More and more research is showing the positive impact of lifestyle improvements — to diet, exercise, sleep, etc. — on overall health, longevity and even MS. With New Year’s resolution season in full swing, are you making any lifestyle changes and why? Are you setting goals? Do you plan to track the results?
Thanks in advance for sharing your experience — it might help or motivate others.
Hi Kris, I have had a lifestyle improvement that is surprising me. I have been rediagnosed with spms the type that has no treatment, so it means I have no exaserbations I just get worse. So the doc took me off betaseron and said I dont have to see him unless or until I need him. And my wellbeing is remarkable, sure I am doing less remembering less and generally sliding into paying attention to see if I am becoming dangerous to myself and my partner, but I feel great per se, no interaction with the insurance company except to mail in my premium, no copay soaking up my social security no medical tests and no trips to the neurologist and even though there is a general weakness physically and mentally I am so so so so happy I am no longer in the system, the medical/insurance/government system.
I never fully realized what a burden they are, all of them, having always to prove myself, I am in need, I cant do this, I cant afford that, I am unable . Even people arrested have it better, they are presumed innocent until proven guilty, with us it is the other way around. No one believes us most of the time except when there is a physical manifestation,. Yeah, I burn almost everything except when I undercook it, but my attitude is wonderful, like let out of prison,Even though the house is not clean and l rest more than half the day and sit much of the rest of the day. My mind is only affected by ms and not seven million drugs(see I normally exagerate, that has not changed) and I dont remember what I did yesterday. I guess I always measured every thing by the pain level, as long as I was not in pain I considered myself okay.
It has taken three years of no drugs and no tests and no neuro to see how free I feel, yeah, I eat junk most of the time or charcoal, ha ha, i seem to have some more autonomy, I almost feel young, not physically for sure, but mentally light and fluffy. I watch myself daily to see how close I have become to super duper progressive ms and notice the slipping and sliding but my 'heart' feels great. It is all okay, except of course if I live to 117 like the current oldest person on the planet, I dont know if I want another thirty five years of living with ms especially along with old age, my attitude is great, I dont have to live by the calendar, or the money management strain of drugs. Although i am dumber than I was when i was a teenager my brain feels young.
The burden of the system has been lifted, I have been in the system more than twenty five years of being diagnosed, and enjoy now the freedom I forgot. I am happy I dont have a treatable form of progressive ms, it is a lifestyle change I embrace.
It makes me cognizant how awful the medical system.government healthcare, insurance monopoly are. Worse than being a prisoner in my own skin, and I thought it was helping me.
Instead of mommy daddy teacher preacher and all the other people telling me who I am supposee to be I am me, and it has taken me years to find my own skin, my own comfort, my own home, and maybe it is just old age that has taught me to be comfortable with me, no matter what anyone else thinks of me. Instead of believing they were better than me. I guess I am rambling now. Surely not what you expected to hear, I am often a contrarian. Or maybe I have paid enough attention to myself, my mental physical and emotional well being that i have reached a level of comfort, but nah, I dont have to see an md, dont have to take a drug and that is liberating for me, now I just wish i could drive and manage money, and dance and cook and ski and read and do anything except wait. giggle.
So sorry Miss Maria;
You are at a place I arrived in only five years. I am So sorry for you. We have done All we know and Still It progresses. You seem to have a great Internal strength already built up and you are equipped to deal with what comes next.
your courage is an inspiration.
I am truly sorry that your MS has gotten to the point that is beyond science ccurrently.
but also congrats on being free from the system.
i hope I can be as strong as you are when I've been fighting MS as long as you have.
Sincerely I tip my hat to you sister,
So sorry Jason. You always move my heart. My area fire dept., truck 33, gives me a salute also. only because they have had to scoop me up a couple times. Thank you for All you’ve done and continue to do.
right back at you, sister.
you & I belong to two families that have shaped our lives.
I salute you!
Slow and steady
Slower and shaky...
One step at a time
dkw, Thank you for your kind thoughts. Please do not feel sorry for me. Twenty two years ago my partner retired early and we moved to Missouri so we had some money and could spend some quality time together because we both knew for sure that I was dying, I am still here, and dont have to go to the doctor, that is wonderful. I am sick of doctors more than I am sick of ms. As long as I am not in pain I am wonderful.
