So confused what do I do?: Relax stop... - My MSAA Community

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So confused what do I do?

RoyceNewton profile image

Relax stop crying for a minute or two and just relax. It will really be okay, Very very different but it will be okay.

“YOU” and only “YOU” have a lot of decisions to make. Some will really affect the long life that “YOU” as a newly diagnosed person (newbie) with Relapsing-Remitting ms (RRms) are going to have. This is not a fatal illness but a longterm chronic condition, start thinking that way. This is longterm, how is what “YOU” do today going to effect “YOU” in the future? What are “YOU” teaching your children? and others around "YOU"?

Without being overly rude try to protect yourself. It is very hard as an adult to soil yourself in public, protect yourself. Ask yourself is it worse to wear discrete protection or to walk around with a wet patch? Is it worse to have to sit in an infusion room for hours or to be told by your Neurologist (neuro) that your disease is progressing fast? Again “YOU” are doing your best to protect yourself, always.

I am hesitant to say this as I have absolutely “NO” professional qualifications to back up what I am going to say. Merely that RRms is a disease of the Central Nervous System (CNS) The cnss is very large. RRms can interfere with any of the CNS, again and again. So when people say that no two ms people are the same always bare that in mind. What worked for them, may not work for “YOU” and vice versa,. and what works for “YOU” may not work for somebody else. Do not be disheartened, just try something else. Always give yourself some time to get over side effects but if it really is unbearable change to something else.

I wish that twenty years ago somebody had told me to start relaxing and to take things a little easier on myself and others. My illness is my illness. I should not expect all the answers, all the solutions and techniques from anybody but me. I should have accepted some guidance and wisdom from others around me. Unfortunately twenty years ago it was not quite as easy as it is to get today. So ask questions, lots of questions. This forum is great somebody will have an idea for you, and one idea can lead to another and pretty soon “YOU” will have an answer.

This is a lifelong condition, the answers “YOU” get today may not apply tomorrow. Do not despair, this is mslife. Weird, not really wonderful but certainly different. “YOU” make life a lot easier on your self by being like Bamboo. Constantly flexing, bending and withering the uncertainties that life with ms will throw at “YOU”. Develop your very own belief system that allows “YOU” to cope. Take a little of mine, then somebody else’s then somebody else’s, roll them altogether into a big ball, like multicolored silly putty, squish it in your hand and mold it into a ball of ideas that suits “YOU” Because no matter what this my friend, is your illness and the solution to it is yours and yours alone.

Just relax, calm down. This is not an end it is merely a sharp left turn in what “YOU” thought your life was going to be. Take your DMT and start along your ms journey. It really does get better, a little hard to see sometimes, but there is light in the tunnel. “YOU” just have to find it and use it.

Royce

20 years in and still learning

4 Replies

👍

RoyceNewton profile image
RoyceNewton in reply to Morllyn

thanks

Hi, I really do appreciate you for posting this fabulous information. Lately I have been trying to compare my RRMS symptoms with my older sister. At this point that cannot be done no matter what I recommend she didn't and now she can not walk. I Thank Messiah for this site, postings and everyone here.

glad I could help

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