Okay last night before I went to bed, I was checking my mail as I do, and I came across a young lady newly diagnosed (Dx’d) with the JC virus. This upset me somewhat as I am sure it did “YOU” and most certainly her. Before we start I will say again I am under No circumstances a trained medical professional. Not even an untrained one, merely somebody who has endured Relapsing Remitting ms (RRms) since 1999, the exact date I am not sure, nor do I care to remember. It really is that unimportant. It just IS, a part of me and my life today and my numerous tomorrows. No big deal. I understand that is not how “YOU” feel right this very moment, but that attitude will come. “YOU” have many many years with this condition, eventually “YOU” will find a comfort level of sorts with it. Things will change in your life. Lovers and heartthrobs will go, perhaps new ones will come. As she who must be obeyed said yesterday we are really all in a very exclusive dating club. Careers and dreams will change. This is neither good or bad, it just IS. Read that last sentence again. Perhaps one more time. RRms is not our enemy, fight it and battle it and “YOU” will lose badly. This is NOT a battle to be fought and won with victory parades at the end. This is certainly more of a management strategy. How can “YOU” maintain yourself as upright as possible for as long as “YOU” possibly can. RRms is a chronic degenerative condition, it is meant to get worse up to a point.
Accept this and do not fight it. There is no need to shake in fear. Some things that may degenerate at first honestly do come back with a lot of perseverance and some failures. When I first met she who must be obeyed twenty years ago she was house bound in a wheelchair and unable to drive a car. Today I can not keep her in the house. She still has issues going into stores from an incident with her bladder twenty odd years ago. Perhaps that is why I am so insistent on wearing adult protective underwear, or perhaps to I’m y own incidents with bowel bladder incidents at pizza shops. Yes, things will happen and they are not all pleasant but none other them are things to hide from or fear. They just are experiences for me to learn from and move through, during this my very long life with a chronic incurable illness, that is RRms.
With that said, I refuse to just surrender myself to RRms’s ravages. There are things that I have lost never to get back. I will never fly again, but perhaps one day. Moving to Titan is pretty unlikely but I can and do imagine. RRms has taken from me as it has from “YOU, but look closely are there things that “YOU” have gained. This group for example, I never would have met such an interesting group if RRms was not in my life. Be careful with your diagnosis (Dx) there are people out there that will try to take advantage of “YOU” people that will hurt “YOU”. We do not live in a perfect society and we are far from a perfect species. Beware of this and learn from it. Learn all that “YOU” can about our condition. Do not allow yourself to be in fear, what may happen, does not mean it will happen to “YOU”
Find and start taking the strongest Disease Modifying Therapy (DMT) that “YOU” can. There are side effects to the medicine and not every medicine works for everybody. If “YOU” are too scared of the treatment look at some of the ms Societies adds from twenty years ago. Smiling people in wheelchairs. That was my future if I did not take a medicine twenty years ago. So I took the medicine and I stand writing this to “YOU” today and will walk to the toilet(bathroom) when I need to use it. A choice, there are many choices in this our RRms life just like in life in general. Now I have never used a wheelchair myself though when I travel I always use wheelchair services, why walk through a huge airport when “YOU” can be pushed directly to your gate? Do not look at this as any type of end. Look at this as a very unexpected opportunity to be a very different “YOU”. Every moment of every day find someway to make yourself stronger “YOU will need it during your long ms journey.
Royce
I will never be what I was, I will be something different I wonder what it shall be
Sorry this is a little longer and later than usual.
More music therapy before bed
