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I have MS and it is the best thing to ever happen to me

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    #16
    Yes, but no, but yes, but no. Behind every silver lining is a dark cloud of despair.

    Good for you, and sarcastic and bitter as I may sound, I do mean that.

    I have to say I was never particularly optimistic pre-MS diagnosis, but post-MS rx, I am definitely not a believer in the notion that dreams can come true.
    Something to do with the wheelie-walker damaging the furniture and the paintwork, (always wondered about those scrape marks in homes for the aged, now I know) and causing quite a tad of back pain, methinks.

    If you can see an upside then I really do salute you. Let's raise a glass to whatever floats your boat. Me, I'm having a Pepsi Max. Here's cheers.
    Long may it continue.

    I'm so, so, soooo tired.

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      #17
      YES!

      I, too, have said this. Not at the beginning of my diagnosis. And, on my bad days, I may not. But, overall, this is my mantra. The realization of the rat race of life that was a part of my life, was not what I needed. I am able to spend more time with my boys during the years that they need me. It is not as much a what a stay at home parent would be. But, far more then two working parents would be.

      I, too, consider myself fortunate. I am able to still do a lot. So, I pat it forward, also.

      Keep it up. For those of you that are not here, I feel for you. I hope that you can find moments that are bright, at least.
      God Bless and have a good day, Mary

      Comment


        #18
        I've never, not once, been able to relate to that saying of MS being the best thing that has ever happened to me.
        And I've never, not once, asked GOD, why me?
        But most of all, there is not and has never been anything good about MS coming into my life.
        Trust me every time I see that saying I try with all my might to think of something "good" that has enhanced or bettered my life now living with MS...but nope, can't find it.
        That's just my 2 cents.
        Love this forum because there are so many diverse views/emotions & we can all be honest here.
        Happy day all

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          #19
          MS and the elusive silver lining

          I agree with everyone! I've had MS for 40 years and when I was relapsing-remitting the affects of MS could be safely ignored/hidden. I pretended I had no problems, was able to work and keep my diagnosis secret from everyone but my husband. At various points I had to adjust and let more people in on my secret. For the last fifteen years I've been, frankly, everyone's good deed for the day. I must look even lamer than I feel. But I've learned to be grateful for the good intentions of 99% of my fellow humans. Grateful I don't have a rapidly accelerating primary-progressive version of MS, as a friend of mine did. She died. I'm alive and tripping over things.

          When my life is truly stressed, though, there is nothing, nothing, nothing good about MS. It's painful, expensive, incredibly difficult to cope with on too many days. I hate being hyper-aware of the worst potential possibilities every time I go out. I was going to list them but we all know what we struggle with. The potential for public humiliation is ever-present. My husband is as supportive as he can be, but he has no idea how hard I work to do something that takes him a few minutes.

          When I plunge into a project or problem on my computer I can forget the physical effort of MS for a few hours and I feel freed. Life is not all bad. I've also found cultivating a sense of the absurd is my life-saver. There's a point where the whole miserable MS experience is so ridiculous, laughter is the best option.

          Over all, I agree with M Romanow. I have a very different point of view because I slow down and savor whenever possible. I'm alive and I can give back to the best of my limited ability.

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            #20
            Yes indeed, Terith. Couldn't (literally) have said it better, especially being everyone's "good deed for the day".
            That's me. And MS is basically ridiculous, so what you do but laugh? (There is "sob uncontrollably", of course. Can't do that forever.)

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              #21
              I have never understood this mindset. I can understand that MS might bring good things as well as bad into somebody's life, however to say that it is the best thing that has ever happened to me ... to be honest this makes me a little bit crazy. I can't help but wonder if those who think or say this will carry on thinking and saying this when they can no longer walk, live without pain, swallow, wipe their own butt, have a life, lose their independence, are the walking dead, ect, etc.

              Yes I can say that as a result of MS, I have met some amazing people which I would not normally have. I can say that I have developed a certain sense of awareness and appreciation which I did not have prior to MS. But to say that MS is the best thing that had ever happened to me? not in a month of Sundays.

              I think it is one thing to say that good things have come out of this horrible bad thing and another thing to say that it is the best thing that ever happened to me. I guess the only thing I would say to that is can I have some of whatever it is you're smoking LOL
              Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

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                #22
                I have grown spiritually on my MS path, and I use to believe my MS deserved the credit for it.
                But I came to realize MS was just my path to enlightenment, it was my spirit that traveled the path.
                Maybe I would have grown spiritually on a none-MS path, but maybe that is just ego speaking.

