A new exciting week for us all. - My MSAA Community

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A new exciting week for us all.

RoyceNewton profile image
4 Replies

msERs, good day to YOU all. This post is planned to be mostly for YOU newbies so please bear with me if YOU have read it before.

As a newbie to the family there are several pieces of advice I will give YOU. Naturally YOU can ignore them or adjust them to suit YOU.

1. Protective underwear. DEPENDS is my favorite, flex fit preferably. Soiling yourself in public is generally frowned upon and YOU just got told that YOU are now chronically disabled. Why cause yourself more emotionally pain. I have a very close friend whose bladder released 20+ years ago in the grocery store. To this day she still will not go into some store alone. Recently I had an incident where it was only my DEPENDS that protected me from major embarrasement at a pizza shop.. Two things, I will not go back there again, and I held my head high, squared my shoulders and strode out of the store. No need to whimper out. Our companion will mess with YOU. LEARN this, accept this. COPE with this, and carry on. LEARN the most important thing, bend like BAMBOO, be flexible, find alternatives. Plan A then a PLAN B then a plan C if necessary. Do not just jump in the care THINK about what YOU are doing, where are the toilets, do I have my protective underwear on, do I have a plastic bag to put on the seat if need be, do I have an extra pair of depends. Yes it takes a little more work than it did last week, but being prepared pays off.

2. START a Disease Modifying Therapy (DMT) Do this yesterday if not the day before. It is that important. If your Neuroligist says wait and see, tell them NO. Get on a medicine. ms has never been cured naturally or by waiting and seeing. YOU do not wait and see about your broken leg, do you? Why are YOU waiting to see about your ms?

3. Stop smoking and drinking is not your friend either. No more to say and no excuses just DO IT.

4. start eating better. A heart healthy diet is good, I followed Swank when I first was diagnosed but have eased back over the years.

5. My favorite. EXERCISE, You will not regret it. Get into the habit. I am not saying climb everest, but crunches or sit ups in bed is a good start. Sit in a chair then get up, then sit again. There are websites that will explain correct form to you. If YOU find something really cool let us know, we might try it one day.

6. Find some humor and laugh. TOU have until YOU are 70 or 80 with this illness, have a laugh every know & again. Yes it is rather serious, but believe as a newbie today YOU really can make it an inconvenience certainly not a death sentence.

7. START LEARNING about ms. Know your ms and be ready to learn it all again tomorrow. Your Mental Nervous system (CNS) is rather large so it has a lot of places to mess with you. KNOW this EXPECT this and do not be surprised by it. The more YOU do this the less fear YOU will have because it is the unknown that is where the mischievous gremlin hides. The more YOU know the less you will be surprised, so LEARN and BE PREPARED.

ms today is a doable disease, 25 years ago maybe not so much, 25 years time tho knows. Everything YOU are doing now is for 25 years time. There is no cure but there is disability if YOU do nothing. YOU have Relapsing Remitting ms, make your life a good one and be sensible, take care of yourself as best YOU can.

Royce

20ish years and counting

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RoyceNewton profile image
RoyceNewton
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4 Replies
Royjr profile image
Royjr

Excellent post and well said.

RoyceNewton profile image
RoyceNewton in reply to Royjr

Thank you

dallas343 profile image
dallas343

Wonderful advice thank you

RoyceNewton profile image
RoyceNewton in reply to dallas343

Thank you very much

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