My beloved ms family. Today reading of your struggles caused me deep pain. Will I be able to cope when Trigeminal Neuralgia comes back, stabbing my face. I fear I only have a few years left, I am already starting to have pain in parts of my face. Is there any way that I can soothe your pain and frustrations? Is there any way I can help “YOU” soothe yours? We are all on a rollercoaster, a ride on which we can not get off, a ride a walk a journey full of unforeseen and unexpected pitfalls. In my very humble opinion, we can only learn to accept the pitfalls and do our best to steel ourselves against the not so good times. Having Relapsing-Remitting ms (RRms) does not guarantee us to progress. Taking Disease-Modifying Therapy (DMT) does not give us any guarantees. There are no guarantees in this RRms journey that we are on. If it progression happens, it happens nobody can or will tell us when this is a mystery disease after all. Being scared, apprehensive is normal. A lack of ease at accepting the hills we must face is normal and to be expected. I do not remember being taught how to cope with my body slowly failing me. “YOU” and I have no choice but to accept and adapt to our circumstances. No matter how much they scare us and how much we do not like it and battle against it.
Imagine yourself facing a wave, it will hit us. Smoother us, nearly drown us. But eventually it will fall back. We coped we will breathe again. Then the wave will hit us again, and again BUT we survived once. We will do it again. Grab something and prepare for the next wave. It is not easy, it is hard. BUT we are made of very strong stuff.
We may be scared, this is normal.For somebody with a chronic incurable progressive illness, fear is normal. Pain may be normal, frustration may be normal. YOU my RRms sibling are normal. it is challenging, but “YOU and I must learn to accept. To carry on no matter how slowly or ungainly we are, carry on we must. This is our journey and we only can travel it. Nobody can do it for us, we must take the next step. We must go forward
Royce (your ms writer and brother)
at your own pace accept ,then move forward, this is your ms journey
