A more structured life with Multiple Sclerosis

A more structured life with Multiple Sclerosis

This was a very long week. Came off an incredible high of my amazing weekend at the spirit junkie master class. Followed right by my doctor for my shoulder, getting a Cortizone shot and finally feeling better.  Going right back to New York City for another neurologist check up with my specialist. Wednesday through Thursday saw 24 hours of drama with my daughter and her boyfriend. Luckily, that ended with a three hour dinner with friends, lousy food but great company.  To wake up to a beautiful Friday with nothing to do. Perfectly fine by me.

I find, even though I don’t do much during the week,I still need a day or two where I do nothing. My body needs that downtime where I could just rest and not have to do anything or be anywhere.  I don’t know if it’s just me or all people with MS, but spontaneity is not a thing I can do anymore. My life has to be very structured and very planned. Deviations are both difficult for me to maneuver and hard for me to accept.  Unless it’s a cancellation of something I was doing, that’s fine. What I find difficult is if someone calls me up and says want to go to dinner tonight. I can’t just muster up strength. Dinner plans, parties, or events all have to be planned energy wise for me. If I have it on my calendar I plan for it accordingly otherwise my body just won’t have the stamina to get through.  Sure, I’m having a really good day and something gets thrown at me and I might say yes, but those are really rare. My life has become a very structured and organized stage.

I know the next couple of weeks have a lot going on. Besides my normal MS activities, there’s a lot going on with my daughter pre-graduation, pre-prom, I’m in the city a bunch of times for her college, and then I have a lot going on as I’m in the process of getting an aid for myself.  Plus I have a doctor appointments and stuff that has to be done before my new infusion of Ocrevus (Ocrelizamab) in July.  However, all these things are scheduled, and I have to conserve my energy accordingly. Not that that’s so easy, but it has to be done.  June is going to be a tough month energy wise, but by July I’m hoping that everything calms down. Life is now a structured balance. My organized orchestra where everything runs the smoothest as long as no instruments play a new tune.

2 thoughts on “A more structured life with Multiple Sclerosis

  1. I am with you all the way! I too find if I’ve had a very active day, I need to follow up with a slow day. Specially when I travel. My neurologist has prescribed Ocrevus and Blue Cross Blue Shield has approved it, but now the infusion center here needs to be trained to give it. I was told six weeks. I probably should not hold my breath!

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