Good Sunday morning family, as always I hope “YOU” are well rested and ready for another exciting day on our ms life journey. I am hoping for tasty coffee. Funny thing that I can not really taste, but here’s hoping anyway :-).
Today I will try to talk to those newly diagnosed (newbies). It is okay to be scared. It is okay to cry. It is okay to wonder about your future. It is okay. “YOU” will be okay. All that “YOU” are scared of may NOT happen to “YOU”. This is going to be a very long challenging journey for “YOU”, it will take the rest of your life. There is NO CURE, it is chronic and progressive. It is NOT fatal, it is NOT automatically a wheelchair or a walking stick. It may be in the long term but it is NOT guaranteed. Like “YOU” your Relapsing-Remitting ms (RRms) is individual. Yours is not exactly like mine. Your RRms is not like anybody else’s. That means that as much as “YOU” can your future with RRms is yours to make.
The scary stories, the scary images that “YOU” see may not be “YOU”. There are medicines. They do have side effects but they can be managed. A lot of them involve self-injection. This is not as challenging as it sounds. There is a device called an auto-injector. “YOU” put the needle with your chosen disease-Modifying Therapy (DMT) in the injector, place it against your skin, I recommend the fatty part. Press the button, wait until it is finished and no problem. “YOU” just self-injected. “YOU” will have learned about infusion therapy. I think this is your best option. An infusion therapy every 6 moths. It does have side effects, but as I understand it can be moderated.
Most things can be helped, it need not be as difficult a life as “YOU” may have heard. Through we like to refer to ourselves as ms warriors “YOU” are not at level today. Maybe tomorrow, maybe never. I prefer ms manager. Somebody who manages their ms. Makes constant adjustments to everything. To maintain and adjust yourself to live your best life with your illness.
It is entirely possible. Cry a little. Come to terms with what is happening to “YOU”. It takes time, take as much as “YOU” need. As I said RRms is lifelong it is chronic and progressive. it IS livable. “YOU” can have a long life, with DMT who knows seventies or eighties may be possible. Be careful, be sensible act in your best interest who knows what may be in your future. I hope it joyful, happy and with few ms setbacks.
Royce ( your ms writer and brother)
you can live with RRms, live it to your best. Do not ever give up
