questions and how do people deal with this?

[kittysmith]

I tried.

I’m not trying to offend anyone and if someone can be happy with this curse good for them. I can’t and know I never will be. Each day hurts more than the one before (until I get home and get my meds) the thought of “living” like this and worse devastates me. If I could I would never leave my couch.

Daisycat, I wish you the best. I am stepping away from this thread.

Love and Peace to you.

Kittysmith

[Daisycat]

Kittysmith you did try but unless you can give me my life back and something to live for there really isn;t much you can do for me. Everyday I ask myself if all this curse will be is pain and worse pain everyday what is the point...

[Jules A]

I can’t think of many things worse than a disease that slowly cripples you and destroys your mind. I am having a hard time accepting it because it has taken my hope for the future and basically my life.

IDK it sounded like a few posts back you were railing about the incorrect diagnosis of a significant brain tumor as earth shattering to you so there's that.

What about ALS and Huntington's? Now to me while I agree 100% MS has the potential to be a miserable thief of a disease those two definitely have the potential to be imminently worse, imo.

Truth is regardless if we live long enough the likelihood we in a nursing home increase exponentially:

“A relatively small number (1.5 million) and percentage (3.4%) of the 65+ population in 2013 lived in institutional settings such as nursing homes (1.3 million). However, the percentage increases dramatically with age, ranging (in 2013) from 1% for persons 65-74 years to 3% for persons 75-84 years and 10% for persons 85+.”

http://www.aoa.acl.gov/aging_statist...14-profile.pdf

[Daisycat]

With a brain tumor as sad as it would be at least I would know when and how I would go. With this curse I get to spin the wheel of chance every day to see if it’ll be the day I’m paralyzed. Those two diseases are probably worse but like I said I can’t think of many things worse. I just am really wondering more and more every day that all life has to offer is me fighting tears all day until I can come home to take my otc stuff and watch Netflix what’s the point. This isn’t living... something I was doing earlier said something similar to next week is our one year anniversary. It just reminded me how one year ago I was preparing to start the application process for my certification and how I actually cared about things. Now I realize life is just a cruel joke making us think we can be happy. It just plays the joke on some people longer.

[Jules A]

This isn’t living... something I was doing earlier said something similar to next week is our one year anniversary. It just reminded me how one year ago I was preparing to start the application process for my certification and how I actually cared about things. Now I realize life is just a cruel joke making us think we can be happy. It just plays the joke on some people longer.

Daisycat "this isn't living" because you have tapped out early. From what I have read there is no reason at this time, other than perhaps your excessive self medication, that is causing you not to live life to its fullest. Exactly why can't you advance your degree? If at this point you are using MS as an excuse not to further your career, thats on you and its unfortunate.

I'm all for pulling the plug when the end is imminent but that ain't today for either of us. You are making excuses and hiding behind the fear of the what-ifs. We all get it however no one has any guarantees. Sure our health is absolutely more likely to hit the skids sooner than many so stop wasting precious time.

[hsmaldo]

Perspective

Daisycat, I am sorry that you have to go through this. I had double vision as my initial symptom and had to spend the night in the hospital. Scary thing for me is that I am already legally blind in one eye already and it was my "good" eye that had the paralyzed nerve. I spent the night crying on the phone with my mom, sitting watching the sunrise and wondering if I would ever SEE my girls grow up. So, I can relate to the fear of being blind. But it's not a reality--not now, maybe not EVER.

Someone once referred to the first year as the "lost year." I agree with that assessment. It was a tough year, wondering and waiting for the other shoe to drop.

So many others have already touched on so many things that you would most likely benefit from. I'm not going to reiterate any of it. I'm not sure why I am even responding actually, except that as someone said, people from all over the world come and read these threads and maybe this will help one of them.

Perspective is an amazing thing. How we see our lives and others are all based on what perspective we have and all our experiences help form that perspective.

Change your perspective and you can change your life. Don't believe it? Your perspective changed when you got your diagnosis of MS. It changed drastically. But if you really think about it, MS hasn't changed your life. Your PERSPECTIVE has changed your life.

MS hasn't crippled or disabled you--your emotional state has crippled and disabled you. And I'm very sorry to read how deep your negative emotional state is entrenched and how it's taken over your life to the point where you don't feel like it's worth anything and you're only sticking around for your dad and your cat.

As I said, I'm not going to repeat everything that everyone else has already mentioned on how to work on changing your perspective.

For anyone else reading this post, I want to encourage you. MS is NOT a life sentence. Disability is not at the end of the road for everyone. Early use of DMDs is preventing future disability.

