Daily Life for me

Good afternoon my friends! I have been getting an incredible amount of support and I can’t thank you guys enough!

Today I want to share a little about what it’s like on a typical day for me.  I have medication that helps my muscles receive the chemical that helps makes them move.  My CMS causes my nerve endings to open and close too quickly so the chemical can’t reach my muscles for them to work properly.  The medication that I take allows my nerve endings to stay open longer and allows more of the chemical to get to my muscles.  I take the two medications, 3 4 DAP and Mestinon, every four hours, four times a day.  For most people, they don’t have to plan their day around much (maybe besides work), but for me, I have to either plan my day around when I take my medicine or plan my medicine around my day.  It may not seem like that much of a hurdle, and in the grand scheme of things it’s not, but when you want to spontaneously do something or hang out with friends, it makes it difficult.  The medicine that I take is amazing and it has allowed me to do things like go to college on my own, get a job, and hang out with my friends without one of my parents tagging along, and let’s face it, that’s not fun for anyone.

Let me take you through a typical day in my life with CMS;  When I wake up in the morning, I feel pretty weak because I haven’t had my medication all night so simply getting out of bed is strenuous on my body.  Once I make it out of bed, I go into the kitchen to take my medicine and wait twenty to thirty minutes for them to start working.  In the meantime, on a school day that is, I shower and get ready for the day with very little strength because the medicine hasn’t kicked in yet.  Depending on my class schedule, I take my medicine accordingly to minimize the chance of having to take them in the middle of class or when I am walking to my next one.

When the four-hour mark is close, I can feel my body weaken and I know that I need my meds again.  Most of the time, I don’t need to look at the clock because my body tells me, but I do get distracted easily with whatever I am currently doing.  Before I got the medication, it was difficult for me to do simple tasks such as put my hair in a ponytail, write down notes in class, or wash my own hair.

Hanging out with friends has become much easier since the diagnosis and the medication.  I still have to plan the activities around my med schedule, but at least I can do almost anything I want.  Walking for a long period of time is not something that I can do, but walking around places like downtown Portsmouth is doable because there are so many places to sit and take a break so it’s not just constant walking.

Something not all of you will know (but if you know me, you know this) is that my voice isn’t clear or very strong.  This is due to my vocal cords being paralyzed and all the air I push up from my lungs to speak goes through them and makes my voice sound breathy and airy, almost like a whisper.  It takes time, but once people get the hang of it, I can be understood well.  The medicine that I am on has made my voice stronger so people can hear me a bit better than they could before.   This makes it easier for me to feel confident in going up to people and introducing myself or asking questions in class.

Both of the medications have been life-changing for me and I honestly do not think I would be where I am today, in college and pursuing my dream of becoming a journalist.

That’s a brief (even if slightly long-winded) explanation of a typical day for me.  If you have any questions, feel free to drop them in the comments section and I will answer them in another post!  Thank you so much for reading and remember, stay uniquely you!

P.S. While reading this over, the title reminds me of the song from Pirates of the Caribbean or Peter Pan “A Pirates Life for Me”.  This is just how my brain works, I don’t question it, I just roll with it.

6 thoughts on “Daily Life for me

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  1. Rosie, I applaud your Blog and you. It’s a wonderful way to get to know astonishing you much better. Congratulations on this good idea of educating so many of us.
    Sue Zuckert


    1. Thank you, Sue. This is something I’ve wanted to do for a while, I just didn’t know exactly how. Thank you for your love and support!


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