Jason, The best revenge is to live well. I hope I give you the courage to grab every bit of better out of this life. Be greedy about the beauty in life, be greedy about the funny in life, be greedy about right now, and how you perceive you can make it better for yourself. There is only right now, RIGHT NOW look around your world, throw out what does not make it beautiful, throw out what makes it ugly, let your mind look for the best. I guess Kris i did in fact make a lifestyle change, I stopped looking and focusing on the depressing side of life, like hunting for buried treasure. If you are religious, count your blessings, if you are not, look for the beauty, for every piece of ugly there is a piece of beauty.
I have had my share of ugly, now I am grabbing all that is better. Love is worth it all, find someone or something to love, find something to be passionate about, REVENGE about life and the junky hand you dont like that you got. Get even, make your life the best it can be, go for perfection. Be very selfish for yourself, dont take any guff from anyone, kiss off is what I say, get lost too, I say kiss off a lot, bugg off too, get ANGRY, dont hurt anyone, grab the beauty, CHOOSE to be happy, fuss it, ha ha. BE IN THE MOMENT, it is all we have, RIGHT NOW this minute, what can you do to make it better for you, can you see? can you smell, can you walk, can you talk, can you feed yourself, all the little things we took for granted yesterday, relish today, right now. If you are in pain, stare at it with your minds eye, you have heard how I work to define and describe it over and over again, dont run away from it. If you are not in pain, smile and be happy that you are not feeling worse, giggle, things can always get worse.
Be very selfish about yourself and all those things that make life better living with ms. All those things your were taught not to do. Put you first, take care of you first, be greedy about the beauty in life, spend your days grabbing the beauty to fill your heart with joy, forgive all the creeps who have caused you pain because carrying the garbage is too heavy, you dont have to be friends with them, you dont have to talk with them, you dont even have to be nice to them, just dump the venom, it just poisons the picture.
And for sure, do not be afraid to love yourself and someone else, the passion of love with abandon is my favorite, yeah loss sucks big time, but to know that love, that passion is worth all the pain on the planet, and to lose that love and passion is worse than death but the joy is lasting and the pain subsides.
You may say I have courage, I dont know about that, sixty seconds at a time, right now, getting throught right now, that is success, make your right now good for you, no one is gonna do it for you, and love you and who you are and do whatever you need to do to live with you and enjoy living with you.
your words speak straight to my heart!
I agree with you completely, but for right now my live in the moment is consumed my the progression to back surgery #3....
I have an appointment with the neurosurgeon next week (I got the results from my latest MRI on January 2. The same disk is herniated again).
I will make you a deal, you keep doing what you are doing and after recovery iI will do exactly what your advice says.
This past year has been a tough transition going from being a firefighter to being someone who can only sit here listening to my crews doing the job I want to do. I am learning to live vicariously through my son, brother, nephew, nephew in law, cousin, and friends who are responding to emergencys. I absolutely love that any time (day or night) my ladder truck, engine, rescue or squad come past my house they tap the air horn. To me it's my crews saying "hey Jay we are thinking about you!" The funny thing is they even do it if I'm at work. It pisses off my wife but oh well. It puts a smile on my face even if I'm in pain.
Happiness comes in different forms, the trick is finding your particular version of happiness.
Transition to something different is just part of the journey with MS. Sometimes as soon as we get use to something new, it changes again.
keep smiling and laughing no matter what... I'm getting there slowly, but I'm getting there.
Jason, it is great to hear that they can fix your disc, do you know how to waltz?
I can say that yes I know how to waltz, well I use to... its been a few years since I've tied. At my niece's wedding was the last time I tried. The leg was just starting to cause me grief, so it wasn't as graceful as I would have liked it to be. That was the last time I've tried
So, Jason, when you get the back fixed you can do some stepping,, one foot at a time, giggle.
For the longest time I would feel sorry for myself and all the things I use to do that i was no longer able to do, poor me. Now I have changed my tune to celebrating what I use to do and did well. Like I am a retired banker and I remember doing my job well, while now I cant always balance my checkbook or gave two bill to the clerk to find out I gave two twenties for an eighteen dollar total, and lucky for me one clerk was honest and gave me back a twenty plus the change for the other twenty, at least now i know where all my money went.
I was even remembering I use to dance a lot, thinking all the way to when we were excited that we learned how to do the Charleston, and the Twist. Mind you I wasnt a great dancer but I enjoyed dancing a lot, jumping rope too.
Often it has been said, it is better to have loved and lost, than never to have loved at all, well, sitting remembering all the things I did and loved doing is a pleasure now, a pleasure learning new things and working at perfecting them, like coloring within the lines a first major challenge, giggle.