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Old 02-21-2012, 08:19 AM #1
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Quote:
Originally Posted by concernedms View Post

How do you deal with the anticipation of what may follow- how much longer will it be before I'm in extreme pain/too weak to walk/unable to work etc??
None of us EVER know. You learn to live with the uncertainty of it all. Will tomorrow be the day I go blind? cant walk? cant balance? cant bathe myself? cant feed my family? That day maybe today, and that day may never come.

Greater than 80% of MS patients NEVER end up in a wheel chair full time. Many of us use a cane, rollator or walker to get around during attacks, but once its over, the rollator starts collecting dust again.

You will learn to set up your shower so that you are almost fall proof. Rails, a seat, learning to prop your feet against the side to get leverage when you close your eyes to shampoo. Turn down the heat so you take a warm not hot shower, get shampoo/conditioner in one, so you only have ONE step to wash your hair, soap on a rope so you dont drop it, rubber strips to help you grip the bottom, a thick mat outside the shower with a rubber backing so it wont slip. Sit on the toilet to dry off instead of standing and rubbing down. Ride the scooters in the store to save energy so you can still have enough energy to fix a meal when you get home. Folks give you dirty looks when you park in the handicap spot, but if it means saving enough energy to bathe the kids, who cares what they think?

its a learning process and you wont know which MS patient YOU are going to be, till you become it. Its like a fingerprint. What makes you swoon, and sweaty, may not bug me at all, but what makes me tip over and need 3 days to recover may be a breeze for you. it all depends on lesion placement.

Start eating clean NOW. Get used to a clean diet BEFORE you feel forced. The more chemicals you remove from your diet the better off you will be. Want mac and cheese? dont open a box, make it! Many go Gluten Free and their symptoms clear up. Others go on the Swank diet and feel great. Other go with the Makers diet removing all chemicals and do great. You have no more excuses to continue to abuse your body. it has put you on notice that it needs better fuel, bigger rest periods, better maintenance, and more comfort care. STart being really good to yourself.

Please dont be surprised when you start to see friends become more and more distant. They are busy. They have full lives, and sometimes hearing us say "we just cant" or "i just dont feel well" becomes old to them. They see us and how great we look (you will hear that A LOT! "but you look so good!") and think to themselves "she just needs to try harder" and then once that seed is planted will start to think you are lazy or looking for excuses and start to get busy on you. "sorry, cant make it, we are busy that weekend." and so it begins. Dont worry, when the rest are done peeling away, you will find out who your REAL friends are. The ones that keep coming back at ya. LET THEM HELP! How upset would you be if a friend needed help and they wouldnt let you try?

Hang in there. come back and let us know.
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Old 02-21-2012, 12:32 PM #2
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Hello Concerned. So glad you joined us.

What we anticipate in our MS progression is based on what others have suffered, but we are all individuals, even with MS. We will not all end up in a wheel chair, in a lot of pain, have eye problems, etc.... Fatigue seems to be pretty usual for all of us, also some numbness, pins and needles & spasticity (tightness of muscles)

Just as the DMDS don't work on all of us, because we have different types of MS, with different causes and triggers.

Hang with us and we will try to keep you informed. supported and loved.
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Old 02-21-2012, 03:32 PM #3
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Great posts...

and if you are diagnosed and you tell people about it, don't be surprised to hear of people that they know with MS who are in wheelchairs, can't walk, died, yet "you look normal" with a sideways glance at you.
People try to make you feel okay about your diagnosis...let it roll off your back. You know what you are dealing with, no matter how "good" you look.

That's why this place is priceless...we all "get it"...we let each other cry, scream, vent, and help dry the tears, even if it is virtual...I thank God daily for the friends here. Don't know if I could have gotten through it so far without them.
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Old 02-21-2012, 06:05 PM #4
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no one ever can predict the future whether they have MS or are healthy.
that's why i try to live in the now and not get upset over the maybe's.

i used to live in CO and was dx'd in '03. my neuro thought i'd be in a wheelchair at 5 yrs out. well, i'm 9 yrs out and still walk with a cane and drive my car. i'm independent. i still have to deal with things but i'm doing well.

try not to live for tomorrow but for today. i know that sounds hokey but you can only deal with what's facing you today. if things change try to accommodate to deal with changes. if you have a certain fear make a plan to face the fear. that will give you more control. around here we like to say that knowledge is power. and that gives me control over my life.
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