a-typical-day-with-MS

A Typical Day with MS

MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.

A Typical Day with MS

If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.

My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.

After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.

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2018: A Reflection

Reflecting on 2018, it was another decent year for me. It had relatively few downs and quite a few ups. I learned even more about myself, some of the stuff I already figured and other things that surprised me.

In what is becoming a tradition for the blog, I’ve decided to reflect upon the bigger lessons and victories I learned throughout the year and some personal goals I have for 2019.

The Down Points

  • I did a lot of emotional heavy lifting this year. I realized I had several friendships that left a negative impact on me. I documented what I learned about this in my two posts about toxic friends (Part 1 & Part 2) and what I learned about my role in these relationships.
  • My limitations were made obvious at several points throughout the year. This ranged from temporal limitations, i.e. not having enough time in the day to accomplish everything I wanted; to fatigue still being a major roadblock on a day-to-day basis.
  • I did have a few mild flare-ups this year, but nothing major or of huge concern. I found a spot in my vision that was more of an annoyance than anything else, though it went away rather quickly as soon as I de-stressed. A few moments of numbness, and my L’Hermittes Sign making an appearance when I was particularly stressed and sleep-deprived. I did experience a new symptom: MS Hug and that wasn’t very loving at all.
  • I wasn’t as strict with maintaining a healthy diet throughout the entire year and have gone back to some very bad eating habits for the holidays. My mindset shifted half-way through the year of how I viewed myself (more on that below), but my eating habits haven’t followed.

The Positive Points

  • In reflecting on the negative impact of toxic friendships, it hurt to lose what I deemed to be decent friends, but I found that by no longer allowing the negativity I had less stress overall. It was particularly freeing to start recognizing that I could choose to be with those who treat me well, rather than settling to be around those who didn’t.
  • 2018 was a less stressful year for me overall. That isn’t to say there wasn’t stress in my life or stressful periods (many of my own making), but I found that I handled stress so much better this year than I have in the past which has led me to feel more content with myself.
  • I officially spent the entire year in a healthy weight range which was a first in a long time. In fact, I don’t remember when was the last time I spent such a long period of time in a healthy BMI. Besides feeling good emotionally, I feel fantastic physically with more energy to keep up with Jai.
  • Ash and I were talking a while back and he made a great point about who I am now physically speaking. I am a runner and an athlete, something I never thought I would even consider myself, especially growing up with asthma. I completed 2 half marathons this year, PR’d in several of my races and have a full year of running planned in 2019. That said, my eating habits haven’t necessarily matched the runner’s lifestyle, but I have a plan on handling that this coming year
  • On paper, I always viewed my MS as an opportunity to refocus my priorities and to a certain extent I did. But this year I really committed to turning my diagnosis into something positive thing. I finally made the “someday” changes I’ve wanted to make for a decade or so.

MS Mommy Blog

The blog still is such a positive influence in my life and I’ve learned a few things about myself because of it. Without the ability to truly reflect on my relationships and MS, I probably would still be stuck in an emotional rut. But because I decided that I needed to write about my MS story and how I was coping with some heavy emotional concerns, I did a deeper self-reflection that I think made a lasting impact on my overall attitude.

I found that while it was nice to share some of my parenting thoughts and experiences, the blog really needs to refocus itself on healthy living and living with a Chronic Illness. I wanted that to be the main focus of the blog when I started it, but I got off track in 2018. I have begun the process revamping the blog with that in mind, and all will be revealed in the new year.

What I’ve Learned in 2018

To truly let things go, not just say that I am letting it go.

When I let things go, it makes for less stress in the long-term. I also recognized there is a lot of negativity in the world and my contributing to it by being negative back or dwelling too much on the negative wasn’t helping anyone, nor providing a positive example for Jai.

I have learned that the best way to be stress-free is to plan ahead in many aspects of my life. Not regimented with no flexibility, but being more prepared, writing things down either in a list or as a plan, and therefore minimizing stress. When I have a list or plan of action for the day, I find I am more efficient which makes me happy because I dislike feeling unproductive.

It sounds cliche, but I finally understand – or rediscovered – what they mean when “you can do anything if you put your mind to it.” It takes a lot of work, but I am finally seeing the personal reward for the running, blogging, and self-reflection. I’m finding it’s feeding into itself and I want to keep doing more.

Making 2019 My Year

For 2019, this is where I want to be:

  • Accept that I am an athlete now and that I should really commit to an athlete’s lifestyle. This includes eating habits, training, and making decisions that will help me reach my personal running goals.
  • Additionally, I want to continue to be meeting and exceeding my personal records in running. I don’t think I will ever place in any races, but I will push myself to get times I never thought I would imagine for myself. Several years ago I couldn’t imagine sustaining a 10-minute mile. I ran that for Thanksgiving. How fast will I be this time next year?
  • Continuing to embrace a calm, positive, and stress-free living. Learning to not feel guilty when I decide that this mindset is more important to my overall health than giving into previous behaviors.
  • Having a more “ant” attitude in life. Remember Aesop’s fable about the Ant and the Grasshopper? I have become more ant-like as a means of managing my life, blog, and parenting, which is to say that I plan & prep ahead of time in order to make more time for Jai throughout the day. I will be more focused on getting ahead as a form of disease-management.
  • Becoming the person I saw myself being when I reflected on my life-goals at 15. I will be elaborating more on what this means over the upcoming weeks, but I want to be what 15-year-old me wanted me to be at 35.

2019 As a Teaching Opportunity

Last year I gave 2018 the motto keep letting it go, no distractions, and push forward.” I found that I stuck by this motto pretty closely and it helped keep me moving forward emotionally, mentally, and physically. I want to keep this motto in the back of my mind and add a new one:

“I am the only person who can make the changes that matter in my life. It doesn’t matter how long it takes, if I work hard enough, I will see a positive outcome in all the work I do.”

I am going to embrace all that 2019 has to offer, for good and for bad and see where the coming year takes me.


Want to join me in a successful 2019?

Before you go, please sign-up for the new MS Mommy Blog newsletter. It will be sent out once a week on Fridays in lieu of my normal Friday posts (no spam or excess emails, I promise!). In the newsletter, you’ll find the 2019 Wellness Challenge, tips, articles, and freebies exclusively for newsletter subscribers.

This challenge will be specifically geared towards people with a chronic illness (not just MS), though people who do not have a chronic illness are welcome and encouraged to join us this year.

This challenge is based on making gentle and gradual changes both superficially and on a deeper level. No judgments will be made and this challenge will be tailored to you and your needs. At MS Mommy Blog, we’re about being supportive and loving to ourselves and others.


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Checking In: MS Symptoms

What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better, but on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a cold like this they may feel wiped out but are able to go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep this afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key cause of flare-ups so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick, but I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but since having Jai it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days means that I have more energy throughout the day and days I do yoga there might be a greater dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no appreciable changes to my MS symptoms.

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Love & MS

We don’t get to choose whether or not we get MS, nor do we get to choose when we get that diagnosis. For some, it comes while in a relationship and for others it comes outside of one.

Either scenario forces the following self-reflection: does my partner stay with me? and, do I disclose my situation on a date?

MS is difficult because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosis: is my partner with me because they feel obligated? do they resent having to care for me? are they only interested in me because they have to “fix” me? what happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home).

They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you everytime you want to have a conversation with someone so you forget what you were saying and is up at all hours of the night making it hard for anyone to sleep.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. As a person with the diagnosis, I am trying to learn what I am capable of doing and what my limitations are. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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