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    #61
    Originally posted by Myoak View Post
    Daisycat,
    You are definitely on the right track with keeping your diet in check. There are benefits to various diets used by pwMS; those can and should be investigated for individual fit. Gold is found by those who search for it… Congrats on the investigation, the searching you do to enhance your life!
    I agree that there are a lot of important changes to your diet that really can benefit all people, not just those with MS! And I think it is so important and pro-active for anyone with MS to do some research about the variety of diets (and not be too discouraged that there are several variations about what people consider to be the right approach) However, it is important to find the right balance. I've drastically changed my diet and I still find making meals and eating enjoyable. Healthy doesn't have to taste terrible.

    Daisy, you've commented about losing a lot of weight, and it was only mid October when you first started posting about considering diets. Unless you had a significant amount of weight to lose, that's a really drastic change and I worry that your obsessive diet may have unintended side effects on your health.

    I am going to live of nasty food and have people think I starve myself since I have lost 30-35 pounds since I started this diet.

    Comment


      #62
      Conclusions: High dietary quality was associated with lesser disease severity using measures of disability, mobility and cognitive function. Longitudinal studies should evaluate if high quality diets predict slower rates of disability accrual.

      I think that there is a big difference between “high dietary quality” and an insanely restrictive diet.
      Super restrictive diets can become physically and mentally unhealthy. The sense of control one has over their food intake and weight loss can become a vicious cycle all its own and lead to an unintentional eating disorder.
      “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

      Comment


        #63
        “I am going to live of nasty food and have people think I starve myself since I have lost 30-35 pounds since I started this diet.”
        ”I love how tiny I am now.”

        These two quotes have red flags all over them. Not on their own, but in the context of all of the other posts from the past few months.
        I’m gonna step away from these posts because Daistcat has made it clear that she doesn’t want help. I even reached out one on one and she came on here and blasted it as a “waste of time”.
        She’s resistant to help and at this point, the absolute worst thing to do is give an obvious eating disorder any attention - good or bad. I’m not gonna participate in this any longer.
        This isn’t meant to be a dramatic exit post, I promise. I just feel that this is so far beyond just denial. It’s entering a dangerous place.

        “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

        Comment


          #64
          Daisycat,

          I think you will find this TED talk supports much of what you are doing as far as fasting goes and furnishes understanding on how to go on and benefit from fasting... fast and then replenish.

          Fasting and getting skinny is only half the battle... you also have to know how to benefit from having done so! This TED talk explains it well… Fasting: Awakening the Rejuvenation from Within | Valter Longo | TEDxEchoPark. Not sure if the youtube link for this TED talk will work here but if it doesn’t you can go to youtube and enter the title.

          https://www.youtube.com/results?sear...%3DdVArDzYynYc

          Also, taking place at the Missouri university, a fasting trial (NCT03539094) is expected to enroll 60 RRMS patients. Half will be randomly assigned to eat a standard Western-style diet seven days a week, and the other half to Western-style diet five days a week, with two days set aside for fasting (consuming a maximum of 500 calories each day).

          For anyone interested in a fasting trial NCT03539094 started recruiting last July. They are looking for 60 PwRRMS. 30 would eat a Western-style 7 days a week and 30 would eat a western-style diet for 5 days and fast for 2 days. I’ll furnish a link. I believe the discovery that fasting regenerates stem cells led to this trial...

          https://clinicaltrials.gov/ct2/show/...39094#contacts

          Also, a good article... https://news.usc.edu/63669/fasting-t...immune-system/

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102383/

          Anyone considering fasting, calorie restriction, or doing one of the MS diets please make sure to discuss it with your neuro or family doctor.

          Comment


            #65
            Jennaly


            Unless I misread it the person said it would be worse to have a peanut allergy than this disease… I am curious if the fact that you have this disease changes your perspective about if one might know/wonder since you are probably much more sympathetic.
            And I’ll choose my own pity party in my house surrounded by my animals, wearing comfortable PJS, watching Netflix and relaxing over being around a huge crowd any day. ( To be fair before this crap I would have probably taken the first one 2 out of three times.


