G’Day, my ms family. As usual, I hope last night was good for “YOU”, no 3 am frights, just calm pain-free sleep. If anybody says there is no pain in ms they are WRONG. the pain may not be physical but it most certainly can be mental, which I think might be worse.
“YOU” and I have Relapsing-Remitting ms (RRms). We will have this until we pass. Being diagnosed (Dx’d at 29ish I should have it 40 or 50 years. Read that again, then put in your own dates. Log your passing at the national average. “YOU will have this incurable chronic progressive illness for that many years. Your life is not likely to be like those who passed more than 20 years before “YOU”, “YOU” have Disease-Modifying therapy )DMT) to take. Yes, I understand they suck and “YOU” do not want to become a pin cushion but this “YOU” must do. Unless of course “YOU” want for some reason to become bedridden and permanently dependent upon somebody else. I would think if “YOU” had a lot of money this could be bearable, but I am not quite that wealthy and I suspect neither are “YOU”.
That means one thing. “YOU” have to make an effort. At first “YOU” may have to make a lot of effort to learn this illness. To change yourself and your behaviours to your new ms normal. Adapt, and learn to accept that adapting is how “YOU” now have to live. This new way of doing things is not impossible. Once “YOU” accept it, “YOU” will find that constant adaption is not hard. Let it become part of your nature. Adopt an Australian devil may care attitude. “Oh okay XYZ happened, so let’s get it round it, it is no big deal”. Do not quote me on that I am likely to be wrong but “YOU” get the picture. Things will happen, not expected or pleasant. That is the nature of our affliction. Stop a moment, centre yourself and think about a way to get around whatever it may be. My bladder is unreliable, it leaks when it wants to. Instead of feeling sorry for myself, I started using adult protective underwear. I am still careful about my fluid intake but I know that if I do wet myself, only I will know. A problem solved with no great worry.
ms is not easy. It is not meant to be. If it was more people might have it. I prefer to think that only the really strong ones can handle it. “YOU” my sister and brother are the strong one. “YOU” do not have to be strong every minute of every day for years. CRYING IS ALLOWED, this is not baseball. (A movie quote) . In fact I recommend a good strong cry every now and again. “YOU” are not superwoman even if “YOU” are a superwoman. read that again so it makes sense. No, modern RRms does not have to be a struggle, it can be lived with and even brought under your control. I think the last time I had any real issues was years ago with m Trigeminal Neuralgia. Yes, my bladder still sometimes leaks but that can be managed. RRms does not have to be a constant struggle. Learn about your ms and adapt. Change your habits and find your new normal for now. It will change, that is the nature of our illness, but I do think it does stabilize eventually. Make it your aim to be as good as “YOU” can be so when “YOU” stabilize “YOU” are at a 6 not a 2. Never give up, live your best life, always.
Royce (your ms writer)
Aim always to be better than a 6
