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  • bcavos
    I was diagnosed In December 2017. I am just now starting to accept this thing. Yet one thing I can not shake, is the realization of my mortality. I know everyone goes through, and i know this is not a death sentence but it brought my understanding of death to the forefront. When I go out in to the world it all seems false and I just find myself questioning why we all do this knowing we are all going to die. I don't want to die or anything like that, it's just the way I see the world around me is so different now. I am just wondering if anyone else has felt this and if so how did you shake it to live happily? Thank you for any advice or just for reading! Ps. I am on an antidepressant and see a therapist.
  • justdiagnosed
    I was diagnosed around 6-7 weeks ago at this stage and it was completely out of the blue it’s defo made me more spiritual but one thing which scares me more than death is being half brain dead going around in a electric wheelchair and needing a carer or ending up in some sort of home I want to arrange things so if I ever get close to being like that there’s a plan in place 
  • bcavos
    Thank you for your comment. Mine was also out of the blue, I am spiritual not in a religious type I will try looking more closely at that. I truly hope you are never in that situation! Your profile shows you are young and if it was your first attack that is definitely in your favor, I'm starting to try to focus on thoes positive things but it is a process, I think making thoes plans are a very good decision to give yourself some control. 
  • maria1
    I didnt shake it, and I dont want to shake it. The quality of my life is better knowing that no one gets out of it alive, ha ha. I also know that dying is just moving on to the next chapter, because matter can never be created nor destroyed, it just changes its form, so whatever is next I will be there, whether or not I realize it. 

    After years of considering what my purpose is in life, I have come to the conclusion that doing my best is all that matters. That a half assed job is not good enough. Time is all we have, and we each have an allotment of time in this state, so what are you gonna do with it. Be the bet you can be, (join the army), sarcasm and humor is my goal in life, now, since I am no longer eligible to compete in the olympics, am allergic to money - it burns a hole in my pocket, am not going to invent or discover something, nor solve all of life's mysteries.

    Living with ms has taken me down all its roads. At one time or another I have experienced the losses, not being able to see, not being able to walk, not being able to think etc. and I always made a plan for what to do if it was permanent. 

    We, each of us, have a role to play in life, we may not like our job but that has little to do with how well we do it, we can waste our time with doing a sloppy job and thus deminish our integrity or self worth, then we can spend the rest of our days loathing ourselves. Problem solving is how we spend our time, what to wear, what to eat, what to do, when to do it, choosing is our dilemma, thousands of choices a day, choosing to be happy or choosing to be sad.

    Consider  this statement: Ignorance is the mother of fear. Now consider your life without fear, if you are unafraid of dying you can live the best life you can live, you can climb that mountain if you choose to, you can bungie jump over the river, you can deep sea dive, you are going to die anyway, so might as well do what you want, you are truly free. At 61 I got on a horse and did not care if I was going to fall off, it only took me 61 years to do something I had always wanted to do, finally. My partner was petrified and I was grinning ear to ear.

    We all have a job, for years I looked after everyone, it was a difficult transition to become the one cared for, but I chose not to make it difficult for those who were caring for me, I chose not to make their lives miserable, I allowed them the pleasure of giving to me and always did my best to accept their generosity graciously, even though I hated it, being in need, but it wass, is, my new job in life.

    Can you remember seeing someone who hated their job and showed you in every way how much they hated what they were doing and did an awful job of it? While walking to the museum one day we saw this kid riding around in a hurry on the mower doing a really sloppy job of it, zipping along missing patches of grass so it looked like a bad haircut, he wasnt much paying attention to what he was doing, he was just rolling along, dreaming he was somewhere else. The outcome was ugly, and he didnt even care, he had left a signature for everyone to see, crap ee.

    Yeah, you are going to die. Thank you so much for the topic of mortality, death, expiring. What do you want your signature to be, waht do you want to be remembered for, what do you want to leave behind. Do you want to take away from peoples lives, to be rememberd as a miserable old sob who resents everyone elses better life, or do you want to be remembered as someone who added to others existences. I sure dont want to be remembered as a blood sucker, and if I do my job right I wont be remembered at all, if I am fortunate in living my best, people will be as happy as they can be, I will not take anything away from them. Though I already know I have brought my share of unhappiness into some persons lives, no one is perfect, i just didnt do it on purpose, it was an error, we all make errors.

    We do not live in a vacuum, we impact others all the time, every moment, so, while we do make errors, do your best not to do it on purpose, no regrets, from the time you are born your clock is running down, how you use your time, with the tools you have, is your purpose, the journey, moment to moment, second to second. So when you look back to where you were you can see the beauty you have left behind. 

