for the blessings, whatever they are.

I get that people here and being supportive and it’s not that I’m not listening... it’s just that I’m realizing more and more I don’t want a life with this curse. I don’t want an increased chance of being a cripple, I don’t want to be on disability, and I sure as @$@) don’t want to ever have to stay another night in a hospital. I’m just realizing nothing is going to change how I feel. My neurologist being wrong is the only thing that’ll ever give me hope.

[Daisycat]

You are right that I am very independent and staying in the prison/hospital was horrible. The staff treated me like dirt. If I ever treated a patient or client as bad as they treated me I would be fired. I don’t know how I can accept my “new normal” because for me it is everything I do not want in life. (or it could be one day).

And I am like you with thinking ANYTHING that happens is related to this curse. (can’t type the words… so I say curse). My ankle hurt the other morning and I was sure I was going to be paralyzed in that leg by noon. I have a headache and I am sure I am going to have something bad happen.



It is a complete blow to me that everything I enjoy and have worked for might be taken from me one day no matter what I do. I could follow the healthiest diet , work out every day , take any medicine needed , talk to a therapist , and still wind up a paralyzed and blind person. The not knowing is the hardest part for me. I feel like any second a new symptom could show up out of nowhere. My double vision came on suddenly with no warning. I was just standing there with a patient and suddenly I was seeing double.

When the hospital told me I had this they basically said “you have blah blah” and left me alone in my room. I spent the entire night Dr googling since I had no information on anything. I think the way the diagnosis was handled is part of why I am having such a hard time. No one told me anything the entire time I was in that hole.


I know there are people who have it worse than I do , but that doesn’t stop my anger and jealousy at people who are healthy and get to live out their life and die peacefully in their sleep. I had everything planned and now instead of traveling/rescuing dogs when I retire I have to wonder if I’ll be alive , be able to see , be able to walk, know my own name , etc.


But on the good news side … the lump in my breast was a cyst so at least I have that.

[MyGirlsMom]

Hello Daisycat,

The projections you make are not valid because of the way you are feeling.

We all go through difficult periods in our lives, sometimes extremely difficult times, whether we have MS, or not.

Life is a terminal disease. We all get sick and die from one thing or another; there are no exceptions.

In the end, the sun explodes and we all vaporize. That is our collective future; it is absolute and it will happen someday.

You said there is a good chance you will be disabled one day and that’s not living.
I don’t have MS but there’s a good chance I will be in a nursing home someday (I have no children to help me in old age) but I don’t resign myself to it. Quite the opposite.

I do everything I can to be healthy and stay healthy for as long as possible.

Why surrender when you can fight and live a great life while you have one?

I have 11 brothers and sisters and I am probably in better health than any. Why? Because I am more motivated toward good health knowing there may be no one to help me if I am unable. I watch my diet, I exercise, I study, more diligently; I don’t want somebody having to care of me because I neglected myself.

Daisycat, you are projecting bad outcomes without a key consideration… what are you going to do, how are you going to live, to alter that outcome?

Are you going to give in to the same temptations we all have… the temptation to surrender our lives to the fate each of us project on our worst days?

No, I don’t think so!

You are here searching for answers. You have already taken the first courageous step toward achieving a better, more wholesome, richer, fuller, more meaningful life. You have already begun collecting the thoughts and experiences of others to assist you and give you direction.

I am very optimistic for your life! There are people you don’t even know dying to meet you and wanting to know you. People who need you and want you. Someone said that the mark of rank in nature is capacity for pain and the anguish of the singer makes the sweetest the strain. The very thing challenging you the most is what will become most useful in alleviating the pain of others. The world needs you, Daisycat. The world needs you functioning as a whole, complete person. The steps you are taking and the choices you are making are leading you in the right direction to successfully emerge from this present thicket, so be encouraged.

You are a stunning, beautiful, and talented person.

When the forces of life oppress us so much that we cannot make big decisions we do the next best thing… we make small ones and look for victory in them. Overtime, making repeated, numerous small good decisions has a compounding effect… like adding weights to a balance coming down in our favor.

Daisycat, keep adding weights, continue making good small decisions. You know the way in your heart already… just keep walking it out. Do things good and wholesome and healthy; the things you already know.