            Sarabeach


            Yes I agree stress can make this disease worse which is why I am doing everything I can to NOT think about the fact that every day little by little my brain is slowly shrinking. And with this disease food I like isn’t exactly an option.


            If I need to reduce stress I have my go to method of piercings and tattoos. I got a bunch more things I can get so I will be good for awhile. Usually it can give me at least 1-2 weeks of stress reduction.


            Myoak

            Thank you… I feel like several people here judge ne for being strict on my diet, but I know myself and I know one cheat meal leads to a cheat day and it never ends. As long as I don’t give in to that first whatever I am good…. But after one slip up I can’t get back on track. And YES!!!! Those diets are what I found and found several articles on the same topic from reputable sources. My problem now is what do I do now that I am at my goal weight. ( almost)


            Intodust
            I would MUCH rather people think I have an eating disorder than what I really have. And there is nothing wrong with loving the fact that I am tiny. I enjoy being able to wear my old clothes and buy new ones and actually feel decent in them.


            And BTW what I said was a waste of time was the peer one to one number I called that is set up from my job. I actually thought you were helpful one on one but you stopped responding, but do what you need to do.

            Comment


              #66
              I stated I rather have MS then peanut allergy, not someone else. And I agree with introdust that it may be time to step away from this thread.
              Each thread daisycat gets on turns into a pity party and I’m bowing out. Some of us want to ask questions, get opinions and even have a civil debate. These threads turn in to “whoa is me”. There is no trying to help someone who doesn’t want it.
              This thread was about people’s thoughts on point of view Impacting MS and turned into, once again, how bad daisycat has it.
              I think positive mindset helps one with a disease but that is only my opinion!
              have a good rest of the weekend!
              Dx March 2018; possible first episode: August 2011
              Tysabri May 2018-June 2019, Mayzent July 2019

              Comment


                #67
                Jennaly


                I cannot understand how a peanut allergy is worse than this. I am sorry but that just is something I cannot understand. You are welcome to step away from any thread at any time. I try to stay away from most of these boards because I know my I have no future and see no point in anything view is not welcome here.

                I wish I could post the questions I have, but instead I have for the most part settled for Dr Google since Dr Google will at least give me A LOT of different viewpoints and not judge me because I do not view my life as one that is worth anything. And I can for the most part separate the crazy from the possible to the OK I could see that being true.

                So since I am never going to be happy about this disease there is not much left to say. There is no cure for this so there is no help for me. Denial and not thinking about it has been actually working out for me these past few weeks.


                People with this disease should be able to feel sad and feel sorry about it. It is beyond ridiculous to expect someone to see nothing but rainbows and unicorns for their future when they have this disease.


                My opinion is a positive mindset is nice if it works for you , but I would rather be realistic and see my future for what it will probably be and do what I can to push it off for as long as possible.

                This board is supposed to welcome all viewpoints , but every time I come here all I see is people (well some) people expecting happiness and no depression ever. It would be very nice if either we could get a section of the board for where people want to vent and voice complaints so people who want nothing but rainbows and puppy dogs posts can know to stay away.

                That is the one thing I still need to figure out is how to vent my depression and anger since it is not welcome here and I am not paying for a therapist who isn't going to help me. And honestly I am humiliated about having this so I would rather not have anyone else know about this.

                Comment


                  #68
                  Thanks to all who have posted.

                  What I have taken away from this thread and the various discussions is pretty simplistic. I am sure some people even think it was a wasted question.

                  To me, it became obvious that optimism leads to higher perceived quality of life and happiness. Pessimism in turn, seems to lead to a perceived lower quality of life and reduced happiness.

                  As for disease impact, some pretty optimistic people have also experienced progression, but it appears they have higher resiliency strategies.