                We are all on our own unique path and have our own lessons to learn, so rather your path makes you a MS warrior or civilian, ask why me? or cry why me! depends on your lesson.
                To me how well our spirit learned its earthly lessons is what makes us a better soil, and who is to say a have a slow enlightenment is better than an end of life moment of enlightenment.

                I have learned to embrace my MS-warrior path; I have been bless in many ways and try to give back despite or maybe because of my limitations and feel good and blessed about that.
                But maybe once in our true heavenly lives we will learn that those who don’t feel blessed now are the ones truly blessed.

                Forgive me for my ramblings, it is hard to say don’t give MS credit for the work you have done nor feel guilty for your blessings and at the same time say to others don’t feel negative about having a hard path.
                Give life meaning, live life by the 9 Noble Virtues.

                Comment


                  #23
                  I tend to be, pretty much, a glass-half-full girl, and don't spend a lot of time bemoaning my MS. I'm on disability. I sleep ten hours a night. I take two naps per day. I have balance problems, vision problems, fatigue and stamina problems, frequent urination problems, etc.

                  But, I get by and live a decent life. I volunteer in my church and community approximately 10 - 15 hours per week. I have supportive friends and family. I rely on my faith. Things are OK.

                  And, there definitely have been silver linings behind the cloud of MS. But, MS is still a cloud, and I have experienced many losses because of it. And, no. I don't believe that MS is the best thing to ever happen to me. It remains one of the most difficult.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #24
                    Do I remove my thread

                    After reading all the comments in response to me saying "I have MS and it is the best thing to ever happen to me", my gut reaction was to delete the thread. I felt ashamed and embarrassed thinking I had disrespected and hurt other people living in pain with this terrible disease.

                    But than I thought about what I had lost and decided to share with you:
                    • My ability to run. I had always wanted to run a marathon.
                    • My ability to really dance with my wife
                    • Feeling in my left hand
                    • My cognitive ability. I graduated with my MBA in May of 2009 and got diagnosed with MS in September.
                    • My ability to work. I have not worked since March of 2010


                    I feel like I lost a lot. I thank GOD for keeping most of the pain away from me so far and I take that as I sign he wants me to spread joy and kindness to my fellow man. I cannot change what has happened to me or anyone who reads this. All I can do is try to pass on my love and support as we all journey through this MS Madness.
                    Possible MS 1998, RRMS, Dx 2009. Betaseron- Sep '09 - April '15, Aubagio- April '15 to present.

                    Comment


                      #25
                      Very nice to see something positive. It sure makes you appreciate things more. I enjoy going outside and doing the little things now. A coffee and walk with a friend, dog walk by the river, sitting on the deck on a nice day, or sitting out and just enjoying the nice sky and Northern Lights. I have downer days too but I feel as though life and things has a bit more beauty now.

                      Warriors unite!

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                        #26
                        Originally posted by MRomanow View Post
                        After reading all the comments in response to me saying "I have MS and it is the best thing to ever happen to me", my gut reaction was to delete the thread. I felt ashamed and embarrassed thinking I had disrespected and hurt other people living in pain with this terrible disease.

                        But than I thought about what I had lost and decided to share with you:
                        • My ability to run. I had always wanted to run a marathon.
                        • My ability to really dance with my wife
                        • Feeling in my left hand
                        • My cognitive ability. I graduated with my MBA in May of 2009 and got diagnosed with MS in September.
                        • My ability to work. I have not worked since March of 2010


                        I feel like I lost a lot. I thank GOD for keeping most of the pain away from me so far and I take that as I sign he wants me to spread joy and kindness to my fellow man. I cannot change what has happened to me or anyone who reads this. All I can do is try to pass on my love and support as we all journey through this MS Madness.
                        I'm glad that you didn't remove your post. Also glad that you added your losses. It helps us to know that you are not burying your head in the sand and saying "All is good".

                        It is good, though, to be positive, and it sounds like you have many things to be positive about. It's not disrespectful to be grateful for the blessings that have accompanied your losses.