These are ways my life has changed in the last 5 years since my diagnosis:

I get more MRIs--this is annoying, but tolerable.
I take Tecfidera--after 5 years, this is habit.
I started an anti-depressant which has helped keep my perspective on track on reality.
I've learned when to push myself and when to take a nap.
I have met some amazing people that I otherwise wouldn't have met.
I passed a promotional exam and came out #1 on the list above 8 other people and am currently being considered for a supervisory position.
I became a professional photographer--this is a side job (sometimes 12 hour days on my feet in the heat). I am actually working MORE now than when I was diagnosed.
I still play volleyball.
I celebrated my girls birthdays, my wedding anniversary, numerous holidays.

Basically, I live my life on my terms. Is my life perfect? Absolutely not. But NOBODY'S is. EVERYONE--even those who are "healthy" have issues, problems, heartbreak and loss. But we can all decide on how we will react to those things. I've decided that I will live my life to the absolute fullest and if something happens, then I will shift my perspective to a new normal. But I refuse to wait for the other shoe to drop. If a flare comes up, I'll deal with it at that point in time. Not waste years of my life waiting for it to possibly happen.

I hope you are able to shift your perspective, with the help of others, meds, or some other method so that you can see past this diagnosis and see the reality of what your current life is--a boyfriend who loves you and a job that is fulfilling and that you obviously love and are good at.

All the best to you

[Mamabug]

Daisycat --

...
Someone once referred to the first year as the "lost year." I agree with that assessment. It was a tough year, wondering and waiting for the other shoe to drop.
...
Perspective is an amazing thing. How we see our lives and others are all based on what perspective we have and all our experiences help form that perspective.

Change your perspective and you can change your life... MS hasn't crippled or disabled you--your emotional state has crippled and disabled you. And I'm very sorry to read how deep your negative emotional state is entrenched and how it's taken over your life to the point where you don't feel like it's worth anything and you're only sticking around for your dad and your cat.

As I said, I'm not going to repeat everything that everyone else has already mentioned on how to work on changing your perspective.

...I hope you are able to shift your perspective, with the help of others, meds, or some other method so that you can see past this diagnosis and see the reality of what your current life is--a boyfriend who loves you and a job that is fulfilling and that you obviously love and are good at.

All the best to you

Hsmaldo makes some really good points; I've picked out a few of them.

Daisycat, you didn't choose to have MS, but you are choosing how to respond to it. It sounds like you have chosen to have a wasted year. It's up to you how much more time you decide to waste.

Grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

This prayer is worth saying daily, when you get up, and perhaps again, when you go to bed. It doesn't need to be to God; it can be to a higher power, however you choose to define that.

You've made some positive steps. But you seem to wish to let your perspective entrench you enough to disallow subsequent positive steps. You can change your perspective. I pray that you will have the wisdom, the courage and the serenity that will move you forward. Saying this prayer daily can be one easy change you could start with.

[ladybug162]

Daisycat, I am sorry that you have to go through this. I had double vision as my initial symptom and had to spend the night in the hospital. Scary thing for me is that I am already legally blind in one eye already and it was my "good" eye that had the paralyzed nerve. I spent the night crying on the phone with my mom, sitting watching the sunrise and wondering if I would ever SEE my girls grow up. So, I can relate to the fear of being blind. But it's not a reality--not now, maybe not EVER.

Someone once referred to the first year as the "lost year." I agree with that assessment. It was a tough year, wondering and waiting for the other shoe to drop.

So many others have already touched on so many things that you would most likely benefit from. I'm not going to reiterate any of it. I'm not sure why I am even responding actually, except that as someone said, people from all over the world come and read these threads and maybe this will help one of them.

Perspective is an amazing thing. How we see our lives and others are all based on what perspective we have and all our experiences help form that perspective.

Change your perspective and you can change your life. Don't believe it? Your perspective changed when you got your diagnosis of MS. It changed drastically. But if you really think about it, MS hasn't changed your life. Your PERSPECTIVE has changed your life.

MS hasn't crippled or disabled you--your emotional state has crippled and disabled you. And I'm very sorry to read how deep your negative emotional state is entrenched and how it's taken over your life to the point where you don't feel like it's worth anything and you're only sticking around for your dad and your cat.

As I said, I'm not going to repeat everything that everyone else has already mentioned on how to work on changing your perspective.

For anyone else reading this post, I want to encourage you. MS is NOT a life sentence. Disability is not at the end of the road for everyone. Early use of DMDs is preventing future disability.