    Also, there are disability lawyers, persons who help you plan for all the worse case scenarios before they happen. You can call the national ms society to speak with a navigator about the practical matters of life with ms, and referrals. And we here are full of opinions and experiences to round out your education, ignorance is not bliss, KNOWLEDGE IS POWER. Which reminds me of a quote of a clothing manufacturer in NYC in the 50s thru 70s? Sy Syms, 'An Educated Consumer Is Our best Customer'.  
  • bcavos
    Your words are so full of truth i have always tried to do my best no matter what I was doing, and it does make everything better each day better. I just have found myself in a panic lately to do all the things I can do "in case" yet I try to slow down and recognise I have just experienced a trama and it is going to take time to understand what life looms like from here. I'm going to continue to tell myself time is all I have and doing my best with it is absolutely all I can do. I want to find a home in the mountains, grow food and trying to teach teens how important it is to understand where their food comes from. Right now that is a far away goal but with time I may be able to fill those hopes. For now I will listen to your words "do the best I can each day!" I'm so happy to hear of your horse it fills my heart with joy and made me smile! Thank you for all you do here you are a true inspiration and an honest speaker!!!!
  • maria1
    bcavos & justdiagnosed, your posts have struck a chord with me that is still ringing. Grappling with the emotions is/was difficult. Identifying my feelings in the early days was impossible. Has anyone ever said to you: Oh, you shouldnt feel that way!? Realizing every day I was going through the stages of grief for what i believed was a new permanent loss besides the one I was mourning yesterday. And learning that those feelings were also connected with childhood suffering at the same time, gave me the opportunity to face the growing pains of childhood quickly. Like all the feeling sorry for myself that i did not have parents who loved me, who were ignorant and just fighting for their survival while I got in the way. Iwas able to cry for that child, who I no longer was, then the adult me with ms had a much easier time of it. I let go of those childhood ??? horrors, pains, injustices, disappointments and miseries, I the adult, cried for that kid, as long and as hard as necessary for me to move on and face ms as a challenge along with identifying those feelings that made the journey more difficult. You see, I am very lazy, I try to find the fastest easiest way to get the job done, giggle. I have suffered enough, now I just have ms!
  • justdiagnosed
    Thanks funny you should mention childhood mine on paper was fine but there’s a strong element of resentment for how absent the folks where I was pretty much left to do my own thing from 12 onwards and it’s not until now that im facing the most scariest time of my life that the lonelyness has magnified itself cause again I am on my own with this like I’m out of here on Wednesday and I’ll be going back to my apartment facing a new way of life on my own  and the re examining of childhood or the bad parts of it have come to the surface to the point of actually being a bit of a prick to my folks through all this and all pushing them away although they are on a different planet and think it’s all going to be fine cause they heard a story about someone who had it and was fine for 30 years etc which sorta infuriated me Amm I really just don’t know what to do besides feeling a lot more spiritual and having a want to help people now which is a flip from the cynical me of 8 weeks ago like I always wanted to start a family that’s been important to me for a while but now I dunno if I want to bring a child into this world if I won’t be able to be a father how I should be Amm what’s also scary is how on earth is being single going to be like out there with ms Jesus like she would want to be a full on saint to go down any roads with a guy with ms a quick google is enough to even scare me there’s a lot more issues this happening has caused than being at peace with my childhood and I really don’t know how they can be solved the possibility of a mental degeneration is just horrendous 
  • bcavos
    I do completely understand what you are saying, this thing, this unknown has brought things I thought I had put behind me bubbling to the surface. It makes all those sufferings stronger and calls you to face them again! I am working through them again and finding that it has helped me remember that I am  stronger than than I remember. I'm sorry to have brought the past back for you, yet I thank you for your words they have made this day better for me! They also help me to look at myself more clearly. 
    Also I have spent the last 2 months online and it has helped and hurt my acceptance of this I know your parents are just saying what they think is right and it feels so wrong when you are the one facing the unknown. Trying to see the positive is a hard road and some moments you just can't but in the moments you can hold tight to it for it will carry you through the hard times. I hope you are able to find some peace in this time and acceptance in some moments. 
  • beaurylancambria
    When I was diagnosed 3 years ago, my first question was "When do I get my wheelchair ?" I felt like everyday that passed, put me closer to the wheelchair. In time, I realized if I was going to end up in a chair, I was going to go kicking and screaming. I have always been a fun, outgoing person. Being diagnosed changed me. I have done some things that before I would have been too scared. I rode a roller coaster for the first time since I was seven ( fyi, I still hate it ). I have been zip lining. In July, I am going parasailing. Mortality is not a choice, it's going to happen. Whether the wheel chair or death comes first, I'm determinef to go smiling either way!
  • bcavos
    I love your take on things! I'm trying to pull myself to that side of things I'm sure I will get there at some point! Cheers hope you keep enjoying life to the fullest!!
  • maria1
    beau......I heard a quote this morning that reminds me of what you have said: Knowing you are going to die is like getting a get out of jail free card, you have nothing to lose.

