Some things in our Relapsing-Remitting ms (RRms) life I feel are really not important., unless of course “YOU” are a research scientist, which I am assuming that none of us are. Okay, maybe one of us, but I guarantee it is not me.
How did I get RRms. NOT important, honestly who cares. It is something to think about for five minutes and that is about it. The really important question, and one “YOU” should think about every day is how do I choose to live my life with this condition. For most certainly “YOU” are going to live a very long time with this condition. It is not fatal, it is debilitating, it will take away from “YOU”. Things that “YOU” could do once, but over the years “YOU” will find yourself not able to do, or only able to do with much effort. This is your life with a chronic progressive health condition.
So, naturally the important question is how do I plan to live with RRms. Set about making a plan for yourself. Then a second, third and fourth plan. Be flexible like bamboo, do not be rigid and unmoving like an old oak tree. All that will happen then is disappointment and pain. With the uncertainty of this condition, plans can be made but they must come with alternatives. The aim is not to live in a permanent state of disappointment because Plan A did not work. The aim is to say oh plan Q works just fine but I made an attempt at all those other plans and I have new experiences to tell me how to achieve my goal. Of course if “YOU” can not think of your next plan, ask somebody. They may have an idea that “YOU” had never thought of. Neither, “YOU” or I can have every answer for everything all the time. The great advantage to being part of this family is the wealth of knowledge and experience that “YOU” can tap into. There are people here that can actually help and advise. They can not replace your medical team but perhaps “YOU” can ask them about your lack of ability to get and maintain at strong erections, about your vaginal dryness and lack of feeling. Both of which as best as I can understand are from lesions along your spinal cord. There are other things but they are a little too complicated for me.
Understand that this is a very complicated and confusing illness. The Central Nervous system(CNS) is large. The amount of nerves and axon connections in your body is substantial. Not every problem that “YOU” will face will have an answer that a doctor can fix. Some things we just have to learn to live with and find a way around if we can. Yes, we most certainly are on a long journey through our RRms lives, annoyingly it is a maze that we travel through. There are wrong turns, dead ends and pathways that seem to lead nowhere. Prepare yourself for this. Accept the disappointments but never let them break “YOU”. Shed a tear when “YOU” need to, but accept that as much as “YOU”may not like it, this is your path in this RRms life journey.
It is not a path that “YOU” or I can get off, we merely have to make it the best path that we can and accept that there are some deep potholes.
Royce (the ms writer)
You can live with the uncertainties of this condition, if you decide to.