Take it one step, one decision at a time. Don’t worry about the big picture right now; you have it all wrong anyway. It is going to be far, far better than you have imagined during your worst fears. Your projections were based on despondent feelings, not on the life you will actually experience.

The life you will have is an unknown. It is still being shaped and formed. You have the biggest part in that process.

Your life can become more than what you dreamed on your best days. But not by accident. It will take purpose, resolve, and effort day by day by day. That is the work of life we are all engaged with. It is the same endeavor for all of us. We all desire to add small victories each day until they become something huge and life becomes the joy we are meant to know. We all have failures; sure we do. We all get weak. Don’t expect perfection. Expect to fail sometimes but keep going anyway because there are victories coming, also. We have victorious days, too. So will you! Plus, the plain and simple truth is people you haven’t even met yet, need you. Persist for those who need you, Daisycat.

You are going to come through this period just fine. You have already begun making the right steps. Your mind will clear and you will see the next step to take. Avoid trying to project too far in advance. At night, headlights only project so far, we can’t see everything but we keep driving. Even though we can’t see everything we see far enough to keep going safely and we do get there.

Thank you for sharing.

Honestly, I marvel at how beautiful you really are already.

Thank you, dear, for sharing!

Myoak, that was absolutely beautiful! I haven’t been feeling well and your words today really and truly helped me. Thank you so very much!! Warmly, MGM

[Myoak]

MGM, you are very welcome! Thank you, dear lady, for your gracious response!

[Myoak]

Daisycat,

Think about how your life will be if you don’t break this pattern.

Let go of the idea that you are genetically defective because we all are. The human genome contains about 20,000 genes that encode proteins, or about 1.2% of the total genome, the other 98.8% is mostly trash. We are all genetically defective so let’s move on from that idea only some of us are genetically defective; we all are.

Move on... but how, in a practical sense?

By adding experiences to your life so at the end, your life will be lived, not dreamed.

Start building your happiness; nobody is going to do that for you, no one can do that for you.

Sometimes it takes a violent effort of will to change our direction or condition.

Your soul is hurt; not dead.

Connect with it again.

May I share a true story?

Years ago, decades ago, a man named Arthur visited a prosperous South African diamond mine. The workers hauled baskets of dirt and mud by hand up a very steep grade at an open pit mine. They worked long hours like slaves for little pay.

Arthur was invited to address a gathering of mine owners and spouses. He shocked them by exclaiming, “You are missing it! You are missing the real diamonds!”

Pointing through the window to the workers outside, he said, “There, those are the real diamonds, how do you value them? They are the real diamonds!”

Are you missing it, Daisy, are you missing the truth here?

Literally, diamonds are nothing compared to you. Diamonds are trash compared to you.

You think you don’t deserve to be happy? Do you deserve eyes? Ears? Toes?

Nonsense, isn't it?

You deserve to be happy because you are alive; no other reason matters.

Not fake happiness, real happiness.

You deserve to be happy because you have life.

Don't miss it, girl.

You are the real diamond!

[Daisycat]

I cannot build happiness since I feel either nothing or like my heart has been ripped out of my chest. I can’t think about this curse without crying. Some days I don’t even want to leave my bed and only leave to take my dog out to pee. It devastates me that I might not be there to take care of her for her entire life.
I know part of my problem is I have no one in RL to talk to about this. These are the peple who know
1. Mom - can’t talk to her because it turns into a Jesus conversation and I have no time for that
2.Boyfriend – can’t talk to him 24/7 about how miserable I am since I am sure at some point he will take me up on my offer to bail.
3. An ex – coworker- can’t really talk to them anymore since they moved and I do not see them anymore. It would not be appropriate to call/text them all the time since they are married and their spouse isn’t exactly open to the idea of female friends.
4. Dad – it just makes him really sad and he has had enough sad things happen so I do not want to make it worse.

That is all and that is all it will ever be. I have accepted I am 100% alone in this world and because of this curse I will never really have anyone again. It might get lonely but it is better than the shame I will feel having people know I am defective. (and for the list above doctors do not count because Drs only care about money)
You say I deserve to be happy because I am alive but this isn’t living. My life ended September 2017.

