Post 587 Come sit with me 27 Jan 2019 - My MSAA Community

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Post 587 Come sit with me 27 Jan 2019

RoyceNewton profile image
7 Replies

G’day(Hello). My name is Royce. I am NOT any sort of medical professional or therapist. I am a bloke (man) who has lived with Relapsing Remitting ms (RRms) for along time, 20+years and who lives with a young lady who has had it a few years longer. That was important so “YOU” can read it again. I have had RRms for along time, a very long time and so will “YOU”. There are a few things because of RRms I do not do anymore, some legally (I used to be a pilot) Some physically, I used to be able to run and ride a bicycle. My balance is not real good so no running and no riding a bicycle. I found away around the Bicycle, I got a recumbent racing tricycle. No balance required.

The absolute totally and utterly worst thing is my complete lack of erections, I used to be so proud of them but alas no more. Not so bad as my friend has vaginal dryness and a lack of sensitivity. Try as a might I feel those days are gone for her as well. Is it RRms or age? I am not sure. My recommendation for “YOU” if “YOU” are inclined make a lot of memories. Not regrets but memories that bring a smile to your face. I remember long ago flying a plane late at night all alone in the sky. There was me and a million stars and nothing else. I remember sitting in the darkness of the Grand Canyon just listening to my breathing. I can remember lots of things and they keep a smile on my face.

I try to forget my intense fear of needles. The embarrassment of having my mother give me buttock injections, my Uncle doing it, an old school friend doing it, those are memories I have but I do not need to dwell on and neither should “YOU”. Dwell on the positive, dwell on your strength your resilience. Allow yourself to fail but do not make those failures huge stones that crush “YOU” and make your life a constant misery. RRms is not the end it is a new beginning, choose to make it a good one. Do not expect sunshine and rainbows. “YOU” and I are still sick, but do not expect doom and gloom. It does not have to be that way if “YOU” choose not to have your long RRms life follow that path. There can be good and it is up to “YOU” to find it for yourself.

Royce (the ms writer)

A nice dim day not bright and shiny, just a little cloudy

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RoyceNewton
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7 Replies
carolek572 profile image
carolek572CommunityAmbassador

I, too, focus on the good as it helps me get through the 'bad'. Thoughtful post, Royce :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

I hope it helps a Sister or Brother struggling

carolek572 profile image
carolek572CommunityAmbassador in reply to RoyceNewton

It does, more than you know, Royce :-D

twooldcrows profile image
twooldcrows

wow another great post for all of us to know we are humans just like others with lots of problems but we do keep on to more great memories and a few not to funny but that is real life...love to read that we all have some of the same things going on in our lives....just keep on loving and having happiness in your lives...for many years to come...

MarkUpnorth profile image
MarkUpnorth

I agree! Focus on the good. Simply deal with the bad. I too can no longer ride anything but a recumbant. I was unlucky enough to have my car "redecorated" by a major hailstorm, which was lucky thanks to insurance I could then afford a couple recumbants! One for me, and one for my riding partner!

Just like I don't see all the dents in my car, but I enjoy the bikes, I don't see all the bad things of M.S., only the good, like "I got to retire" early", and don't have to.......

And yes, I savor the memories of my working days. Only wish I could go back?.... Well, I can remember (what I can) of those great days. And, I can fly too! Anytime I try climbing a ladder these days, I fly right off! Haven't perfected my landings though, so I limit my altitude. And being poor as a result of no longer working, has made me "The Frugal Shopper". I can find unbelievable bargains on whatever I need. And have learned how to improvise so much! Yep, I can do things now I never could before! Which makes up for all those things I can't do anymore, like remember everything I definitely cannot do!

2littletime profile image
2littletime

Thank you for your post...I'm going to have my family read it too so maybe they will finally get it. I too was diagnosed 20 years ago, went on permanent disability 5 years later. So many co-workers were jealous that I no longer had to work. Oh, how I wanted to scream at them. (I didn't) At first I used humor to get through the day. (It worked, & still does) when I get up from a chair & do a turn-round sometimes I get the look of "what was that?" I'm always at least 10 paces behind everyone else. (Eventually I catch up.) So...I just keep plugging along doing what I can. No more driving, never could ride a bike very well, but I can still clean house & cook a meal. (If I want to). So I'm grateful for what I have & what I am able to do. Thanks for reminding me of that.😀

RoyceNewton profile image
RoyceNewton in reply to 2littletime

no problem at all

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