I want the facts and nothing but the facts, I will go home and cry later. I want to know what this diagnosis means to me, what may be in my future?. Real easy answer here. Everything and nothing.
I am sorry that “YOU” have, sorry that you had to join our family, and yes we are a family and now “YOU” are a member. My name is Royce, I am not any type of medical professional , please never assume I am. I do not want your money and should never ask for it. I represent ME and ME only, what I say are my words and belong to me and nobody else. Though I may mention others good ideas.
This is a very big condition. It will be with “YOU” until the day “YOU” die. Please do not be scared, I have lived with it for over twenty years so far and I expect another twenty unless I do something stupid. Which I have been known to do. All things considered “YOU” are in a pretty good spot. There are treatments for this disease, Relapsing Remitting ms (RRms) today. No cures, they do not know what even causes it, so just treatments, many of them in fact. All “YOU” care about is Ocrevus and M?? I can not find its names that is an exercise for “YOU”. If any doctor suggests anything weaker than these drugs say NO. Your priority is reduction in the relapse rate as seen on Magnetic Resonance Imaging (MRI) and by clinical examination. Anything other than that is garbage. That sweet old lady who swears she was cured by whatever is lying to “YOU”. Maybe unintentionally but she is still lying. Be very careful, do your research, “YOU” will get that a lot of that (lying) in this disease over your many years. First off assume I am not telling “YOU” the truth. I believe I am but “YOU” can never tell. If there is one person on this blog that reads this please tell them I am telling the truth. Also if your doctor insists on weaker or older drugs. Ask if he is willing to pay for your increased disability as “YOU” get older, for that is where “YOU” may be headed. Go for the strongest medicine.
Okay, “YOU “ know what “YOU” are looking for and these are two of the most powerful medicines out there today. Take them, they have side effects all strong medicines do and these are very strong. I have never worked out what flu like symptoms are but I would rather walk/stumble with a dribbley nose than not walk.
This illness has no cure, it is debilitating and it does get worse. Not as quickly these days now that we have Disease Modifying Therapy (DMT) but it does get worse, I am sorry but “YOU” need to come to terms with that and accept it. I found when I was Diagnosed (DXd) long ago that crying was really good. It did not do anything constructive but it let some of the pain out. Here is one for “YOU”. This disease is not fatal “YOU” are going to live a long life. Very much different than what “YOU” had planned on but still a long and potentially good life. With children if that is what “YOU” want, a husband as well if “YOU” want one of those. Still trying to convince she who must be obeyed that I am a worthwhile bloke, I do have my days.
As “YOU” slow down your crying start looking into your future. What type of goal are “YOU” going to set yourself. Goals and something to aim for, a purpose is what your life all about., Give yourself a vague lifelong goal then maybe some milestone goals. Make your ms journey one with lots of turns twists and loops. Do not expect it to be a long straight road, this is not that type of illness. Todays answer may not be tomorrows. Your first Neurologist (Neuro) will not be your last. I have had four. Your first DMT will not be your last, I have had three. Things change, circumstances change, do not fight this, it is life and “YOU” my dear sibling are 1n it for a long time.
I like as a source of mental strength stories of people who prevailed through incredibly hardship. I like to read of the young Australian soldiers on the Burma-Thai railroad during World War 2, the stories of the badly burned British fighter pilots. These men were younger than me when they were injured or captured and they prevailed. I know of a young lady who was toasted as a young nurse long ago and the many plastic surgeries that she has had to go through over the years. If she could and they could, then why can’t I, live with this disease. I have never found a reason why not, so if they “CAN SO CAN I, SO CAN YOU” Look around “YOU” for resources to give “YOU” strength. Get your very own Gringotts vault for your treasured of memories of perseverance and successes.
Do not give up on yourself. There are ups and downs in life, there are ups and downs in our ms life. More downs than ups but that is the nature of this condition, it is that it goes downhill. The nature of “YOU” should be to do everything that “YOU” can to make the downhill slope as gentle as possible. I am not anti any miracle cure, I might just say look closely into the proof before “YOU” spend your hard earned money. Be skeptical, ask where the proof is, what data do they have? If there is a cure or treatment ask what exactly are they curing and how. Ask what are they not multi billionaires. Surely if they were that worthwhile they would have the world flocking to their doors. Most certainly have hope, hope is a good thing, but be realistic about it. Do not expect your very own RRMS to be cured in a week, RRms is much more serious than that. It takes a special kind of person to live well and thrive with it. The constant uncertainties, the disappointments . “YOU” my ms sibling are that kind of person. It does not matter what anybody else says, how “YOU” do not look sick. What does sick look like anyway? This is a Central Nervous System (CNS) disorder, it does not always show. People do not see your difficulties, “YOU” plan it like that. Somebody says “YOU Look better or good” your reply should be “Oh thank you, I am hiding it well today”, or “thanks today is an up day, you do not want to see me on a down day”, or my favorite. “you do not think these jeans make my bum look big?”
This is a very serious lifelong condition have a sense of humor with it. Drop something and say “I thought that would bounce” Fall down and cry out that there is a dust bunny hiding in the corner. do your research take your DMT religiously but find joy and happiness in your life. RRms is no reason not to make this life a really good one.
Royce (The writer)
Everyday in some way I am getting better and better
