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    #46
    I would love to grow old together. Yesterday I saw an old couple holding hands and kiss in line at the grocery store. I’m NOT into romance at all in anyway. Valentine’s Day is my least favorite holiday but that made me tear up.

    Not because of what they were doing but because what I know I’ll probably miss out on. I don’t think I’ll still be around in 40 years and definitely not able to walk and take my self shopping.

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      #47
      Originally posted by Daisycat View Post
      I would love to grow old together. Yesterday I saw an old couple holding hands and kiss in line at the grocery store. I’m NOT into romance at all in anyway. Valentine’s Day is my least favorite holiday but that made me tear up.

      Not because of what they were doing but because what I know I’ll probably miss out on. I don’t think I’ll still be around in 40 years and definitely not able to walk and take my self shopping.
      Please excuse my bluntness but you need to start thinking more positively. You're "not into romance" and lots of people are with you but romance isn't just PDA, it's the little things, things that other people probably don't see like the smallest gestures. I'm 53 and Valentine's Day isn't all hearts and flowers, it never was for me.... but it's a great excuse to eat lots of chocolate and it's in Feb, still have time to take off the extra weight before it gets warm.

      You will only miss out on what you choose to miss out on. Don't worry about 40 years from now, taking yourself shopping may be an enjoyable experience right now but personally, even if I didn't have MS, shopping is a chore. I live in the downtown of a huge city and I'd rather stick needles in my eyes than fight the crowd. My closest mall is one of those huge ones that stays open on Christmas Day/New Years Day, etc. Amazon is my new best friend, as is "Skip the Dishes", "Uber Eats" and Walmart, who will get my groceries and purchases ready so they just have to be picked up, or even deliver them to me! All this saves my precious energy for stuff I enjoy doing, not stuff I have to do.

      Again, please forgive me for what I'm about to say but you're allowing yourself to become a "victim". I was just like you when first diagnosed 13 years ago but one day something in me made me say "Screw you MS, you're NOT going to rule my life". I've had to find different ways to do things to accommodate my MS, sometimes they work, sometimes they don't, then it's time to find a new way. Yes, I get really down sometimes and have a good cry but I will not allow myself to be a victim of this disease, I will NOT let it win.

      Please try to adjust your mindset, all of the changes you have to make do not have to be done all at once. Take it slow, please give yourself time to breathe and adjust your life as needed, in a timely fashion, not ahead of when it needs to be done. Take it day by day.
      Jen
      RRMS 2005, Copaxone since 2007
      "I hope to be the person my dog thinks I am."

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        #48
        I don’t let myself eat chocolate anymore since sweets (any food that tastes good) in general is bad for us.

        Besides I despise Valentine’s Day since it’s really close to my birthday and growing up my party at school was also a joint valentines party and once I got older everyone was on dates so I had to celebrate my bday late or early.

        Now I don’t care to celebrate either so at least I don’t feel the need to vomit at all the heart shaped crap.

        I dont like shopping either. I never have. But it’s a necessary evil since I can’t buy toilet paper and fruit and spinach at work.

        It’s my independence I refuse to lose. Without that I’m nothing and if it takes waking up at 5 every day to get my 20000 plus steps in and living off the strictest diet ever I will do it.


        I thankfully enjoy working out. I actually forgot how much I enjoyed it until I started to get obsessive about it again.

        I’m going to do everything I can to prevent ever needing to find new ways to do things. I just can’t let people see me as helpless.

        As for my bf I love him and I wish things were different, but we have very different ideas about this disease.

        Comment


          #49
          Originally posted by Daisycat View Post
          I’m going to do everything I can to prevent ever needing to find new ways to do things. I just can’t let people see me as helpless.

          As for my bf I love him and I wish things were different, but we have very different ideas about this disease.
          Me too! The thought of being dependent on someone else is terrifying and unacceptable to me but as we age things do change with regard to our abilities. How old are you now?

          I have a few young girlfriends who totally can't understand it yet but I tell them things will change, and most not for the better. It is becoming more apparent to me now that I'm in my 50s and things are happening that I can't even blame on freaking MS. I have my own personal line in the sand and while my dear Catholic husband might not agree with it he will support my decision.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

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            #50
            Originally posted by Daisycat View Post
            I don’t let myself eat chocolate anymore since sweets (any food that tastes good) in general is bad for us.
            This sounds like you are purposefully punishing yourself. It is behavior that if not changed will seriously damage the relationship you have with yourself and others. I too have completely changed my diet, but I do indulge in some chocolate every now and then. I make my own without refined sugar - there are lots of sweeteners available if you really want to stick to a completely refined sugar free diet.

