Good morning my beloved ms family. Another nights terrible sleep, me just being paranoid, no ms gremlins thankfully. I hope I have a few more years of peace before Trigeminal Neuralgia starts acting up again. I would suppose this is my new normal. Wait and see if ms is going to try and get me again.
I might suggest that we all put our thinking caps on and try to delay any attacks as much as we can, whenever and wherever we can. “YOU” have been given or “YOU” have a firm Diagnosis (Dx) of ms. “YOU” have your second opinion. Now it is time to start making a huge effort to manipulate it into something that “YOU” can live a long time with. Yes, a very long time, because ms will NOT kill “YOU”, only “YOU” will do that. A life of changes, uncertainties and pain, both emotional and physical lay ahead of us. Having made it 20+ years and know others who are longer into this journey I know that it is very possible to live with ms. I am not sure about fighting it constantly, but I think it is possible to be a warrior in other ways. I shall have to think about that one, look up some other definitions of a warrior.
I digress, ms is your new normal. It is with “YOU” now and it will never go away. Wow, that is a lot to realize, but realize “YOU” must. “YOU” are not a bad person, “YOU” are most certainly not weak. YES, we are all broken, it is not all in your head, sometimes it is in your spinal cord. This everybody with ms must realize. Come to terms with, accept. The sooner that “YOU” can accept this the sooner “YOU” can start adapting to a life with ms. I will always try to tell “YOU” that it is not a terrible, unbearable life of disability. It most certainly I have found to be a life of slow degradation. I once could run and do other athletic things, today after 20+years not so much and certainly not as long or as hard. That could be old age (I am over 50) or it could be ms. It does not matter which, this is us now and we must strive to make our life the best that we possibly can.
Do not merely accept what people say, strive to find what life with ms means to “YOU”. I understand the tears, the frustration, maybe not the anger, but ms is your new normal. Learn to accept it and adapt it to what “YOU” would like it to be. All good and well to say but HOW is the big question. To be fair I believe it is different for all of us. At first I am sure I was not very knowledgeable and blundered from one illogical pseudo cure to another. After a divorce I came under the influence of two wise old ladies and 4 rowdy blokes in a ms support group. The old ladies aid this is the medicine, the nurse will be here tomorrow. The blokes showed me that there is still much more to live for and this is not my end. Of course, there were lots of moments of doubt and fear, but if they could so can I. They were like me, I was like them. They could then so can I. Think about it, if I can so CAN YOU. I started on my Disease-Modifying Therapy (DMT) a needle which to this day I dislike and decided that I would bring my ms life around to away that I could cope with. I still cried a lot at first but I accepted my new strange normal. I fought against my ms by never accepting anybody's, because “YOU” have ms, and “YOU should not either. “YOU” have ms, so what do your best to make it into a form that “YOU” can and will live with.
At first there are many changes, many questions to be asked, many tears to be shed. This is normal, it happens to us all. There may not be bright sunshine ahead but there does not have to darkness and fear.
Royce (your ms writer and brother)
You can do ms, if I can so can you
