Post 633 Social distancing, what a jo... - My MSAA Community

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Post 633 Social distancing, what a joke 21 Apr

RoyceNewton profile image
10 Replies

G’day family. You are all well I hope as always. I guess I must be odd. I do n to understand this social distancing problem that so many people seem to have. I like “YOU” have ms. I live social distancing. I have lived it for over twenty years. This is nothing new, it is my everyday life. I avoid people as a matter of course (habit). The last thing I want to do is bump into anybody anywhere. As much as for them as for me. I do not want to lose my balance and fall down. I am told that when I walk, I look like I am drunk and people avoid me. My speech is far from the clearest so I usually stand back and speak a little louder. I detest eating in public and would rather get take out or delivery and it at home. I do not have to explain dribbling or be embarrassed by the mess I made on the floor. I just have to clean it up.

I have ms, I am disabled, people avoid me. If I want to talk to somebody, I call them. This is normal I do not go to them. I guess now evybodvy gets to live my life. I wonder if it will change them. I am pretty sure it will not change me. Perhaps it will make me stronger in my belief in me. Give me an extra incentive to believe that I have me and the very few that are close to me. Perhaps it will remind me that “YOU” and I are important and that we have to take care of ourselves, because the human being that we can truly rely on lives between our ears. If we have to rely on that person, we should do everything that we can to help that person. Give them every tool that exists to make their life as easy as we can. If “YOU” like me are going to live for years and years with this disease, should we not do everything that we can to make life easier on ourselves?

ms is not for the faint of heart, the weak. It requires a degree of strength. A belief and a caring for yourself. We all will have the illness for years. Start today and find ways that “YOU” can start helping yourself. Do not rely on others to do it all for “YOU”, because they will not. No, my Sister, Brother “YOU” have to make that decision to live well with this illness. Crying and asking why at first is okay, but eventually “YOU” have to face facts. ms will not go away. It is part of our life and it is up to us to come to terms with it and LIVE.

If, right now “YOU” can get your chosen disease Modifying Therapy (DMT), take a less effective one that “YOU” can get. Ocrevus is my suggested DMT (based on its strength), but if “YOU” can get it perhaps a weaker self administered option might be available. Go back to Ocrevus when the world gets back to normal and it is safer to go into infusion centres. Think, adapt and look after yourself. Be the ms success story that “YOU” are meant to be. This is a hiccup in everyday life. ms will give these to “YOU” in abundance over the years. This is new but “YOU” can handle this with a smile, a shrug of your shoulders and a step forward

Royce (your ms writer)

you like me have ms, we can handle this

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RoyceNewton profile image
RoyceNewton
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10 Replies
carolek572 profile image
carolek572CommunityAmbassador

I, like you, prefer social distancing and I have been doing so for many years. I don't like to be the center of attention, and I am fairly conscious of my gait and balance. The more that I concentrate of my walking, the more I think that I am prone to tripping. I am sad at the circumstances that we are currently in because while it is my normal, I weep at the thought that this will be the new normal for everyone else... but time will tell, Royce. Good post and Keep Smiling, my friend :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

Most certainly, time will tell and we shall see

twooldcrows profile image
twooldcrows

everyone else doesn't understand there are lots of people who live this way and of course they don't care ,that is what is wrong with lots of our people in the world ...i know that isn't all of them just the ones that want there world to be perfect every day of there lives...i am sorry but there are some that i would like to show how real life is for thousands of us and others....have a wonderful day and enjoy all that we get to see and hear that goes on in this wonderful world for us great strong ones that truly care about others...

RoyceNewton profile image
RoyceNewton in reply to twooldcrows

yes, most certainly there are many who do not realize what life really is like for many

Frances_B profile image
Frances_B

Kinda getting the terminology a bit mixed up here peoples - "social distancing" is making sure you stay at least 1.5 or 1.8 metres (5 or 6 feet) away from other people regardless of where you are, while "social isolating" is the stuff to do with staying at home and not going out and about i.e. ordering food to be delivered instead of eating in a restaurant, not going to retail stores such as clothing or hardware shops etc etc etc. If you do go to those places that is where you practice the "social distancing". I agree that it's a silly term - it would have been much better to have labelled keeping your distance as "physical distancing" rather than "social distancing".

RoyceNewton profile image
RoyceNewton in reply to Frances_B

agreed

Frances_B profile image
Frances_B in reply to RoyceNewton

And I should have mentioned that even though I'm an introvert and can cope much better with being on my own than an extrovert does/would, I still hate that MS has largely robbed me of capacity to actually get out and do "stuff", even before the COVID-19 lock-downs. It's the un-asked for removal of choice that hurts, and able-bodied people really don't get it. Solitude is by choice, isolation is not.

RoyceNewton profile image
RoyceNewton in reply to Frances_B

we all cope in our own way, there is not a one technique fits all in this illness

CynthiaS profile image
CynthiaS

Thank you for reminding US of our strength and tenacity. Happy Earth Day! Blessings Cynthia

RoyceNewton profile image
RoyceNewton in reply to CynthiaS

happy Earth Day to you as well, dear sister

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