There is no guarantee: Okay, I lied there... - My MSAA Community

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There is no guarantee

RoyceNewton profile image
8 Replies

Okay, I lied there is one guarantee sort of. I can pretty safely guarantee everybody with Relapsing-Remitting ms (RRms) that this disease will progress and "YOU" my friend will get worse. IF YOU IGNORE IT. How much worse I can not say and if anybody tells "YOU" that they can. Just smile and move away from them quickly and never go near them again. The same is true for how quickly "YOU" may go downwards. I was told twenty years ago that I would be dead or in a wheelchair\home within twelve months. Either it is a miracle or I am really the third coming. Which I really doubt as of now I am at my standing desk typing "YOU" this letter after coming home from the gym. Now for the third coming, seriously, me. I very much doubt it. So do "YOU" see my point? Nobody but nobody knows our disease progression. There is very very limited accurate insight as to what this illness may or may not do to us.

So stop "WORRYING" it really does not have to be as bad as "YOU," think it might be. One caveat here (I did look it up and I think it fits caveat that is), if "YOU" make the choice to do nothing "YOU" are going to get worse. At what rate nobody knows, just that "YOU" my friend ARE going to get worse and when they find a really effective treatment for us, "YOU" will be either very poor,(having paid for it) or at the back of a very long line. As I said your choice, in everything, always.

Personally, I hated needles, I still do. I still did them, as they were the only treatment available back in the day. Now I can take tablets so I changed. Just because the perfect medicine or technique is not available today, is not a reason to wait and do nothing. We are all flooded with opinions and promises, everybody seems to have one. Being totally honest I do as well. I am not trying to sell you anything or making anybody a promise that if "YOU" just did, or took xyz your worries will go away.

No, I am only trying to pass on my experiences for what they are worth. This is a very doable illness. I do not begrudge "YOU" milking it for a little sympathy if that is what "YOU" want to do. It is a chronic lifelong incurable illness after all, but just know within yourself that this is doable, that "YOU' can "YOU" will "YOU are doing ms".there is no reason that I can think of not to. Trust me I have thought long and hard and often about my options. Alone in the dark late at night as my face shrieked at me, there is a reason why they call Trigeminal Neuralgia the "suicide disease", but it passes. "YOU" and I will come to terms with this illness, our losses real and perceived. We will carry on, we will take the next step in our journey. Learn what we have to, do what we need to do, and just "DO" ms in the best way that we can.

I think after all I do make you one guarantee. I guarantee "YOU" that if I can "YOU" can as well, for I am nobody special, no expert in anything. I just wake up each day and DO my ms, like "YOU"

Royce

ms in 2018 is a "DOABLE" illness. In 2020 who knows.

Bob Marley "three little birds" listen to the first line

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RoyceNewton profile image
RoyceNewton
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8 Replies
Kenu profile image
Kenu

Great post 👍🙏🐾. Ken 🎃

RoyceNewton profile image
RoyceNewton in reply to Kenu

Thanks

REDLIPS44 profile image
REDLIPS44

YOU did it once again, that was great, I've had RRMS for 19 years, the first 16 years nobody knew. the last 3 years it has taken my legs, I do PT and I use a walker 24/7. And like everyone else I hate this damn monster. But live goes on. Thank you

RoyceNewton profile image
RoyceNewton in reply to REDLIPS44

Thank you for your kind words.

DebbyLou profile image
DebbyLou

Bravo Royce! I am 67. I was diagnosed when I was 28. That = 39 years! I am a classic example of your guarantee.. Started out with optic neuritis which never returned, tingling and numbness in hands and feet, weakness on my left side, drop foot and fatigue, Too many UTIs to count and thusly developed a neurogenic (spastic) bladder. During this time I had 3 children, went to college, got my BSA in teaching, my MSA in teaching reading, taught for 19 years in the inner city (Detroit),, and didn't have to take a disability retirement until I seriously started to have too much pain and I couldn't get around my classroom with my walker (which I call my girlfriend).. I now use my girlfriend 24/7 unless I'm out with my daughter. Then I use my 3 wheeled scooter. Over the years I've been on DMTs. (Beta Seron, Avonex, Tysabri) Tried Ampira but quickly found I was allergic to it. Life with RRMS was indeed doable! My MS has progressed since I retired. Doc is finally saying she thinks I'm in SPMS now. I agree. Life marches on and MS keeps on progressing.

RoyceNewton profile image
RoyceNewton in reply to DebbyLou

wow, now that is a story. Nice to meet you.

Juliew19673 profile image
Juliew19673

As always Royce - excellent post!

RoyceNewton profile image
RoyceNewton

You, my dear are tooo kind

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