                  Agree with some points made:
                  1. Happiness is a choice. This choice may sometimes need the help of a therapist and/or antidepressant. But getting the help is a choice to support your happiness.
                  2. You cant help anyone who doesn't want to be helped. It all starts from within.
                  3. When Bad Things Happen to Good People is a thought provoking read.
                  4. It's ok to cycle through our emotions when we need to - keep cycling and don't remain stuck for too long.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #69
                    Originally posted by Daisycat View Post
                    Jennaly



                    That is the one thing I still need to figure out is how to vent my depression and anger since it is not welcome here and I am not paying for a therapist who isn't going to help me. And honestly I am humiliated about having this so I would rather not have anyone else know about this.
                    You are terribly wrong. People are fine with depression, anger and sadness. We get it. We have all been there. People want to help.

                    The statement above is what I don't understand. How do you know if you haven't tried? And No, a wellness line at work isn't therapy. When I was first diagnosed, like you, blind-sided by it. I eventually went to therapy. I couldn't even talk about MS without breaking into tears. The first sessions were brutal. But they paid off.

                    Yes you can choose to stay miserable, we just aren't going to be miserable with you. We will be miserable when something in our life occurs, but then we all work hard to get out of our misery.


                    You say your denial strategy works for you, but then say you are miserable, cry at least once a week. So your posts are confusing - you don't want help, but they actually scream you want help. That is what people are frustrated by.

                    You seem to have an all or nothing strategy to life: eating, gym, career, and MS. In life, things are never all or nothing - there are always middle points. Something therapy could help with.

                    So if you want to post about your depression, sadness, and general unhappiness with the life you choose to lead, go ahead and start a new thread for venting only. But when you do that off topic in other threads, it frustrates people.

                    If you truly want to keep your mind off MS, go volunteer somewhere where people have a tough road. A homeless shelter, a battered woman's shelter. I would even say a group home or senior center but know you couldn't handle physical or mental disability.

                    Absent therapy, maybe if you take the focus off yourself, things will get easier.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #70
                      Thanks for the thread pennstater!

                      I feel lifted. MSW is truly a valuable resource.

                      Not only does the zeal of those who seek it prove a better quality of life, but the blindness of those who seek it not.*

                      Jer

                      *with apologies to Blaze P.

                      Comment


                        #71
                        Originally posted by 502E79 View Post
                        Thanks for the thread pennstater!

                        I feel lifted. MSW is truly a valuable resource.
                        I add my thanks, also, Kathy! Discussion often opens our understanding to new information and insights. Hopefully, the discussion will remain related to the original topic and not stray too far, however, there is much also to be said for timeliness in making a comment when a loosely related topic is mentioned because that is how we learn.

                        Everyone is free here to express their individual feelings... understanding that we all change with time. Not one of us is the same person we were 10 years ago. Sometime small, sometimes greatly, but we all change.

                        Let's give grace as we all change and continue sharing whatever is on our hearts in full support of one another.

                        It really blessed me to read the "Great results so far on Tysabri" thread. Not for everyone, but for many, Tysabri is working fantastically well; better than they ever expected a DMT could! It is such a fallacy to believe just because Tysabri is an immunosuppressant you catch colds or infections easier. My spouse did not catch one cold per year from 2002 through 2016 on Tysabri. Again, not everyone gets results like that, however, many, many people do. Some people get fewer infections on it, not more, nor is it exceptional.

                        I love reading that thread because of the optimism. Optimism, that I believe is created by an effective DMT.

                        Comment


                          #72
                          It sure doesn’t seem like 50% of the people here are fine with how I feel. They seem to think I should stop repeating myself and just move on. The reason I do not think a therapist will help me is because I still can’t even say the words of what this is. I have two names I call it. Disease (one I use here) and another that I will not say.



