Good Morning my beloved ms family, for newbies (newly diagnosed) who do not realize, that is “YOU”. Actually everybody but “YOU” may be unfamiliar with the term. Before we start I feel I should remind or inform “YOU” that I am NOT any sort of trained medical professional I have had had Relapsing-Remitting ms (RRms) since I was 29 and I am now in my 50’s. I do take disease-Modifying Therapy (DMT) and have since I started this journey, non-stop I might add.
How to process, how to talk to family friends co-workers strangers, PEOPLE. This is a little easier for me, I think because at the best of times I am rather standoffish and very blunt. Perhaps not so easy for “YOU”. I believe in many circumstances an “I do not know” might be your best answer, followed by “ I will look into that” “YOU” have done your research and know that this is an incurable progressive illness. RRms, does not move to secondary progressive or any other form of ms. What progressive illness means is that the does disease does get worse. Relax, imagine a power cord. That is your nerve, take a nick out of it. It is not as efficient as it once was. For some reason, ms keeps attacking the same area, why I do not know. But enough nicks and the wire (nerve) accumulates to much damage and the electrical current starts to not flow as efficiently anymore and “YOU” may suffer disability, weakness, inability to control some body functions. This is how it was described to me long ago, do your own research and make sure I am correct, still.
With this disease attacking a huge network, our Central Nervous System (CNS) your symptoms may come and go, attack wildly different areas of your body. It is very variable. It is hard for “YOU” to understand, harder for others. I feel that this might be a way to explain the UNCERTAINTIES to others and yourself. it is a huge game, and the rules are not posted clearly anywhere. Remember that the majority of people just want to help. ms is confusing to them as it is to “YOU”. There is no diet, there is no miracle cure that is being hidden from us. ms has been around a very long time, several hundred years from the medical literature, and nobody has reversed it yet. If they had we would know about it and the person or company would be very wealthy indeed.
How to process? This I feel is very individual, what kind of person are “YOU"?. I cried a lot at first then said “oh well, best I get on with it, this is my new life” and of course did not accept any of the perceived stereotypes. Back in my day it was wheelchair and disability. I have never used a wheelchair and cannot use a cane. I move too fast and cannot ordinate it. I think I am just far too lazy to practice. I do use a trolley at the grocery store for stability but I do shop very often and like to go down most of the rows and look at stuff. Yes, it is an old man thing. I like grocery stores, always have.
ms is a confusing illness, there are lots of questions and very few answers, but it is a part of your long life now and there is nothing that “YOU” or I can do to change that. We can influence it with DMT, exercise, stopping smoking staying physically healthy, but we can not make it go away. It is with us until we pass, learn from it and be at ease with it. Frustrated and confused, but at ease with it.
Royce (your ms writer and brother)
It is not a battle to fight, I feel it is more something to accept and come to terms with
