I’ve written about my two major MS attacks (here and here), but I thought I would write what a typical “good day” is like for me living with MS. I would say roughly 90% of my days are good… the bad come few and far between and my bad days are nothing compared to most… But I’ll start with the good to help inform, educate, and give hope to those newly diagnosed and any others who want to know more about living with MS.
5:00 am: Wake up, get ready to run on run days/sleep in until 6:30 on non run days :).
5:30 am: Run 3 miles on Tues/Thurs and long runs on Saturdays. During my runs, I sometimes experience very minor MS symptoms such as tingling in my face, toes, or arm. Sometimes my lip will quiver. All of these go away and no longer scare me. My neurologist says it is fine to push through them as long as they don’t make me feel off balance or like I’m going to fall.
6:30 am: Weekdays–get ready for work, weekends–usually still running 🙂
8:00 am: Weekdays–go to work/Weekends–get ready for the day
8:30 am: Breakfast… this is non-negotiable. My pill (Tecfidera) needs to be taken at the same time in the morning and evening and I need to take it with food to avoid stomach side effects and hopefully keep the “flushing” side effect minimal. Every single day of my life I have a banana with my pills. On weekends I usually also have eggs. Sometimes I throw in an orange too if I’m extra hungry, but always always a banana. It’s the only thing that really helps with the side-effects for me. Along with my morning Tecfidera, I take vitamin C, biotin, and an allergy pill.
Mornings on work days: My job requires me to multi-task, working both with numbers and with people. Some days are more demanding than others and on good days, I don’t miss a beat. In fact, since my diet change, I feel as though my concentration and ability to juggle many things and stay on top of them has improved. I enjoy the tasks and love helping people so it’s a perfect fit for me.
Mornings on weekends: We’re typically busy with our children or volunteering for our church. We love to be active and involved and try to stay pretty busy. We do also enjoy lazy days when we get the chance!
12:00 pm: Lunch. I try to eat on a schedule just because it helps with my medication. My favorite lunch is a spinach salad with a chicken and apple sausage and guacamole. I usually also have a piece of fruit and a larabar with some black coffee.
Afternoons on work days: More multi-tasking and usually increased phone calls and visitors, but I usually handle it all well. I prefer the busier days because they fly by! And I love leaving at the end of the day feeling like I’ve accomplished a lot.
Evenings on weekdays: I’m a taxi. Most moms can relate. I help run carpool for practices and squeeze in time to make dinner and take care of household tasks. Dinner most weeknights is leftovers or something super easy to throw together. I have learned I stress if I try to make a big meal on weeknights so I just avoid it all together. My family is super supportive and is just fine with that.
Evenings on weekends: As long as we aren’t out having fun or watching our kids do something cool, we’re at home binge-watching The Office or some other show on Netflix. On weekends, I try to make huge dinners so that we have leftovers during the week. I’ve found it reduces my stress during the week if I take the time and effort to prepare dinners on the weekend. Thankfully my family likes leftovers :). My husband loves to help me cook on the weekends and that is a huge help (he works most evenings during the week).
9:00 pm: Evening snack and take my second Tecfidera of the day. I usually try to eat something with a little fat in it because I also take a Vitamin D and it needs fat to absorb. My evening snacks vary and usually depend on what we had for dinner. I don’t eat much, just enough to keep the stomach cramps away. Along with the Tec and D, I take magnesium, and a multivitamin. These vitamins usually upset my stomach, so I don’t ever take them in the morning. I don’t notice my stomach being upset while I sleep so it works to take them at night. If we’re at an event, eating and taking my pills is a bit tough. I just try to pack something with me and slip out to the bathroom to take them. It’s important to try to take my pills at the same time every day.
10:30 pm: Bed. I try very hard to be in bed by 10:00 on most nights and asleep by 10:30 pm. If I don’t, it can make for a “bad day” the next day and I strive to avoid that. I sleep very good on most nights and usually wake up refreshed the next day. Again, I credit my diet with a lot of that. Someday I’ll write what a typical day was like before my diagnosis and diet change just so people can appreciate how vastly my life has improved.
That wraps it up. I will say my days are more structured than they were before diagnosis and maybe less spontaneous, but they are very good and I’ve found that I thrive with structure. My health is a priority and that’s a huge positive change.
I think it’s important to note that any and all food changes, medications, vitamin supplements, and health regimens have been discussed at length with my neurologist. She’s the expert and I would not and will not go against her advice. I trust her completely. That’s the best advice I can give any new diagnosed MS patient–find a neurologist you TRUST. And if you don’t trust the one you’re with, switch. It’s too important.