            The food I eat now tastes so much better than the food I used to eat. If you are finding that you need to eat food that doesn't taste good, then you need to re-evaluate your diet. What kind of diet have you chosen? Maybe some of us can help you with recipe ideas.

            Comment


              #51
              Originally posted by Jules A View Post
              It is becoming more apparent to me now that I'm in my 50s and things are happening that I can't even blame on freaking MS.
              Amen sister. On the earlier topic of parties and jokes, my capacity for small talk has tanked, with the overall decrease in proportion to my years on this planet. My ability to recall bad jokes sustains my confidence in long term memory but the bad ones are lost to the ages. It's pretty hard to know which of the cruel physical twists in the 50s are due to hormones, aging, or MS.

              All we can do is keep doing what keeps us feeling best if we have the resources. Gotta get our ducks in a row but it is still really important to have someone else to rely on. I think asking ourselves who those people are is a very essential part of aging as well as when diagnosed with something like MS.
              All the best, ~G

              Comment


                #52
                Originally posted by gargantua View Post
                My ability to recall bad jokes sustains my confidence in long term memory but the bad ones are lost to the ages.
                The GOOD ones are lost to the ages, that is...
                All the best, ~G

                Comment


                  #53
                  [QUOTE=gargantua;1515508]It's pretty hard to know which of the cruel physical twists in the 50s are due to hormones, aging, or MS.
                  [QUOTE]

                  This is sooo true! I really think the old lady hormone thing is my biggest issue right now.
                  He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                  Anonymous

                  Comment


                    #54
                    Jules

                    im 37 and I’m supposed to have another 30-40 years of being healthy. Family history had that pattern.

                    I’m very glad my bf mostly supports my choice. Our lines aren’t even in the distance of each other’s but at least agreeing is progress.


                    Sarabeach

                    im eating low sodium, low saturated fat, with lots of fruits and vegetables and lean meats. I am doing modified fasting 3 days a week as well.

                    Comment


                      #55
                      Originally posted by Daisycat View Post
                      Jules
                      im 37 and I’m supposed to have another 30-40 years of being healthy. Family history had that pattern.
                      Unfortunately no one can feel entitled to 67-77 years of good health even with a decent family history. If you want to be completely honest I'd do some digging because with aunts, uncles, cousins etc. I can't think of one family history I have taken, and I've taken thousands, that had zero health issues whether mental, physical, addictions, accidents...

                      I have always looked at the time of my dx at 39 which is kind of late as a blessing. I was fairly mature, settled and my finances were in a good place as compared to when I was a hot mess in my 20s. A diagnosis of this magnitude at that time would have likely played out with me dying face down in a trash can filled with cocaine or something equally pathetic.

                      I'm sure some will find this inflammatory but there are few well into their 70s or 80s whose lives I admire so at this point I'm quite content with my hope for another 10 years. I begged and prayed for 10 years at the onset of this and am now being a bit greedy I suppose. I believe I am at peace if the bottom falls out tomorrow and plan to graciously accept that I had a good run for > 1/2 decade.
                      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                      Anonymous

                      Comment


                        #56
                        Originally posted by Jules A View Post
                        I have always looked at the time of my dx at 39 which is kind of late as a blessing. I was fairly mature, settled and my finances were in a good place as compared to when I was a hot mess in my 20s. A diagnosis of this magnitude at that time would have likely played out with me dying face down in a trash can filled with cocaine or something equally pathetic.
                        Are you me? Because this is basically how I spent my early 20’s
                        I can’t blame my behavior on being diagnosed with a crappy disease. I was just a a reckless person when I was young.

                        [QUITE=Jules A;1515534] I'm sure some will find this inflammatory but there are few well into their 70s or 80s whose lives I admire[/QUOTE]
                        Ditto. There were very few patients I came across who were still rockin’ it in their old age. They used to always lean in and give me the same words of wisdom: “Don’t get old.” I always said, “You do know what the alternative to that is, don’t you?” Whenever I said it I realized that I probably will fulfill the alternative and I’m okay with that. I’ve lived a lot of life in only 35 years and I’m sure I’ll live a lot more in the coming ones. I won’t feel cheated if I go early.
                        “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                        Comment


                          #57
                          [QUOTE=IntoDust;1515537]Are you me? Because this is basically how I spent my early 20’s
                          I can’t blame my behavior on being diagnosed with a crappy disease. I was just a a reckless person when I was young.