These are ways my life has changed in the last 5 years since my diagnosis:

I get more MRIs--this is annoying, but tolerable.
I take Tecfidera--after 5 years, this is habit.
I started an anti-depressant which has helped keep my perspective on track on reality.
I've learned when to push myself and when to take a nap.
I have met some amazing people that I otherwise wouldn't have met.
I passed a promotional exam and came out #1 on the list above 8 other people and am currently being considered for a supervisory position.
I became a professional photographer--this is a side job (sometimes 12 hour days on my feet in the heat). I am actually working MORE now than when I was diagnosed.
I still play volleyball.
I celebrated my girls birthdays, my wedding anniversary, numerous holidays.

Basically, I live my life on my terms. Is my life perfect? Absolutely not. But NOBODY'S is. EVERYONE--even those who are "healthy" have issues, problems, heartbreak and loss. But we can all decide on how we will react to those things. I've decided that I will live my life to the absolute fullest and if something happens, then I will shift my perspective to a new normal. But I refuse to wait for the other shoe to drop. If a flare comes up, I'll deal with it at that point in time. Not waste years of my life waiting for it to possibly happen.

I hope you are able to shift your perspective, with the help of others, meds, or some other method so that you can see past this diagnosis and see the reality of what your current life is--a boyfriend who loves you and a job that is fulfilling and that you obviously love and are good at.

All the best to you

This is such a great post. Thank you for posting. Sometimes I get a bit discouraged and this has definitely helped me.

[pennstater]

Hsmaldo - great post!

Posting one of my favorite quotes again, even though I posted multiple times lately, but it is all about perspective. The quote always reminds me I have a big role in how I live my life. Like everyone else, there are times I am down or frustrated, but eventually, get back to working on my reactions.

Dennis P. Kimbro - "Life is 10% what happens to us and 90% how we react to it."

[Daisycat]

Why should I try to advance my career? Normal people are more deserving... the universe has made it clear I don’t deserve anything. My fear is what if I can’t have the ability to pull the plug when it’s time and I’m stuck in a blind and disabled state for years. And I’m aware my boyfriend loves me but I feel like I am holding him back from a happy old age. I wanted to grow old with him not have him bathe me and carry me to bed because I can’t do it myself. I still love my job. I am just now leaving (5 hours late... 1 emergency surgery and one “routine “ that was weird. I started crying when I left because all I can think is how much I’ll miss it. I made myself a country pandora and I only listen to country one day every year. (The anniversary of my best friends death-she loved country... it makes me sadder but sometimes a really good cry helps).

Maybe it was being told I was dying of a fatal brain tumor and being let to think that for three days that started messing me up. Maybe if I had the correct diagnosis from the start it would be different. I was told I had the curse and the fatal brain tumor. It was a messed up situation that should have never happened and I truly hope that nurse was fired. I really do try to not be sad but I think of all the things in life I’m going to miss out on. I’ll never get to know the love of a new puppy because it’s not fair to that animal to get it when I might not be around to care for it. I’ll never get to go on a vacation again since if I have a flare out of town. At home I can at least cry in a corner since a hospital isn’t an option.

And having people here tell me my medicine I’m on is not good doesn’t help. Because of my job I cannot be immune compromised and my utter break down into a panic attack fear of hospitals kinda makes some of the others bad. Also I read some of the posts in the med section seems like hair loss is a major issue with the pills. I can’t do that because I can’t have people know. I’m honestly still going to hold on to my 1% hope it was one of the two things I found that can cause these symptoms. If I loss that I don’t know what I’ll do.

[Daisycat]

Hsmaldo - great post!

Posting one of my favorite quotes again, even though I posted multiple times lately, but it is all about perspective. The quote always reminds me I have a big role in how I live my life. Like everyone else, there are times I am down or frustrated, but eventually, get back to working on my reactions.

Dennis P. Kimbro - "Life is 10% what happens to us and 90% how we react to it."

I don’t agree with that quote... I’d say 50/50 tops... and my first night in the hospital I was told you have this curse it’ll usually cause some form of disability from blindness to needing a wheelchair. I spent the night honestly wondering if that’s all I had to look forward to what was the point. It was on discharge I was told I was dying of a brain tumor. Nothing like wishing you were dying, being told you are dying, being conflicted about how you feel, then finding out you don’t really have a brain tumor. My neurologist has never really told me anything about this hell. (I do plan to ask for a referral to a new one after my follow up mri if my dreams of this being wrong are crushed).

[Mamabug]

...My neurologist has never really told me anything about this hell. (I do plan to ask for a referral to a new one after my follow up mri...

