My only relief from MS is when I sleep. In my dreams I almost never have MS. Everything is “normal” again. During my latest dream something different happened. Not only myself but also everyone I came in contact with had MS. It seemed so real. That dream got me thinking if everyone in the world had MS, would we treat the disease differently?
Would normal workdays be 4 hours instead of 8?
Would there be vending machines selling Avonex and Betaseron?
Would it be acceptable to be tired after only being awake for two hours?
Would everyone sprinkle Gilenya on their food like salt?
Would insurance companies consider MS medication as preventive treatment?
Would Tysabri have a mascot like Mickey Mouse in order to appeal to kids?
Would there be cheap over the counter MS drugs?
Would neurologist and optometrist be seen as more important than cardiologist?
Would the National MS Society receive funding from every country’s national budget?
Would medical marijuana be legal?
Would 20/20 vision be atypical and not the norm?
Would there be IV steroid treatment centers in every neighborhood?
Would every building be handicap accessible?
Would Novantrone be available in convenience stores?
Would we have liquid forms of Copaxone and Rebif instead of injections?
If every billionaire, prince, king and president had MS would we have found a cure by now?
Just asking.
I’m learning quite a bit about how others with MS are coping and am looking forward to talking with others and reading your comments. Thank u.
Janine, thanks. I hope you keep coming back. I release new posts on Tuesdays and thanks for helping out Jill.
Hi Nicole,
Thanks for the thought provoking article, I dream a lot and don’t recall any dreams in which I had MS. Maybe that’s why I like sleeping so much:) also, I live in Orlando so maybe I can talk to Mickeys’ agent about becoming a spokesman for us but don’t hold your breath. Now that I think of it I guess that my sleep apnea is a gift since it enables me to experience deep (REM) sleep. Sometimes just considering Utopia is a good thing yet I’m staying pretty focused on reality and trying to stay ahead of my symptoms. I have to say that my radical change of diet has helped me feel like a different person, even my legs with neurapathy are feeling better/stronger.
My hope is that others find ways to get rest and even dream when they sleep. Whatever we can do to “keep it positive” is worth the effort because we all know that sometimes this disease just sucks! Anyhow, thanks again for all your efforts and for sharing your thoughts and dreams with us. I’m just saying…. 🙂
Tim
Tim,
Yeah, that sounds great. I mean talking to Mickey. I snore I wonder If I have sleep apnea? We all need REM, right?
Nicole, I just want to say, I always look forward to reading your perspective! I have sifted, read, and studied all I could since being diagnosed in February. Yours is the only MS blog I go back to faithfully! =)
As for this dream of yours, I totally get it, a sad but true reality of our society. My hope is that with some celebrities coming forth, (such as Osbourne and Romney), along with the rest of us fighting towards better meds, treatments, and even cures, there will be a surge in not only funding, but education and understanding. Maybe we will see these improvements begin to happen sooner than later.
Take care Nicole, and I wish you the best of everything! God Bless you and keep spreading your encouragement and understanding.
Monica,
Thanks what an awesome compliment. I aim to help us all. Thanks for coming back. As you probably know I release new posts on Tuesdays!
HOW DO U STAY STRONG,HAVE FAITH, WHEN UR FAMILY & FRIENDS MAKE U FEEL SO BAD HURT STRESSED & UR OLDER KIDS DON’T EVEN THINK TWICE ABOUT WHAT UR GOING THRU, & THE YOUNGEST CARES SO MUCH & SHE LOSES SOOOOO MUCH,FOR THE MOST PART I HIDE HOW I FEEL, AS I WANT THEM TO B KIDS & LIVE LOVE LAUGH, BUT MORE & MORE THESE DAYS MS IS WINNING, & I JUST CAN’T B SUPER WOMEN,SINGLE PARENT, W/4 KIDS, & MY 75 yr. MOM W DAMENICHIA W MUCH NEED SUPER VISION, WE HAVE & R GOING THRU SO MUCH !!SO FAST!!! LATLEY MY THOUGHTS R SO BAD, I JUST WANT TO GIVE UP !! BUT I GET TO A RADIO OR I POD & I MADE A KEEP UR HEAD UP CD OF MY OWN FAVORITE SONGS, ALL W UP MUSIC, AS I HAVE BEEN FINDING MAKE COPY’S LOAD IT,TO WHAT EVER CAN PLAY IT, & AS BAD AS IT IS THAT DAY FIGHT IT GET IT PLAYING,DO NOTHING ELSE,TIL UR ABLE TO GET INTO UR SONGS IT CAN HELP SO MUCH W UR EMTIONS !!! DO URSELF UP AS UR GOING OUT ON UR FIRST DATE, CONCERT,DANCINING, WHEN UR OWN LIFE WAS AT THE HAPPIEST TIME, BECAUSE IF U DON’T FIGHT THE HORRIABLE FEELINGS UPS DOWNS,IT WILL WIN ! IT WILL CONSUM U !!! ONLY WE WITH MS CAN UNDERSTAND ANY OF WHAT IT CAN DO DOES & WHAT’S TO CUM!!! SO WETHER UR IN STILITOES OR A WHEELCHAIR,YOUNG TO OLDER, U STILL FEEL U,AT THIS POINT WHAT DO U HAVE TO LOSE, MAKE THAT CD ,LISTEN,GET READY UPED, TO FEEL BETTER !!!!