                          I am working hard to live in avoidance and denial. It works really good most days. I have my real job, my “side jobs” , my weight loss , and my 2-3 hours of Netflix to do every day. I only am thinking about it today because it is the day I get to stab myself with my medicine so it’s hard to not think about. As for crying It is usually if it is one of the days I have to give myself my medicine and I had the tiniest thing go wrong t work.
                          And I am glad for those who have found a way to have this disease and be happy. That will just not ever be me. I wanted so many things in life that I will not have now and I cannot accept that. As for wanting help, I want advice on how to make this disease not progress , how to avoid thinking about it , what diet is best , and even what kind of things should I be trying to do before this disease progresses to where my life is not a life.


                          I will try to keep my own feelings about this disease out of this thread… but to answer your question in my life I have always found being realistic about things is better for me. Being optimistic, only to end up disappointed hurts a lot more than hoping for the best and ending up having my heart ripped out.

                          - Not talking about this disease with this one but just different life experiences in general…

                          I always say to hope for the best but to prepare and expect the worst. It’s been my life motto and for everything else in my life it has helped.

                          Example – my cat was given 6 months to live almost 4 years ago. She is sitting in my lap as I type this. I did not want her to die and I did everything and I mean everything to give her a fighting chance for those 6 months and here she is today, happy and spoiled and very loved. But I was fully prepared for what was probably going to happen having seen cases like hers and knowing the 0.000001% of cases don’t exist. ( or they only exist in textbooks )



                          The highlighted was my very first post in this thread. It in my opinion was not negative and was giving an example of why I always expect the worse but hope for the best. (And what do you know it worked out)

                          And my focus is off myself 40 plus hours a week. I am committed to my patients while I am at work. I fear that I may one day harm one of them and that is the reason why it ends up with me being focused on myself at work.

                          Comment


                            #73
                            Daisycat - Few things jumped out at me.

                            Originally posted by Daisycat View Post
                            I am working hard to live in avoidance and denial.....I only am thinking about it today because it is the day I get to stab myself with my medicine so it’s hard to not think about.

                            I wanted so many things in life that I will not have now and I cannot accept that.


                            I will try to keep my own feelings about this disease out of this thread… but to answer your question in my life I have always found being realistic about things is better for me. Being optimistic, only to end up disappointed hurts a lot more than hoping for the best and ending up having my heart ripped out.

                            - Not talking about this disease with this one but just different life experiences in general…

                            I always say to hope for the best but to prepare and expect the worst. It’s been my life motto and for everything else in my life it has helped.
                            So everyday you inject, you can't avoid thinking about MS? Is it that some days you barely think about it when injecting while other days, it overwhelms you? What is the ratio good to bad? How long does thinking about it last on days you inject?

                            I don't know why you can't expect the best related to progression, but prepare for the worst if that is part of your life's motto. That is being realistic. Realism doesn't need to equate to pessimism, which is what you have done. Expecting the worst isn't being realistic, it's being pessimistic.

                            Many of us have subscribed to expect the best, prepare for the worst. Your cat's odds were way worse than what your lifetime disability odds are. Glad your cat is hanging in.

                            You are limited in life right now by only yourself. How do you know you can't have out of life what you want? The only way I know you can't have it is because you won't even try. You recovered fully from your optic neuritis, started on a DMT early, and are working out. Can't comment on diet since not really sure what you are following, whether Wahls, Paleo, or other diets sometimes followed for MS.

                            Myoak referenced an uplifting Tysabri thread. The poster - a surgeon who had to stop operating, but is now back in the operating room after changing meds. Not referencing it to say change your meds, but because of his job. I know you worry about making a mistake, but you have confidence in your skills. Even without MS, a risk was always there. Unless you know symptom wise there is a reason to not be in surgery, remind yourself you are good at your job and stop playing what-if games. If you were at peace with avoidance and denial, this wouldn't even be a thought.

                            My recommendation to volunteer was with people, so you can see what you have in life. It could be just a few hours a month. Work doesn't count.

