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Post 531 RRms it is not as bad as you imagine 2 Oct 2019

RoyceNewton profile image
10 Replies

We begin today with our usual notice. I am not a medical professional or therapist of any sort. Nor am I a paid or unpaid spokesman for anybody but me. These are my opinions and knowledge, based upon twenty plus years with Relapsing-Remitting ms as a male and she who must be obeyeds twenty-three plus years experience. If "YOU" disagree please be polite, I have ms as well and am wrong at times.

Here we go. Sit down, put the kettle on, If "YOU" can manage it go to the local coffee shop and get a cup of what "YOU" yearn for, not booze. Got it, good, now let us have a talk. Whatever "YOU" see or hear crying is allowed, I might even say it is even expected. "YOU" may cry today because "YOU" think your life is over. It most certainly is not. "YOU" may cry because a spouse or significant other leaves "YOU", this happens a lot to us. "YOU" may cry in twenty years one night when "YOU" look at the stars. My dear sister or brother "YOU" are most certainly going to cry, a lot at first, maybe less later. Get used to it. It is a part of our condition. I think perhaps they should put that first in all the ms magazines we get. Crying does not show that "YOU" are weak or any of that sort, merely that "YOU" need to let the emotions out, and crying is a far less violent way to do it.

Now that "YOU" have cried a little, may I interrupt please? Wipe away those tears, and smile. Bigger smile,that is better. All the fears that "YOU" have, all the doubts that may be in your head. Try hard and banish them for a moment. Hear or read this and remember it. RRms is not as bad as "YOU" think or imagine. Because "YOU" have been diagnosed with it does not mean any of the fears "YOU" have will come to pass. "YOU" can and should live to a ripe old age, have children if that is what "YOU" want. A loving spouse, a fulfilling career. I understand that the last two are a little out of our control, but then again, so is life.

this is something worth putting in the back of your mind. There are no rules or guidebook for your life. At least none that we remember, at least I do not. What happens to "YOU' happens because merely BECAUSE no more no less. "YOU" and I have RRms, because. Because we are human, this is a human disease, so logic says, why not. See was that not easy? It was not that apple you ate as a child or those chocolate biscuits, no, it is just because. Does that put your mind at ease a little. Search for an answer, "YOU" will not find one. Eventually "YOU" will realize that I am right, but feel free to search. Try not to waste too much money, "YOU" will need that in the years to come.

Sip your drink, and now we have to talk about medicine. There exists today Disease-Modifying Therapy(DMT) Most of them involve needles. I hate needles, and I still took mine at first every other day for years. When I started, I had a nice soft posterior so I was told. These days much smaller with lumpy spots. I will not be winning any sexy arse competitions anymore. Might be old age but I prefer to blame RRms, I can be like that. There are a few tablets and a few infusions. "YOU" want the infusions. Ocrevus and one that starts with M, look it up I will not give "YOU" all the answers. There are side effects, there are always side effects. This is a very serious illness it is not a two aspirin and lay down and rest sort of illness.

RRms involves some effort, but it is far from an impossible or too difficult a situation for "YOU" to live through. Not merely live through but to have a good long life wife. There will be tears, moments of fear and uncertainty, but my dear sibling. "YOU" can get through this. Take your time, make smart, calculated decisions and live the best RRms life that "YOU" possibly can.

As I have said, I am not a medical professional or a spokesman for anybody, but I would avoid any medicine that could kill me. PML, "YOU" will learn which tablet as "YOU" do your own research, and I would never wait and see. Waiting hurts "YOU" nobody else, not your medical team, only "YOU".

Royce (the ms writer)

it is a long life, make it a good one

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RoyceNewton
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10 Replies
twooldcrows profile image
twooldcrows

again love to read for it is the truth and no one should be upset at you for saying the truth...

RoyceNewton profile image
RoyceNewton in reply to twooldcrows

Thank you I hope it helps somebody newly diagnosed(newly) cope

dksegues profile image
dksegues

R

I appreciate you. I have cried more since my first daughter was born four years ago than in the 47 years since. Thus, as a near-52 year old whose been diagnosed for less than a month, my pump is primed, and flowing. Thank you for voicing often inaudible and invisible tears.....

RoyceNewton profile image
RoyceNewton in reply to dksegues

my pleasure I hope it continues to help

carolek572 profile image
carolek572CommunityAmbassador

Royce, life would be so boring if we knew all of its outcomes, correct? Go out and live it, despite 'ms', and

Keep Smiling,

Carole :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

live it because of ms, really live it

Juliew19673 profile image
Juliew19673

Good grief! You need to get that book out already and given to every person when they are first DXED! Thanks Royce!

RoyceNewton profile image
RoyceNewton

tell masa to steal the relevant notes and give them to newbies, hint hint

janetb1968 profile image
janetb1968

Thank u Royce means a lot xxx

RoyceNewton profile image
RoyceNewton in reply to janetb1968

thank you and I hope you are living okay

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