HOW DO U FIGHT SOMETHING U CAN’T CONTROL OR WIN, HOW DO U STOP FEELING SO BAD BECAUSE MY YOUNGEST 10 NEXT (14 SHE MAKES ME FEEL LIKE BLA BLA HERE WE GO)AS I DEVOTED EVERY SECOND TO HER, WHILE MY 10 YR OLD IS JIPPED AS DURING THAT PREGNACY I STARTED MS LIFE, & SHE DOESN’T HAVE ALL OF ME, IM TIRED,HOW DO U MAKE UR FAMILY UNDERSTAND ALL THE MEDS UR ON & NOT THROW U AWAY & LOOK AT U WHEN EVER UR AROUND THEM & THEN KNOW ALL THEY DO IS SAY UR ON DRUGS CUS THE TINGALING IS DRIVING U NUTS,UR JITTERY,OR U SLUR @ TIMES CUS OF A PREVIOUSLY SMALL STROKE, HOW DO U MAKE HELP ANYONE UNDERSTAND ONE DAY UR IN STILETTOS WALKING GREAT TO THE NEXT DAY UR BACK IN A BRACE,THIS FAMILY IS MY X’s SIDE, AS ALL KIDS HAD A MILLION SLEEP OVER’s TO NEVER BEING ABLE TO UNDERSTAND HOW THEY CAN THROW MY KIDS AWAY AS IT SADDENS MY DAUGHTERS,as me, CUS IM ON DRUGS,AS THEY ASSUM & SAY THERE’S NO NEED FOR ALL THOSE MEDS,AS MY INSIDES R FAILING,TIREDNESS IS A HUGE STRUGGLE TO FIGHT!! AS I KNOW IF I DON’T FIGHT MS WILL WIN SOONER THAN LATER, JUST SAYING
Lucy, thanks for helping out.
Cont….. My story is soooo long I wish I could tell everything. Before I was dx it took 20 + yrs to figure it out….. I need advice please if u can…. Thank yoj jill
Well. Jill, it took them almost ten years before I was dx. It’s frustrating when u don’t understand why u can’t walk too good and battling breast cancer at the same time, was very challenging. But I try to keep the faith and stay positive.
Jill, I’m sorry it took me so long to answer you. I’m so sorry you are having a rough time. It sounds like you need to change doctors for sure. And maybe see a head doc like me. That’s helped me a lot. It’s a great sign that you reached out. You just have to keep doing the work. But listen, I’m no shrink, just a fellow MSer! I will you the strength you’ll need to keep moving forward in peace.
Im so tired, and getting sicker, and have to keep explaining myself, to my general Dr. about me!! Im treated like a drug addict…..
Well I have had enough. Tommorrow is my appt., and I dont even want to go. Im on pain
Patches, and I dont shower like I should, because, they will either come off from sweating, or showering!! I cant stand feeling bad. My
Hmmmmmmmm…interesting topic…I don’t recall ever dreaming about MS…I like the way you think! 🙂
Brenda. Okay I believe you. 🙂
Well played Nicole..u might need to put your Just Asking to music. Myself I cant wait until the day Rebif comes in a liquid forms. I still dont like injecting myself.
Michael, I’ll never miss that. I’m on Gilenya now
I’ve never really thought about it like that, but that is so true.