                        We all have different perspectives, kind of on a "grateful" or "sad" continuum. They are all valid; and none are wrong.
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #27
                          Originally posted by MRomanow View Post
                          After reading all the comments in response to me saying "I have MS and it is the best thing to ever happen to me", my gut reaction was to delete the thread. I felt ashamed and embarrassed thinking I had disrespected and hurt other people living in pain with this terrible disease.

                          But than I thought about what I had lost and decided to share with you:
                          • My ability to run. I had always wanted to run a marathon.
                          • My ability to really dance with my wife
                          • Feeling in my left hand
                          • My cognitive ability. I graduated with my MBA in May of 2009 and got diagnosed with MS in September.
                          • My ability to work. I have not worked since March of 2010


                          I feel like I lost a lot. I thank GOD for keeping most of the pain away from me so far and I take that as I sign he wants me to spread joy and kindness to my fellow man. I cannot change what has happened to me or anyone who reads this. All I can do is try to pass on my love and support as we all journey through this MS Madness.
                          No need to delete. MS has taken a lot from a lot of us. My personal regret is not being able to run anymore. Keeping a positive attitude is important. I was dx'ed in 1988 at age 30. Didn't miss a day at work and retired from NASA last year.

                          Oh, like your avatar. Graduated from there in 1980.

                          Tom
                          "Doubt is not a pleasant condition, but certainty is an absurd one."
                          - Voltaire

                          Comment


                            #28
                            Hm... mixed feelings

                            I'm not prepared to say that MS is a good thing. But it was a wake-up call to treat myself better and take care of my body. I've been in the best physical shape of my life, probably, since being diagnosed because I know that's how I can control other health issues that could affect my MS. And there's probably some effect on the MS, too.

                            I tend to see it as the final thing in a series of events that made me pay attention to my health and well-being. Nothing else made me slow down and take care of myself - but it would be nice if the thing that did hadn't been MS.

                            Comment


                              #29
                              Originally posted by MRomanow View Post
                              I thank GOD for keeping most of the pain away from me so far and I take that as I sign he wants me to spread joy and kindness to my fellow man. I cannot change what has happened to me or anyone who reads this. All I can do is try to pass on my love and support as we all journey through this MS Madness.
                              I think you may have summed up one of the reasons we see polar differences to your statement about "MS being the best thing"...etc. (in the interest of transparency I don't think it's a good thing.)

                              But laying that aside, you said that because of your lack of pain you see it as a sign from God to spread joy and kindness. So what about the person in excruciating pain? Are they supposed to take that as a sign from God or some message about what they aren't supposed to do? (rhetorical question alert )

                              I think one of the hardest things to deal with when MS does in fact "have you" (me) is that I am limited in what I can do for others. I, personally, hate the fact that MS has taken over my life to the point I have to think about myself. My MS affects so many different functions in my body, that by necessity I have to consider it (the MS) when doing what would/should be normal everyday activities. It turns one "inward" just getting the right meds at the right times, or moving the right way, or for the right amount of time during the course of 24 hours. From the time I wake up till the time I go to bed, I don't think more than a couple hours go by before I have to see to an MS issue. To be perfectly honest, I'm just tired of thinking about it, but to maintain a modicum of quality of life, I must.

                              I also hate having others have to do for me. I wish my husband didn't have to do grocery shopping, or laundry, or vacuum our rugs after working all week and keeping up with the outside of the house. I used to enjoy those things. I really, really, hate to bum rides to get to the dr's appts which seem to multiply like rabbits I am able to give back emotionally, spiritually, in a sense, but that too is limited to those who cross my path, but for many MS folks, there aren't that many people they come in contact with because they're basically homebound and live an isolated life. (I'm fortunate, I have family all close by, and with their help I am still able to be involved, socially, with people and entertain...but there are those who don't have the advantage of family down the block.)

                              So I totally see the point you were making in this thread, and I also totally see the point of those who disagreed.

                              One more thing, some folks assume that a good attitude is what's missing in those who don't consider MS a "best" thing. But the old argument of cause or causation plays heavily on this assumption.

                              Take your statement about pain, for instance. Do I have a good attitude due to lack of pain; do I have less pain because I have a good attitude; or is my attitude affected negatively by the pain I'm in? I guarantee each person will have a different take on that question.

                              "Walk a mile in my moccasins"... Native American proverb worth remembering...nobody really knows what another person's experience is.

                              Thanks for the interesting thread though, lots of opinions always makes for a good thread.

                              Comment


                                #30
                                Beautifully put, rdmc.

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