Okay twenty plus years in this game. The game of Relapsing Remitting ms (RRms). It is a game, I refuse to take it too seriously. Nobody gets cured, nobody gets out of it alive. It is a game, rather silly, and I certainly wish that I or “YOU” didn’t have to play, but we are Homo Sapiens (HS), and HS get to play this game. How well as individuals we play this game is up to each of us.
I personally tend to take this half or maybe less seriously. I have learned over my years that any number of different things can break, never to work again, equally any number of things can break but come back less effective than before but still there. To me this is a game. A “what if game”, nothing to serious just what happens. I can and do everything possible to slow and repair what damage may occur, but I never get my hopes up too much. I know the prognosis, this is a chronic, debilitating condition, but so is life. I do not get out of that firm and sprightly and alive. I am a HS and that is a condition of my life. I can and will go kicking and screaming into my long goodnight. I will look back and say I lived a good life no matter what was thrown at me. Out of curiosity, why do “YOU” not do that as well? Enjoy every moment that “YOU” can! Laugh at people’s silliness and go into your long goodnight with a smile on your face and laughter in your belly. None of us get out of this life alive and cured. We all have ms of some sort, so live your life well. Enjoy all that is around “YOU”, laugh, smirk, chuckle, smile when ever wherever “YOU” can. Breathe deeply and enjoy the silliness of everything. Be happy in making somebody else smile, in giving comfort to a stranger. I hurt, I know “YOU” do but together hand in hand we will get through. We will not win this game, but there is never a reason not to play it for as long as we can and as well as we can.
“YOU” are never alone my friend. For as long as I can I will be here with “YOU”. “YOU” are not alone, merely a little lonely, but “YOU” are never alone. Hang in there your loneliness will become easier to cope with.
Royce
Your FRIEND
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RoyceNewton
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I think that this is well said 👍. We all get dealt with a different hand if cards and it’s how we play them that makes us happy 😊. We can except it and learn to move on or dwell in the what if’s. I have always been a bit of a jokester and that is the way I deal with this. Yes, it is serious, but I can’t change that so as you have said, I just try to live life at it’s fullest 👍. 😉🙏. Ken 🐾🐾🤪
I agree! Early on, when I was giving a presentation to a group of Academic Advisors at a National convention, and as I turned to make my point, one side of my buttocks went into violent spasms, I knew this was a disease I could laugh at, and about!
And I have, for 35+ years....it hasn't all been fun and games, but you have to admit, some things are just funny!
Recently I posted the long, long history of RRMS I have had since I was 27. Suddenly in my 70s that started to change. Now it is PMS with a vengeance. I have learned some things I'd like to share. And RoyceNewton is right, live life to the fullest, absolute fullest. It is an imperative!!
I posted that history for a reason: there are many people like me that take forever, thank god, to get to PMS and SPMS from RRMS. Doctors do not look at RRMS with a discerning eye to the future and if a person has long periods of remission, they do try to make little of it. They have no choice, really. I had never heard of "progressive MS" until this past year. I am still in shock.
I think in the past the numbers of MS patients relative to our USA pop was too small to be of much interest. The US pop is about 333.000,000 and we number maybe 3, 000, 000. That is 0.009%. Why would any research group or pharmaceutical company be the slightest bit interested? The fact that some are is fantastically good for us.
But it still begs the question: Why don't our docs talk to us about our possible futures? Certainly most of us really need to know. I can only conclude most people don't live long enough to move from one type of MS to another. I know I have outlived some 60% of my same-age cohort and outlived most of my POW childhood cohort by maybe 90%. (That number is a guess based on how I can't find them anymore.)
I agree wholeheartedly and try to maintain that same attitude. So many friends, er, acquaintances, constantly ask me why I am always smiling and why I never complain. My response ~ “what good would it do if I complained?”
Yep! I too have had it at least as long as you? If I could figure it out? I was diagnosed when I was 30 something, and I'm ???, you get the point. I always tried to simply ignore it, yet while doing everything I could to stop it. All the DMT's, regardless of how sick I got from them and all the other meds. I eventually learned to live with the flue like symptoms for 2+ years, again trying to ignore the inconvenience of it all. You have to live your life, and make the best of it. BUT, I also never gave up hope! It's been 5 - 6 years since my last relapse. Doesn't mean I'm symptom free. Hardly, but I've learned to live with all my "gifts" from this disease. My neurologist is not surprised that I've stopped having relapses after so many years, and told me that we can grow out of it! Well I'm glad! He apparently has or has heard of other patients who have done the same! So, keep a positive attitude. And never give up! Like the old photo which hung on my office wall for decades, now hanging in my home, which for the life of me, I can't figure out how to insert it here in this site to show you..., the huge cartoon bird, towering amongst, and as big as Chicago's skyscrapers, with an equally huge frog in the bird's beaks, legs dangling from it, head already too far in the bird's mouth to be seen,... but the frog's arms still reaching out strangling the bird's neck so as to not allow the bird to swallow the frog.
TITLE:
DON'T EVER GIVE UP
But as important, enjoy life! So what you have to...., don't ever feel sorry for yourself, but keep on pushing your limits! I got to the point where I did essentially nothing. Then amongst other things, I started walking (with a cane, or fall non-stop). But, I got up to the goal in my mind, 10K steps a day. Day after day. With time it became easy? After 5-6 years of using the cane, I set it down. Sure I fell a few times. But, I'm still doing a minimum of 10K a day!. Now without a cane! Spring is here, and the world is reawakening from winter. Enjoy it! Yes, I'm sure I'll still have all those once horrifying things happen to me again, and again. But, I know how to handle them. Can't stop them, but no big deal...simply.....! I know how to deal with them all. Did them all many times before, will do them again. So what, don't let it stop you! Hey, I think it's getting warm enough to leave without the coat! Supposed to get significant snow tonight?...Really???..., good thing I didn't put away the last snow shovel yet! Enjoy it!
Good post. I think you are right on track. Attitude makes all the difference in the world on how you feel and how life treats you. If you have a positive attitude then what life throws at you, you can handle it. If you have a bad or downtrodden attitude then when life hits you with unpleasant things you just dig deeper into that hole.
Keep up these informative posts, they are so good at reminding us that we aren't the only souls that have MS and there is a way of living with it with a smile.
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