Good idea. I sometimes felt like I knew more about some MS things than my first doc, who was a general neurologist.

I'd encourage you to look for an MS specialist. Neurologists need to keep up to date on all aspects of neurology. An MS specialist can just focus on MS. It took me fuve years to switch. I've been with my specialist for 10 years now and I'm so glad I did.

[Daisycat]

My neurologist Is a nice enough guy... he had no idea that nurse had told me I had a brain tumor. He’s just not a specialist. Well even worse she just said you have this follow up with your dr. I had to go home and google what it was. I didn’t think it was anything bad since she was so causal about it. I still hope she got fired because I made sure I went all the way to the assistant director of the hospital because that’s not the kind of thing you should be messing up... but back to my neurologist there is one I want to see about an hour away the problem is my anxiety about drs. I’ll need someone to drive me since I’ll either have a panic attack or start smoking again if I drive myself.

[Tawanda]

I don’t agree with that quote... I’d say 50/50 tops... and my first

Perhaps this quote is more relatable: To live is to suffer, to survive is to find some meaning in the suffering.
- Friedrich Nietzsche

[MyGirlsMom]

Daisycat, I am sorry that you have to go through this. I had double vision as my initial symptom and had to spend the night in the hospital. Scary thing for me is that I am already legally blind in one eye already and it was my "good" eye that had the paralyzed nerve. I spent the night crying on the phone with my mom, sitting watching the sunrise and wondering if I would ever SEE my girls grow up. So, I can relate to the fear of being blind. But it's not a reality--not now, maybe not EVER.

Someone once referred to the first year as the "lost year." I agree with that assessment. It was a tough year, wondering and waiting for the other shoe to drop.

So many others have already touched on so many things that you would most likely benefit from. I'm not going to reiterate any of it. I'm not sure why I am even responding actually, except that as someone said, people from all over the world come and read these threads and maybe this will help one of them.

Perspective is an amazing thing. How we see our lives and others are all based on what perspective we have and all our experiences help form that perspective.

Change your perspective and you can change your life. Don't believe it? Your perspective changed when you got your diagnosis of MS. It changed drastically. But if you really think about it, MS hasn't changed your life. Your PERSPECTIVE has changed your life.

MS hasn't crippled or disabled you--your emotional state has crippled and disabled you. And I'm very sorry to read how deep your negative emotional state is entrenched and how it's taken over your life to the point where you don't feel like it's worth anything and you're only sticking around for your dad and your cat.

As I said, I'm not going to repeat everything that everyone else has already mentioned on how to work on changing your perspective.

For anyone else reading this post, I want to encourage you. MS is NOT a life sentence. Disability is not at the end of the road for everyone. Early use of DMDs is preventing future disability.

These are ways my life has changed in the last 5 years since my diagnosis:

I get more MRIs--this is annoying, but tolerable.
I take Tecfidera--after 5 years, this is habit.
I started an anti-depressant which has helped keep my perspective on track on reality.
I've learned when to push myself and when to take a nap.
I have met some amazing people that I otherwise wouldn't have met.
I passed a promotional exam and came out #1 on the list above 8 other people and am currently being considered for a supervisory position.
I became a professional photographer--this is a side job (sometimes 12 hour days on my feet in the heat). I am actually working MORE now than when I was diagnosed.
I still play volleyball.
I celebrated my girls birthdays, my wedding anniversary, numerous holidays.

Basically, I live my life on my terms. Is my life perfect? Absolutely not. But NOBODY'S is. EVERYONE--even those who are "healthy" have issues, problems, heartbreak and loss. But we can all decide on how we will react to those things. I've decided that I will live my life to the absolute fullest and if something happens, then I will shift my perspective to a new normal. But I refuse to wait for the other shoe to drop. If a flare comes up, I'll deal with it at that point in time. Not waste years of my life waiting for it to possibly happen.

I hope you are able to shift your perspective, with the help of others, meds, or some other method so that you can see past this diagnosis and see the reality of what your current life is--a boyfriend who loves you and a job that is fulfilling and that you obviously love and are good at.

All the best to you

hsmaldo, thank you for that post as it especially spoke to me. My MS has been acting up, but with a recent blood test due to bladder problems, it may be something else with the potential to be a bad “something else”, worse than my MS. This evening I am very afraid for me and my family. As I lay here unable to sleep and reading MS World, I am going to work on changing my perspective as life is still the same and I can address that issue when I have the test results in a day or so. Thank you for posting that for Daisycat, but it truly benefited me! Thanks!!! Warmly, MGM