Post 530 Frustration 1 Oct 2019

[RoyceNewton]

Our daily legal notice. I am not an overpaid over trained busy uncaring medical professional. Okay, that was mean but “YOU” get the picture. What I say are my words, and they are not meant to be unnecessarily cruel or rude to anybody. If “YOU” feel they are, I apologize it was not meant that way. If “YOU” are having ms issues, delete this and ignore it. I have Relapsing-Remitting ms (RRms) as well and guess what I have feelings, respect them.

Frustration, where do “YOU” start. This illness is one big frustration from the beginning, for a lot of people. It is a huge uphill climb merely to get diagnosed (Dx’d) then we have the adventure of picking which Disease-Modifying Therapy (DMT) to take, your Doctors preference or the strongest one available, (Ocrevus an infusion I believe) or a big mistake, waiting and seeing or doing nothing. Going the natural route is doing nothing by the way. If “YOU” want to waste money I know of a few good charities that “YOU” can donate to.

To help “YOU” out and ease some of your frustration, here is a very biased guide. Take the strongest possible DMT available. Ocrevus or one that starts with M, research job for “YOU” Start to love research over your long life with this condition “YOU” will do a lot of it. Sorry, I forgot to tell “YOU that I take Tecfidera and am not an employee of anybody, sorry.

Back to our frustration. Things will happen over your ms journey, just like things happen in life. The love of our life divorces us, we have issues doing up buttons, our bladder and bowel develop a mind of their own, everywhere we turn a frustration. This is the disease, it is not "YOU" The value that "YOU" had prior to Dx is till the value "YOU" have today. Perhaps not financial, but "YOU" as a person as an individual. "YOU" have value, never forget that. For what it is worth, I value "YOU" and am glad to know "YOU". Frustration, disappointment, despair and fear are a part of any day with RRms. Expect this and learn to accept it. Things are frustrating when "YOU" expect them to turn out the way "YOU" planned. Have fewer plans and learn to go with the flow. That is not to say just sit in the corner and let life pass "YOU" by. That is a waste of your many years. Have plans and dreams, goals, but let them change. Let them be a log in a running stream. Hold onto them for a time and when your circumstances change, let them go. Knowing this will make your life a lot easier to live with.

RRms is a very complicated disease. It is not known why we have it, where it came from, or how to get rid of it. We do not know where it may strike next. What DMT is best for us. Too many questions, very few answers. There is no need to be disappointed, it is the nature of the illness. Come to terms with this in your own body and make your long life journey with ms bearable. Do not be sad that it happened to "YOU", be glad it was "YOU" and not your child or a sibling. No matter how this effects "YOU, "YOU" can cope and "YOU" have us .

Royce (the ms writer)

you are never alone we are here

[carolek572 CommunityAmbassador]

Good post, Royce. Let's focus on what we can do, not on what we cannot do.

[RoyceNewton in reply to carolek572]

thanks mate

[MarkUpnorth]

Sounds like you are still where I was. I swallowed the big bad pill (realization that I wasn't going to help this thing doing the newest and greatest DMT. I did them for years and years. Did it help, maybe, but the reality was, and still is, this disease is going to carry me all the way to H. E. double toothpicks going that route. But WAIT! No it's not. Yes, I've accumulated lots and lots of baggage as a result of this thing called M.S., BUT, I learned the hard way, if you don't do anything else, focus on what you are putting in your mouth. Everyday there is more and more about how Food Is Medicine. It's not news anymore. It's been over half a decade since my last relapse, of many, many. I collected essentially them all. Some the doctors never heard of, till I got them. Then I died and came back. At least I felt like I died, living like a zombie as in the Walking Dead. BUT, if you really, really, really watch what you are eating, staying away from anything and everything that doesn't sound like it came naturally from nature, You Have A Chance! Am I getting better? SMALL STEPS, but YES I AM! And others are too from what I've been told in confidence by my Licensed Drug Dealer. Now there's a sorry statement! Not many, in fact I would guess they are far and few between, because it's too hard for most people. Easier to take a pill, shot, infusion.... BUT, all I ever heard about those options was it MAY slow down the progression. No One ever made any promises it would fix this thing. Okay, I can't promise staying on clean food will make you better, BUT....IT CAN'T HURT!

And it seems to be working! Really! And it's a whole lot cheaper than eating artificially man made foods!

[RoyceNewton in reply to MarkUpnorth]

yes, I think healthy life style positive realistic expectations and DMT will go a very long way