                          Ya know when I read your signature line about beef jerky in a ball gown I thought holy crap that is me! But then I looked at your beautiful avatar photo and thought... I wish.
                          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                          Anonymous

                          Comment


                            #58
                            Originally posted by Jules A View Post
                            Ya know when I read your signature line about beef jerky in a ball gown I thought holy crap that is me! But then I looked at your beautiful avatar photo and thought... I wish.
                            You know, Jules, I wish I could look like that too. But that picture was taken 6 1/2 years ago on my wedding day. I’m so camera shy I don’t have any recent pictures to post. The reality now is that I’m lucky if I’ve even showered. I’m too tired to be that extra. Most days I’m a peg below basic
                            As for the quote, have you seen The Unbreakable Kimmie Schmidt? Her pal Titus is probably my favorite TV character from all time and that quote is my favorite of his. I had to use it somewhere!
                            “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                            Comment


                              #59
                              Jules
                              Everyone I have talked to in my family has always said everyone has been very healthy. My mom gave me a book going back a very long time in our family’s history. The only one issue anyone ever had was colon cancer. I can’t really ask the family members I do not talk to on a regular basis because this would raise questions. If this diagnosis had come when I was in my 20s I am pretty sure I would have ended up like you are describing. The only issue I really have now is student loan debt , but if I am on disability I don’t have to pay them back… so for now minimum payments it is. This way I can enjoy the next few years of my life and reevaluate after that.


                              I do not think it is selfish or wrong to want to live to a decent age and being able to spend your retirement age on your dog rescue like you had planned. Having to 100% change your life plans is kind of upsetting and it baffles me that people here either seem to think I should still do it , accept what is my life and find a way to be happy ( never going to happen ) , or find other plans. Nothing I think of that comes with this disease sounds like a good way to spend my old age. I can’t continue my plans for a dog rescue because that would be one of the most selfish things in the world to do to those animals ever.

                              Comment


                                #60
                                Originally posted by Daisycat View Post
                                Jules
                                Everyone I have talked to in my family has always said everyone has been very healthy. My mom gave me a book going back a very long time in our family’s history. The only one issue anyone ever had was colon cancer. I can’t really ask the family members I do not talk to on a regular basis because this would raise questions.
                                It sounds like you aren't 100% sure. Years ago people were more stoic and also hid things like, old aunt whoever who walked funny, or old uncle whoever who went to live in a hospital...yeah a mental hospital. I'd bet there are some skeletons in the closet but even if not this lifetime doesn't come with any guarantees so while I understand first hand how shocking it is to get a MS diagnosis I also never had the why me? thoughts. Why not me?

                                Originally posted by Daisycat View Post
                                If this diagnosis had come when I was in my 20s I am pretty sure I would have ended up like you are describing. The only issue I really have now is student loan debt , but if I am on disability I don’t have to pay them back… so for now minimum payments it is. This way I can enjoy the next few years of my life and reevaluate after that. [/FONT]
                                Lol thats three of us and one other who hasn't weighed in that I suspect would make #4 in our group of wild young-ins. In retrospect I'm appreciative of the wild days because I have always felt as if I lived life to its fullest no matter how things play out.

                                I actually agree with not paying off the student debt quickly if the rates are low in the event that you are disabled some day and they could be discharged. I would be spending some of that money on fun experiences and investing the rest.

                                Originally posted by Daisycat View Post
                                I do not think it is selfish or wrong to want to live to a decent age and being able to spend your retirement age on your dog rescue like you had planned. Having to 100% change your life plans is kind of upsetting and it baffles me that people here either seem to think I should still do it , accept what is my life and find a way to be happy ( never going to happen ) , or find other plans. Nothing I think of that comes with this disease sounds like a good way to spend my old age. I can’t continue my plans for a dog rescue because that would be one of the most selfish things in the world to do to those animals ever. [/FONT]
                                Its not selfish or wrong to want to live a long healthy life but it is rigid and short sighted not to be able to shift gears when life throws a curve ball. Personally I'd continue with the goal to have a dog rescue. When you retire you can either bring in a partner, which is probably smart for anyone taking on responsibility for other lives or if you health isn't good you could always donate the money to a reputable dog rescue which would accomplish your end goal to help animals in need.
                                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                                Anonymous

                                Comment

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