                            Finally, you probably know better than anyone that pets feel our emotions. When we are stressed and anxious, they are stressed and anxious. Our dog, Koda, was trained to never jump up on anyone or sit on laps/furniture unless invited. I was crying one day while my husband was working and Koda kept putting his head in my lap, giving little cries himself. I knew he was stressed, but I couldn't stop. So he jumped up and put his paws on my shoulder almost around my neck, like he was hugging me. He stayed there until I stopped crying. I realized I had to get my act together not just for me, but for my husband and Koda. So do something for your pets' sake.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #74
                              Originally posted by Daisycat View Post
                              They seem to think I should stop repeating myself and just move on. The reason I do not think a therapist will help me is because I still can’t even say the words of what this is. I have two names I call it. Disease (one I use here) and another that I will not say.
                              I'm fine with you continuing to repeat yourself and vent here but I hope you do continue to "move on" for growth in your life. My strategy which has served me well, and maybe is a form of optimism afterall, is too keep complaining about everything because uhhhyeah it sucks! but move it along. It really sounds like you are doing that at times with your plans for concerts and tattoos.

                              A therapist could help you say the words multiple sclerosis and that would probably be a huge step toward acceptance. Unfortunately the bottom line is we gots this, wish we didn't, but we do. Own it and move on as best as you can. Really what other options are there? A ridiculously restrictive diet? Crying at least 3 times a week when taking medication? Missing out on educational and social events? Not rescuing as many critters who desperately need your help as you can? IDK I figure there could be plenty of time that I'm unable to leave my home or bed in the future thanks to this monster so for today I'm doing all I can. Which includes going to the dentist, renewing my drivers license, looking at real estate and then happy hour with girlfriends. I'll be offline in 5 minutes, lol.

                              Originally posted by Daisycat View Post
                              I am working hard to live in avoidance and denial. It works really good most days.
                              In my opinion and experience acceptance is quicker, more productive and peaceful in the long run but your choice. And trust this is a choice. Your black and white thinking is causing you not to be able to get out of your own way. As much as I wish the world was black and white its not so learning to embrace the gray has actually been a positive for me.

                              Originally posted by Daisycat View Post
                              [B][I]I will try to keep my own feelings about this disease out of this thread… but to answer your question in my life I have always found being realistic about things is better for me. Being optimistic, only to end up disappointed hurts a lot more than hoping for the best and ending up having my heart ripped out.
                              I also prefer to be cynical and realistic but that does not mean I will stop living my life and enjoying the many blessings that I have for today. I had always thought if/when I am debilitated by MS that I'd be a bitter recluse and while I have plans should that happen I'm also at a place now after so many wonderful, otherwise healthy years, that I'm planning to attempt to be gracious and thankful for all good years I have had. Many of our comrades with MS have not been so lucky and in honor of them I believe those of us who are lucky comparatively speaking need to be appreciative.
                              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


                                #75
                                Originally posted by pennstater View Post
                                Finally, you probably know better than anyone that pets feel our emotions. When we are stressed and anxious, they are stressed and anxious. Our dog, Koda, was trained to never jump up on anyone or sit on laps/furniture unless invited. I was crying one day while my husband was working and Koda kept putting his head in my lap, giving little cries himself. I knew he was stressed, but I couldn't stop. So he jumped up and put his paws on my shoulder almost around my neck, like he was hugging me. He stayed there until I stopped crying. I realized I had to get my act together not just for me, but for my husband and Koda. So do something for your pets' sake.
                                This is so true! I used to have a cat, my longest lived one by far at 18 years, who would become absolutely distraught if I cried or raised my voice in an angry tone, both of which are rare for me.

                                Although now that you mention it Kathy I'm fairly certain the self-centered group of ungrateful cats I have now couldn't give a hoot. Lol, oh well thats one of the things I love about cats it is expected that I wait on them like a servant.
                                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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