Paula,
Oh the things that cross this mined of mine
I am so glad you find your dreams surprising and pleasant. I know one MSer who wakes up depressed after a night of being able to run, dance, walk etc… I much prefer your attitude of enjoying those moments. Often I have dreams where Mr Subconcious has me hobbling with a cane, usually ‘running’ to catch a plane or similar. I much prefer the ones where I am my ‘old’ self. Funny thing – the colors in my dreams seem more vibrant these days – perhaps the drugs more than the disease?
Ian. In my case it’s definitely the drugs!
Brilliant. Bless you for sharing this.
The entire world does have what we have. Corporeal things stop working, on THEIR timetable, not ours. The environment (too hot, too cold) causes distress. Random stuff in the world causes our immune systems to go wacko and start chewing on us instead of The Bad Guys. Some people around us show sympathy; some just want us to “buck up,” some just don’t understand… but it’s gonna happen to all of them, too, whether they want it or not.
For most people, it’s called aging. We just get… a preview. But what happens to us is gonna happen to them… just with a different label (“getting old”).
Which also isn’t “curable.”
Perhaps the non-M.S.-equipped should look to us as a foretaste of their own futures, and for guidance in how to meet these changes with courage and compassion; and should remember, as they provide care for us (or too frequently don’t,, because it’s too expensive or too weird or whatever), that “What goes around, comes around.” Or, in other words, “Payback is a bitch.”
Robert, I really never thought about it like that, good to hear from ya! They did always tell me MS ages you.
Robert, this is how I think of my MS too. It’s not that I have symptoms nobody else has ever had. I just have them sooner and occasionaly more severely. When I first described memory issues to my step-mom, she said, “Oh you have your dad’s ‘sometimers,’ as in some times he remembers.” Tired? When I say this to a single mom friend, I can see understanding in her eyes. We all get tired, The when and how tired vary greatly.
As I listen to descriptions of PTSD for war vets, I think of all those with lesions having the same effects,
I don’t think what we have are unique symptoms to MS. Since the world already tries to treat all of our symptoms, I’m not sure things would be terribly different.
I too look forward to sleep, because things are no longer painful and weird. Huuummm if the whole world had MS???? I would feel much less alone. People would not be doing everything so fast and there would be mandated rest/nap times, that would be so awesome if the whole world would just slow the heck down. I wonder about the people with cancer and other diseases? How do they feel? I also think it is weird because I look normal and I don’t tell people what is happening to me, only a few that are close really get it and are understanding. I’m scared other moms might think I am less capable so it makes me try so hard with my kids….
thank you for being a voice and an example, i’m not ever sure why we are on this “ms” path, but I am glad to have you hear. I bet in heaven nobody is sick.
Hugs and light your way.
Olivia
Olivia.
I remember those day when it wasn’t blatantly obvious that something was wrong with me. Enjoy it. Thank you for continuing to read.
Wow!! Very powerful and thought provoking. Certainly paints a drastically different picture in comparison to our current world.
It does.
Wow Nicole,
” Just asking” is brilliant.
if only our world worked the way you described….and so much truth to what you shared with all of us.
thank you so much for your time and compassion each week.
it means so much to me and I know to many others, as well.
feel good,
Liz M.
Liz,
Thank you for continuing to come back!
Great ideas, Nicole. I guess we all know the answers! BTW, in my dreams, I also never have MS! I wish dreams came true!
Peace,
Muff
Muff, I always find it surprising but pleasant.
Wow! Absolutley thought invoking topic..Wouldn’t it wonderful? There would be an actual race to find a cure. Life would be so much diffferent for all of us wouldn’t? I think ou shold send your post & responses to the MS Society & any other outlet that may have some kind of influence (for lack of any other term) on speeding up the “find a cure process”. Great topic Nicole!
Kim,
I do write for the MS society, so maybe I can make that happen!
Even if just men had MS there would be a cure by now. Just saying.
Lisa, Cute, but just may be true!
Would we bother to procreate?
I ask this because I have decided not to after my diagnoses.
This may be genetic disease, and I cannot physically/mentally/emotionally care for a child any longer. It simply would not be fair.
I am not saying people with MS are not fit for parenting.
I am saying I would not be, and there are some people with MS that also would not be fit for parenting (with or without a partner).
Blanket the entire world with MS and we have a large percentage of the population that is in all reality is unable to care for a child, much less themselves.
Of course this is to say that MS could effectively cause extinction.
Very good post Miss Nicole.
Anony, Thanks for reading. You know it was just one of the many strange thought that fly trough this head of mine/