Like A Child

I hate this MS brain of mine.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” ~ Maya Angelou

As a child, I couldn’t wait to be all grown up. I hated how adults unapologetically and constantly made decisions for me. I wanted to make my own choices. What I failed to realize is that being a decision maker also makes you responsible for the outcomes associated.

I learned that lesson during my teenage years by making bad choices, but as I matured I made better choices and my mistakes decreased. Now when I decide to do something, nine times out of ten, I recognize when it is a bad choice. If I elect to eat three cupcakes instead of one or if I stay up late watching a movie despite having an early morning appointment, I accept my bad choice. I also prepare myself to pay the consequences for that choice.

If only all of my decisions were so trivial everything would be all right! I run into problems when I have to make important decisions. Making the wrong choice in these situations can lead to treacherous outcomes. That scares me.

Since being diagnosed, I have been on various MS medications. Regardless of counsel from my doctors the decisions to switch, start, and stop certain drugs have been ultimately up to me.

Recently I was faced with the decision to begin taking a new treatment and I chose to opt in. I don’t know about you but I am always looking for that miracle cure. I was hoping to see some inkling of improvement but that really has not happened. Every time I get fatigued or when I can barely get out of bed, I question my decision. I know this is not relational thinking but I can’t help it. I am worrying that maybe I made the wrong choice and should have stayed on my previous medication.

I hate this MS brain of mine. It is causing me to second guess my every move. Of late, brain fog seems to be increasingly blurring my cognitive reasoning abilities. Because of my decreased aptitude, when I make life-changing decisions my husband is always with me. We talk and weigh our options but thankfully in the end the final determination is mine. When he disagrees with me I fight him tooth and nail.

One time in order to win my argument I even proclaimed, “It’s my life and this is what I want to do”. He ultimately gave in to that one, but I am not sure how long he will allow it if I continually make bad choices. I don’t know if changing my medication was a bad choice but right now it sure feels that way. That scares me, too.

Making my own choices is my last bit of independence and I’m not ready to relinquish that privilege. When my decisions are overruled I feel belittled and sometimes embarrassed if done in public. My opinion is being reduced to one of an adolescent. I do recognize that I may have to defer more of my decisions to family as my decision-making abilities decrease. I just wish there was a way I could do this without feeling like a child again.
Original article appeared on -The National MS Society Blog

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

13 thoughts on “Like A Child”

  1. I think we all can relate..I feel the same..I can’t make decisions..but I do anyways..I’m terrified of making the,wrong is,what it is…I’m just ask my husband and family now if they think its,right..that’s usually a good dose of reality for me.cause I taught my thoughts tend to come,back which in turn helps,me with decision making..if that makes,sense..weird hu? most difficult task is,filling out paperwork..memory is,leaving..i can’t tell you what day it is.without looking at a,calendar eyes,are getting worse. I know I will eventually be blind…I’m not looking forward to that wheel chair.for, left knee just gives out and I fall..most days,I feel so sick at my stomack. I just can’t function..on my good,days.i do too day I pay dearly..There is,no balance with this..that I’ve found…good luck to you..I hope it gets better for story.well I don’t know how it ends yet…But for will be fireworks and big booms..always hugs..

  2. Nicole, I know it’s hard to give up your right to make decisions, but you are fortunate to have in Tom someone who knows you, loves you, and wants only good things for you. Believe that and it will help you to know he will make the right decisions for you both as a couple. He is able to think clearly and by now you know him, and he definitely knows you.
    Keep the lines of communication open between you two, letting him know just how you feel and give him your permission to make those life-changing decisions that you are unable to make. I am praying for both of you to have strength to continue your very busy lives. I love you and Tom. I hope you continue your blog , it is so genuine. You are speaking for a lot of MS patients, your words resonate because you speak of your own experiences with MS. Keep writing, stay strong, and let Tom help you.

  3. I am now SPMS. Not many treatment options. I waited approx 2 years to get into a research study for an oral MS drug. The delay was due to red tape from the drug company. Funding, etc..I finally started the trial, after waiting for so long.
    The first 4 months were fine. No problems with tolerating the drug, closely monitored by my Neuro, etc.

    Then in December, I had 2 grand mal seizures. Obviously, I am not taking the drug anymore.

    I need some kind of treatment. So frustrating and scary.

  4. I am terrified of losing my mind/cognitive abilities. I think of myself as a smart person and that has been a descriptor that has been used both by me and about me and by others to describe me since I was a child. I am a Spanish teacher and language is also so integral to me. I am so terrified of having that linguistic ability and cognitive functioning deteriorate.

    I’m new to having ms, just diagnosed this spring at 38yo.

    Best wishes to all who read this.

  5. The advice I usually give on whether it is time to switch meds is to treat it like sports. (I can’t help it. I’m a guy.) If you feel like crap and are unable to function, treat it like a losing team cutting a player. Even if it was the best player on the team, the team had already shown an ability to lose with the player. So the worst that can happen is a switch that still leaves a person feeling like poo unable to function, but at least there is a hope for better.

  6. Thank you for this post. I relate more than I would like, but thankfully, my family has gently guided me through some very bad decisions even though it means more work for them. I have given up driving just because I forget not to go up an off ramp just because I could get to my destination faster or change lanes without looking, ect. Much love to you and again, thank you so much for this post!

  7. I can totally relate to your post Nicole. I have recently started an oral pill and doubt my decision almost every day. It is often a blurred line as to whether the meds are helping or hurting. I usually resort to favoring hope and decide to risk it and trust. I just miss easy thoughtless decisions that don’t have such dramatic repercussions. Much love Nicole.

  8. Love your posts. Please don’t stop them. We who follow your blog love you and look forward to reading it. So many of them I can relate to.

  9. Hi Nicole AMEN! The MS fog brain is annoying. I constantly remind my children (they are all grown now) that I am still coherent and able to make my own decisions, and if I should live to be elderly than just maybe they can tell me how it should be. A lot of it is joking, however, it makes me think about my future and how MS may continue to cloud my thought process. I will not go down without a fight! Thinking ahead though, perhaps it will be payback to the kids as I will give them a run for their money. Stay strong !

  10. Hugs my friend everything you said was wow so right glad u were able to make the decision to try something new and I hope it’s just that your system has to get used to it. I hope it starts working for u real soon

  11. Nicole, I have personally experienced your need to
    Be independent. I smile at you when you excert your power to
    Decide things for yourself even if the decision you are making
    Is not the right one. This is your FIRE and your RIGHT! I am confident that
    When and if the time comes for you to give your husband and family complete control
    Of the decisions needed concerning your life you will do the right thing. But, as one of your family members I will ALWAYS VALUE YOUR SUGGESTIONS, FEELINGS on how you want to approach things. Alternately I respect all your decisions. These types of decisions EVERYONE EXPERIENCES and either reap the good or suffer from the wrong choice made and in the end “THAT’S just LIFE”. With ony love, GAIL!

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