Royce's newbie guide part 7 of ​? - My MSAA Community

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Royce's newbie guide part 7 of ​?

RoyceNewton profile image
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My name is Royce, I have Relapsing Remitting Multiple Sclerosis. I have enjoyed this experience for 20 years, and my goal is to provide YOU, the newbie, with the type of help that I wish I had of had back in the day. Understand that I am not a DR a Therapist a writer or any other type of professional, I am just an ms lifer.

All CAPS do not mean I am yelling at YOU, merely that I am trying to make a point, and have not worked out how to tell YOU, that this is important.

I will tell YOU personal things about myself and people I have met in my ms travels, so please do not be shocked this is normally just to make a point, and to let YOU know that I have been where YOU are. Still am in reality, so let's get started.

Again another challenge, talking to spouse and others. I really am not an expert here. My spouse has ms, so talking to her is really not an issue. I carry myself with a certain disdain for others opinions, so talking about ms I just say what I need or want to. I never feel any desire to tell the world all my problems It is part of that " I am me this is how I am, take it or leave it attitude" I understand that it might appear a little hard and it has taken years of practice, but it is also my protective shield. I am not rude, I always open doors for ladies offer to help disabled people, offer aid when I can. Hmm, perhaps it is chivalrous, polite, dare I say gentlemanly. Because the world is rude and ugly I try to be pleasant.

I feel that if we are close we can talk. I might burden YOU with my fears, I might not. Say what YOU need to, do not make excuses for yourself to make others happy. Make them comfortable with YOU if You want to. Others feelings are not your responsibility.

There is no need to ever be rude, but always protect yourself as much as YOU can. YOU just took a big hit, but take your time to be patient with yourself and be KIND to yourself. Remember that the 90 year old is watching YOU, not judging just watching. NEVER judging.

Royce,

Never judging just helping

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RoyceNewton
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Elizt3 profile image
Elizt3

In terms of talking to others, I find that most do not understand. And, it makes it harder, I think, because I don't have visible symptoms. So many people tell me that "I look good", even on days when I'm feeling downright lousy. I feel like i'm whining if I tell anyone about leg and feet pain and spasticity, numbness/pain in my left hand, balance and weakness problems. Not sure how to handle this? I try to do everything people (at work, band boosters, flute choir, etc) would expect me to do. I think my symptoms are starting to catch up to me and I need to find a way to back off of responsibilities.

RoyceNewton profile image
RoyceNewton in reply to Elizt3

hmm I will have to think on this one, YOU raise good points.

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