A nasty inconvenience or a monster, you ... - My MSAA Community

My MSAA Community

6,411 members15,637 posts

A nasty inconvenience or a monster, you choose


G'day I hope your nights sleep was good and your day is going well.

I feel today you may be in need of a slight explanation.

Twenty years ago I went to my first ever ms group meeting, I was 29 very newly diagnosed ad quite frankly terrified. I went into the lunch and saw a room full of ladies in wheelchairs, the NmsS info at the time had wheelchair people on the covers of all their information.

How do you think a young married pilot would feel, especially calm when the Neuro gives him 3 brochures about medicine all involving needles. Let me say I have an irrational fear of needles. Needlephonic, still am but a little less so now, not much just a little less. Anyway this lunch and the brochures scared me, is this what my future holds?

twenty, sorry 19 years later, I still walk I may not run or drive but these things are really not that important to me. My fear was a little unjustified it turn out. My wife of the time immediately divorced me I changed countries and was put on Interferon Beta1B. I really had no choice, my Grandmother and Mother said so, I was at their houses at the time.

From their I started to learn everything I could about this illness. I and I stress I found that nobody seemed to pinpoint a cause, So it was ME doing it to ME, not something doing it to me. My research found that going into battle with my suit of armor was not really going to work for me. I needed to do this carefully, plan a strategy and make changes as need be. I needed to learn to be a master manipulator and manager of my condition. Just like Machiavelli, if I was to survive well.

I like to think I learned my lessons. I eat ok, I exercise, I take my medicine and I ask questions. I even use my motorized scooter if I want to go further than the end of the street or grocery shopping. It really does shock people when I just stand up to get something from the top shelf, but that is their problem not mine. I have other concerns.

So u see it is not really a terrible monster for me, merely an inconvenience, a very painful one at times. You say oh yes Royce had 3 laser surgeries on his face because of Trigeminal Neuralgia didn't he, I can not count the times my bladder said "I need to go NOW, its ok I just did, and we will not mention the bowel incidents.

I really try to make it a game of sorts. ms tries to stop me and I find a way around it. Just a big strategy game. ms moves left and I move right, sometimes he catches me sometimes I escape his grasp.

Now that is haw I look at it. It has worked very well for me so far but I can not say what tomorrow brings or what my outlook will be in the morning. It is all a big game, I just do my best to get the game in my favor.

You may read this and think I have all sorts of advantages that you do not have, NO actually I have the same medicines available that you do, my neuro has a TERRIBLE bedside manner, turns out I am claustrophobic so MRIs are no fun and I go through GPs far to regularly.

The ONE advantage tat I have and you do not yet have is that I made a CHOICE. I made a CHOICE to do everything I could to give me some sort of advantage in this ms journey. I CHOOSE and I will CHOSE again to get every advantage I can.

To me ms you are not a monster, you are a rather annoying inconvenience that I will outmaneuver every time you attack me, because I am ME and I CAN I WILL and I DO succeed no matter what. Just takes a little patience.

You can do this as well, just start making the CHOICE to walk at 50 at 60 at 70, always. Find ways around ms. I do not feel I am fighting anything just playing the best game that I can.


If you are warrior and fight, hats off to you. We all have a journey to travel.

18 Replies

Great read Royce👍🐾. Ken

RoyceNewton in reply to Kenu


Rock on!!🤘

RoyceNewton in reply to JMWCO


I'm no warrior either, and there is no monster. I can't begin to understand that mindset and how it is helpful to any chronic disease sufferer, but it seems to sell a lot of t-shirts 🤷‍♀️

RoyceNewton in reply to kdali


JMWCO in reply to kdali

I think it has to do with how we all individualize. I look at things as my new normal but I’ve never let anything stop me from trying even if failure is the result as you learn, modify, try again or move on. I still don’t know what all this means to me personally other than trying, learning and reading. I think looking to take action against something helps some people or putting a label on it for the emotional and physical toll it’s taken on others. That’s the catch it varies so greatly from person to person that although we are all living/dealing with it our perspective is a little or a lot different.

Royce tends to go from real to inspirational to the middle of both with his commentary and rightly so- each of us has our ups/downs and “normal” we all chose to grow and move forward to have the best lives possible or be defeated and deflated.

I think we all have things to live for and that we love- how we choose to interact/balance what our personal MS issues are do not always have to impact anyone but ourselves. It’s not to say there aren’t the ‘I’m in bed feeling sorry for myself. Or the head on I’m running several miles today and playing with my kids - will I pay for it later sure but I wouldn’t pass the MOMENT(s) up for anything and MS didn’t stop my life it just changed it.

Call it a monster, call it the end if this life call it what you will but i find reading Royce’s story as saying ‘don’t judge’ what you don’t know and I’ve balanced my limits where I live a successful life and frankly I’m happy but it may not be all the time.


As usual thanks for the encouraging words. You nailed it good



Thanks.You motivated me to be good to myself.This is the best thing i have read about ms .


Royce you are amazing to me. Thanks for a great post. 😀❤️

RoyceNewton in reply to BigMar7

Glad you liked it thanks.

Thanks Royce,

I am still trying to get a handle on my frustrations regarding this disease.

At times I can have that positive outlook that you share. I struggle with the lack of coordination that comes with this and I still get embarrassed by my antics. (falling down, almost falling down, dropping things and eating in public) it's a journey and I find it very comforting to have a community like this to share and learn. Thank you and all the other folks that I've met through this forum.

I hated eating in front of people even before MS. Its worse now. I wont go out without my fiancé cuz he knows how to make it easier for me

RoyceNewton in reply to CraigS

thank you for being a part of us.

Great post. Thanks for your honesty. It sure does help to know that other people are dealing with the same stuff.

I like how u said u dont care what other people think cuz u have bigger problems.

My fiancé is helping to train a service dog for a woman and she gets anxiety over what people think of her with the dog. I want to shake her and tell her its THEIR problem what they think not hers.

Never let what other people think! If they have nothing else better to do than judge u - they have no life. Feel sorry for them and move on. 😁

You may also like...