It is not as hard as you think - My MSAA Community

My MSAA Community

8,958 members20,670 posts

It is not as hard as you think

RoyceNewton profile image
2 Replies

No a diagnosis(DX) of Relapsing Remitting ms (RRms) is not a disaster or an impossible incurable life sentence. Let me correct myself. Yes, today in 2019 it is incurable, and likely will be for the next twenty or so years at the least, so I guess that could be a life sentence depending upon your age. “BUT” it is not all bad, actually there are some rather good bits in it but “YOU” really have to change your outlook on things. They have treatments today. Twenty odd years ago I had two options, Interferon Beta 1b or nothing, I was told that there are 14 approved options here in Australia today twenty years later. A bit of an improvement in so few years. All I had was a once every other day subcutaneous injection. Today I take a tablet twice a day, easy as pie. I understand that there is an infusion that “YOU” can take every six months. How times have changed. There are a number of diets that can be followed. Certainly not a cure but a healthy lifestyle is always a good idea. There is an ms specific gym online that can be joined and followed. As I recall not expensive at the basic level and I have found them to be very pleasant. Without a doubt a DX of RRms can be a bit of a shock, but there is so much available today and not necessarily at great cost.

All it takes is for “YOU”, to start looking and find your own answers. Be careful there are unscrupulous rogues out there who claim to be able to cure “YOU” and make everything good again. Life with RRms is not bad it just takes constant adjusting. It keeps “YOU” from getting bored with your long life if nothing else. Did I make myself clear? There is no cure, it can be fun to search, but do not open your wallet or purse and do not get your hopes up to high. I am fifty and fully expect to die with this illness somewhere around eighty. Men in my family do not live to far into their seventies, of course I will be different.

So, it boils down to you facing this illness head-on. Shed your tears, honestly they never really go away, and start moving forward. “YOU” are going to make mistake, I have made more than my fair share. Hard headed man that I am, which is not to say women are not hard headed, “YOU” should meet my mother, who I love to bits, but boy oh boy she is stubborn sometimes. No, make your mistakes, learn from them and keep moving forward. Never believe that “YOU” can not do something, prove it to yourself. Because “YOU” without a doubt can do a lot more than “YOU” might think “YOU” can. Aim high for your life, take the strongest medicine. It is far easier to start at the top of a hill and move down than to start at the bottom or part way up and have to climb to the top.

I believe Ocrevus is the strongest medicine today, start there and if “YOU” must move down, move down. Everything has side effects. Do not be scared of them, they are part and parcel of out illness. It just “IS”. No real reason why, it just “IS”

Now start travelling along your ms path. If “YOU” are already walking keep going. We will support “YOU” as best we can when we can. This is not an impossible condition, merely one that requires lots of perseverance and a will to live it well.

Royce

living it as well as I can everyday

Written by
RoyceNewton profile image
RoyceNewton
To view profiles and participate in discussions please or .
Read more about...
2 Replies
carolek572 profile image
carolek572CommunityAmbassador

Good, solid advice, Royce! There is a plethora of ways to manage this 'ms'. Some will be beneficial for you, others not so much. But try, and never ever give up. 'ms' is manageable, and if you're ever so inclined, share your experience with this forum. You could be helping someone else on their 'ms' journey.

Together, we are all stronger!

Carole :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

exactly

You may also like...

hard time but manageable thanks to all you!

the morphine helps 😂. Doesn’t take all the pain away but definitely makes it more bearable Have...

What do you think?

nursing education a few years back. I’m ready to move on from direct patient care. I’m an operating...

Thinking of you Friends!

How are you all doing lately? That’s a big question I know, but love to hear from you if you wish to

24 Apr 2023 Do not be scared you are okay.

but YOU are going to be OKAY. Relax, take your time, YOU are going to be OKAY. Live well, YOU are...

25 Nov 2023 Read the whole article before YOU comment.

good. YOU are starting to get a hang of this up and down ms life, It is not so bad it just...