Choose Your Own Adventure: A Day in the Life

One of my favorite books when I was a kid was a Choose Your Own Adventure book, in which I chased Carmen Sandiego all over the globe. Paragraph by paragraph, I decided what my next move would be in order to find her. It was fun and, without me knowing it at the time, it taught me how to make educated choices and that, based on those choices, there would be some sort of consequence, no matter the outcome.

Having a disease like MS is a lot like a Choose Your Own Adventure book. My entire day is filled with important decisions to make that will carry a great impact, even lasting into the next few days. For example, have you ever spent 20-30 minutes deciding what outfit to wear? No, not because you want to keep up with your trendy coworker, avoid wearing the same dress as someone else at a party, or because you think your butt looks big in those pants. Rather, have you ever had to consider how buttoning tiny buttons first thing in the morning can be difficult? Or that a waistband or seam might be digging into a recent injection site all day? Or that your medication has caused you to bloat and your clothes now fit differently? Will the fabrics you choose make your skin crawl or feel itchier than normal?  What temperature will it be wherever you are spending the majority of your day? If you don’t plan ahead and it’s cold, your joints might feel stiff or your fingers and toes might be numb. If you wear too many layers, however, you might run into issues because you’re running to the restroom every five minutes. Or if you get too warm, your symptoms may intensify and you may spend the day feeling foggy and tingly.

All of these things to consider — just in deciding what to wear — can affect how much your energy depletes throughout the course of a day and how long it may take for your body and your focus to recover. Now imagine how many decisions we make throughout the day, no matter how small or routine. Each decision we make is a withdrawal from our energy reserve. How large or small that withdrawal is is determined by how we come to reach our final decisions and how much we’re willing to sacrifice the next day.

Since being diagnosed, I’ve learned how to budget my energy better throughout the day in a way that works for me. I still have much room for improvement and I certainly don’t always listen to my body, but as each day goes by, I do feel more in tune and know when I need to say "no" and just take care of myself. Many times, I only plan one or two things for a day or even sneak a quick nap or two in to lessen the recovery time I’ll need later.

What tricks do you use to make the most of your adventure?
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Cat

Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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    8 Comments

  • David Maskalick   Jan 10, 2017 3:39 PM
    I was diagnosed in 1987 when I was nearly 30 years old and three years after I had received my Ph.D. in biophysical semisynthetic protein chemistry.  In 1984 I had accepted a senior biochemist job offer in a biotechnology effort of a pharmaceutical company. So between 1984 and 1987 I had been contributing to and directing the efforts of a chemist and a technician to develop methods to purify certain protein products from cells designed to make the protein in a large fermentation vessel. We first worked in the laboratory to discover and develop the best methods to recover the purified protein product, i.e., the protein purification process. Then we used the same protein purification process at a larger scale in the pilot plant to generate a much larger amount of the purified protein product to be used in clinical trials. If the clinical trials demonstrated the purified protein product could be used to treat a medical condition I would then work with chemical engineers to design a manufacturing facility that would use the protein purification process to generate enough purified protein product to satisfy anticipated demand for it in the medical and pharmaceutical marketplace.

    In 1987 I was experiencing extreme fatigue, running to the bathroom all the time, brain fog, limited memory, and I took longer to solve complex problems than I used to be able to do quickly. Oh I also was having trouble driving safely, so I change the route I took to work so I wouldn’t be driving fast on the interstate highways which took me longer to get there but was much safer for me. I had been dealing with the brain fog and reduced problem solving ability by treating my fatigue with the caffeine in four shot lattes. That solution also increased the number of times I was running to the bathroom each day so I would always find the bathroom on my way to meetings in different locations. I dealt with my limited memory by writing down everything all the time and keeping my notes in labelled folders or transcribing them into my notebooks.

    Then my GP recommended I see a neurologist since they thought I might either have brain cancer or multiple sclerosis. Well after the neurologist tested my spinal fluid and viewed an MRI of my brain I was diagnosed with MS. Well at least I didn’t have brain cancer. :) My neurologist also sent me to a urologist who prescribed medicine to help control my running to the bathroom, and that worked great. My neurologist also prescribed a medicine to give me more energy which also helped to reduce my fatigue. This helped me since I was promoted to research scientist in 1990.

    Later in the 1990’s I started giving myself Copaxone injections.
    Also in the 1990’s I started having double vision towards the end of the day when I was becoming fatigued, so my neurologist sent me to see a neuroopthalmologist who prescribed prism lenses which corrected my eyes so I didn’t see double anymore. The prism lenses helped reduce how fatigued I felt after reading and after driving. So I was able to continue my career in biotechnology protein purification until after the seminar I delivered to management as part of my annual performance review in 1999 when I couldn’t answer a a simple question I was asked because I couldn’t remember. After management told me they would have to demote me because of my poor performance review I told them about my MS. Then management recommended I take long term disability beginning in 2000.
  • tfs   Jan 11, 2017 9:06 AM
    This gave me pause. I think it is very true that these simple decisions really drain our energy. Thank You Cat. The race for the bathroom and the struggle with the belt can be amusing at best and humiliating at worst. We are bathroom warriors. We are amazing men and women trying our best.
  • Susan Lesperance   Jan 12, 2017 8:39 AM
    Cat, once again you have provided your readers with great insight into living with MS. By using "Choosing Your Own Adventure" books, you provide something we are familiar with and put it into the context of your MS journey. By understanding that even a simple task such as getting dressed is, for you, based on need rather than by whimsy or how your butt feels that day. Your readers are given a window into your life...and the peek in provides better understanding, more compassion and hopefully inspires them to help in the cause to fund much needed research. Applause applause. Well done YOU!
  • GAS   Jan 17, 2017 7:25 AM
    What a great write up! Everything you said is so true. I've had MS since 1978. I guess I've never thought of it as having an energy bank! But that is spot on! Great write up...
  • Jayster.k.wiseguy@gmail.com   Jan 21, 2017 1:29 PM
    every day is a new adventure in coping with the MS...if you're lucky brain functions are left intact...one never knows what adventures are waiting...best work with what you've got...and go with that...used to be a machine designer...but now am an artist...some say every painting is a masterpiece~ see if I can share here~ Jayster
  • Vickie Lee   Jan 30, 2017 7:08 PM
    Thanks for sharing!
  • BrookeLowry  Feb 7, 2017 4:26 PM
    How do I adjust? Let's see, if I can see? First I do a personal physical and emotional check. If you have MS, you have done it too. But I also got insulin dependent diabetes, and fibromyalgia. I check and adjust everything all day long. It keeps me going, and it is what works for me. ;)
  • Nancy W   Feb 8, 2017 11:43 AM
    Your posts are uplifting to me. I am inspired by resilient people like you. I'm trying to be but it's hard to teach an old dog. Haha. Today I turned 53. I just want to know if there's days you don't get out of bed. Do you exercise or meditate. You seem so zen and cool. So I like your blogs.