[kittysmith]

You Have to Keep Going

Daisycat, I have thought about this post since last week. Just reading everyone's responses and helpful information. You seem very angry (and rightfully so). But, here are a few things that bother me.

1. Stop calling us "Cripples". That is very insulting. I struggle to walk with a cane some days, but it's walking none the less. I am not ashamed, at all, that I have to use a cane sometimes. I'm just thankful I can walk.

2. Stop calling it a "Curse". That is also insulting. I'm sorry you are having a hard time dealing with this. I am not trying to minimize what you have been through. But, this is hardly a curse.

3. Why you? Why not you? I remember my mother, right after my diagnosis saying, "Why does my daugher have to have this"? My answer to that is, "Why not me"?

Has anyone ever talked to you about where your lesions are? Mine are all in my brain, except for 1 on my cervical spine. Sometimes, the placement of your lesions determines your abilities. If you don't have any lesions on your cervical or thorasic spine, you probably don't have to worry about being in a wheelchair. I have had optic neuritis 4 times (common when your lesions are in your brain). It's caused a little damage, but nothing that keeps me from working or enjoying my life. RRMS, if you have to have MS, is a blessing compared to PPMS.

Everyone has a burden to bear. My son was diagnosed with Autism 3 weeks after my MS diagnosis (in 2008). My husband has had a tumor removed from his lung. My dad had scoliosis so bad he could not stand up straight. My MIL just died of breast cancer. My FIL has A-Fib. my best friend had thyroid cancer.You cannot go through life without expecting some difficult issue to arise. Life just doesn't work that way.

I am very sorry that your are having a rough time. I will send some positive vibes your way. Live life to the fullest, no matter what obstacles are in your way. This disease is not a death sentence. I hope you can find some peace in your life.

[Myoak]

It is perfectly okay to feel the way you do, Daisycat.

It is perfectly okay.

This diagnosis was devastating.

You are allowed to feel the way you do, my friend.

It must feel like your life has been smashed into a million pieces.

An antique can be chipped and be ruined. It doesn't have to be smashed to be ruined.

Not so humans. Smashed human beings are not ruined.

Human beings alone have the unique property and ability of becoming something more beautiful after they are broken to pieces than they ever were before.

I have such love in my heart for you. You don't have to change at all. I'm in love with the pieces.

Not in some stupid romantic way; that isn't what I mean at all. I mean at a deeper level where good thoughts become part of the gluing process, along with others, your family, your friends, your animals, and other loved ones who help you mend.

Perhaps not today, but someday you may want to begin on reconstruction of your life. We have all done that, my dear friend. We will assist you any way we can.

Keep one thing in mind, Daisycat. You are the diamond. Nothing on earth is as valuable as you. Nothing. You are the diamond.

[Daisycat]

I am extremely angry that my life has been taken from me. I had plans and a future and now I am nothing and have nothing. I am not going to stop calling this h3ll a curse because I CANNOT type out the other thing (its actual name). I would cry for an hour. I cry anytime I order my medicine, anytime I see my neurologist, or anytime I inject myself with the poison that is supposed to slow down the progression.


For me if I have to quit my job because I can’t walk I am a cripple. It is not meant to insult anyone it is just how I view myself and my future. And I ask the universe every single day why it hates me so much that I am forced to live in this h3ll. Most of my lesions are in my brain. I think 2 in my spine. I had to stop myself from reading the MRI report because I was spending hours googling lesion location and outcomes.
This thing has 100% taken away any enjoyment I have in life. Everyone does not have a burden to bear. There are plenty of perfectly healthy people out there who have a great life. If this is all life has to offer me I honestly wish I had never been born. The thought of suffering this much and probably more is devastating. I am still holding onto the .01 % chance that they were wrong and this was something as simple as a vitamin b deficiency. If that ends up a dead end I have no idea what I will do.

And yes this diagnosis was devastating. I had so many thing I was going to do with my life. Now my life is work , go home and take whatever OT C medicine I want that day of the week to numb the pain and watch Netflix until I pass out. My Netflix que has 183 things in it so I am not worried about running out and I have 5 different OTC meds I use plus my prescription anxiety meds. (Which I have actually been able to take less of without the HORRIBLE nightmare withdraw I went through back in April when I was “forced” to stop cold turkey for a month).