    'Freedom is just another word for 'nothing left to lose''!

    Do it before you are tool old, when the body wont let you. 

    Anybody ever bungie jump? or want to? If I did it now, they would have to push me off the fence, laugh, funnier than a giggle.
  • beaurylancambria
    You will get there! It took me about a year. In a weird way, my life has been better. I think we believe there's always another day. I now believe today is the day.
  • anywhereoutofthisworld
    I completely understand how you feel. Here's my back story - I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time. I myself see a metal health therapist and she has been as helpful as she can. I also am on a wait list to see a psychiatrist incase it's decided I need medication. I am currently under extra stress besides my MS diagnosis so it's a lot on my plate, and to find out you have a life long illness is never is easy to process no matter what stage of life you're at. I often ask 'why me' and 'why now' and you know, there's no easy answers, but unfortunately you gotta play with the hand you're dealt in life. I do my best to stay positive, for me music helps a lot, aside from the mental health sessions. I also try to stay calm and positive, even when I get my most depressed I try really hard to not get too low. I try and recall how I handled ups and downs prior to my official diagnosis and I realize my coping mechanisms were never very effective :(. I think in your case, you're on the right track as you're on medication and seeing a therapist. Maybe try music as a means of relaxing and maybe try meditation, I heard that can perhaps be a method of coping in really stressful times in ones life. Also there are support groups for MS, maybe you can find one in your area that can help. I hope you can find some peace, it's so important for your long term health that you keep stress as much at bay as possible. Feel free to connect with me on here if you'd like to chat. There forums are a great place to get stuff out as well.
    God hangs the greatest weights upon the smallest wires. - Francis Bacon
  • bcavos
    Thank you so very much for your communication it is such a blessing to have others to speak to that understand. I am greatful for your advice and am happy you are getting help as well. I will take your advice to heart. I hope you too can find peace in this! Thank you again!
  • maria1
    justdiagnosed, It i great the way your last post was done in free association. your thought keep flowing. That is a great lesson for all of us to keep letting our feeling and thoughts ramble on, so we can feel what is going on with us. No matter how old we are, the past is always with us, and feelings about the past are better felt than not felt, so they may disappear.  And you did it with humor too, good job, thank you. Remember, you can always rent a kid, then send the kid home!
  • cantstopwontstop

    Bcavos,

    I have been coming acrossed your posts because we were diagnosed the same month and year. I am also coming to different terms of acceptance. Have you always had that outlook on life about we are all going to die? Sometimes people have always had a bleak outlook at life, and sometimes people have lost positivity with diagnoses. I think my diagnoses has given me even more reason to live and have drive for life. We are all here to die if you look at life that way, but I would try not to! I would try to take positive strides for yourself at this point after being diagnosed. Take everyday like its your last if you can make it happen.

    We all will have good days and bad. I try to make everyday great. Surrouding yourself with positive people and a support system is also a big deal. Find a hobby that makes you happy, or a song that makes you smile. It is hard being diagnosed with this, but you are not alone. DO NOT forget that!

  • maria1
    bcavos et al, Now that we are on mortality here is a question I have been pondering:

    If you knew you had one day to live, how would you spend it?

    I would want to spend it outside, sitting on the lawn, feeling the air touch my skin as I listen to the birds singing and the bugs buzzing, while I look at the trees, the leaves the grass and the sky. Smelling the soil, feeling the grass on my fingers as I study the blue in the sky with the clouds dancing by as I taste the colors of sunshine earth sky and its animals. Having all my senses know they are alive and working, to feel life around me and with me, to be fully alive and aware, for one last time.
  • capitolcarol
    That is so hard to answer or to figure out exactly what one would do if they just had one day left.  Just thinking about it, I keep on coming up with different scenarios of what I would do.  But which one would I choose is the hard part.