MS Uncertainty

[korra51]

How do you all deal with the uncertainty of this illness? I do not understand how to grapple dealing with unknown future ahead of me or how the MS could progress? Do any of you have any advice or wise words for how you manage dealing with these daily issues of uncertainty?

[ElliotB]

Welcome!

It is not easy certainly, and will take some time to do and get used to, but learn to take one day at a time.

Keep this in mind...
“Worry is like a rocking chair: it gives you something to do but never gets you anywhere”
Erma Bombeck

[korra51]

Does anyone have any suggestions or ideas for how they deal with this uncertainty? Any coping mechanisms or nuanced ways to look at MS?

[1eye]

Welcome!

It is not easy certainly, and will take some time to do and get used to, but learn to take one day at a time.

Keep this in mind...
“Worry is like a rocking chair: it gives you something to do but never gets you anywhere”
Erma Bombeck

I used to hurt myself all the time because some facility I had (balance, walking, etc.) suddenly disappeared. Until you have somehow settled into some kind of stability, uncertainty will be the name of the game. I am still dizzy, still have drop-foot, still have most physical disabilities, occasional double-vision, and am still sensitive to heat.

Try to assess which are your most dangerous symptoms, and take it very very slow whenever using a work-around that you are not fully conversant with yet. Don't tilt a wheelchair backwards without the tilt-protectors (or you might smash your skull).

Don't make any assumptions about your speed or agility. A lot of my bumps and accidents have been because I just assumed I could do something. I have learned to be extra slow on purpose. Unfortunately it takes practice and some hard knocks.

Some things creep up on you. I was in a fairly tepid bathtub and couldn't get back out. Wrenched my arm on grab-bars. If immobilized, and not in immediate trouble, wait for help.

Sometimes your own desire to undo the trouble yourself without help, independently, can be your worst enemy.

Heat can sap everything out of you and leave you limp like a rag doll. Watch out for it.

You have a lifetime of learning to sometimes have to undo. It takes time. Go slow. Be careful.

[cheerleader]

Does anyone have any suggestions or ideas for how they deal with this uncertainty? Any coping mechanisms or nuanced ways to look at MS?

Hey korra--
Welcome. Being newly diagnosed is tough---you're right, uncertainty can be really hard. Hang in there!
One thing my husband has learned, now almost 9 yrs. past diagnosis--is that worrying about progression didn't change anything. Elliot B is right on that! So you might as well not lose sleep doing it.

My husband loves and recommends the book "You are the Placebo"---about how your state of mind can really affect how you do and feel. He's stayed positive, no MS progression. He's been really fortunate. Still jogging at age 52.

MS is variable, and there's no way to know how you will fare--- 1eye is right about knowing your weaknesses and vulnerabilities and not pushing yourself too far.
Take care of yourself, eat well, move as much as you can. Let us know how you're doing-
cheer