leading-with-chronic-illness

Leading Others Along the Way

On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?

Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?

So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform. 

I can, as can you, choose not to take on this role.  

We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.

If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind. 

What are my Responsibilities?

If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.

As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).

They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.

I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others. 

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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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A Culinary Education

Part of the process of raising a foodie is teaching a child how to cook and bake. If you want to appreciate what’s in front of you, you have to know how it’s made on a fundamental level.

Jai knowing how to cook and bake by the time he turns 18 is important to me. I want to know that he is able to take care of himself in the most basic ways without having to rely on others to do it for him. If despite knowing how to make meals for himself, he chooses fast food every night for months on end, I am okay with that. When he’s ready to impress a potential partner or roommate with his domestic skills, he’ll be able to do so.

To start this education, it means that I need to introduce him to the kitchen as soon as he’s ready. Right now I am letting it take a more natural route, letting him drift in and out of the kitchen, answering questions he might have and include him when I can. I don’t force the issue once he’s lost interest. I want the experience to be enjoyable, not frustrating for either of us.

Innate Helpers (and how to take Advantage)

Toddlers are innate helpers. They want to help parents around the house even when it makes more of a mess in the process. Unfortunately, there is a tendency for parents to discourage this “helping” desire because of the mess, which discourages the child’s desire to help as they grow older.

Rather than discourage this tendency, it’s recommended to encourage it as much as possible, which is what I do with Jai. I try not to take the task away from him when he makes more of a mess, but gently guide him towards the appropriate way to clean or pick up his stuff. At this point his responsibility level is minimal, but his enthusiasm is astronomical.

Right now, it makes more work for me, but I know that as he grows older he will be able to be more helpful. I am just waiting for his attention span, dexterity, and even a growth spurt or two to come in before he is able to help in a more meaningful way. Until that happens, though, I have to continue to encourage his help even when it slows me way down.

With that in mind, I work in more time to do certain tasks that I know he’ll be interested within the kitchen. Breakfast isn’t a quick ordeal because he has to help me crack the eggs, scramble them in a bowl, put the cooking spray cap on, and supervise my cooking of the eggs. What should take me 5 minutes from start to clean-up takes about 10 because we have to wash his hands after cracking the eggs in the bowl and little distractions that stop all progress for a few seconds.

There are days where he’ll hear the blender running and come rushing in to see what is happening. In those instances, I shut the blender off, show him what’s inside (though mostly pulverized), and let him push the button to get it started again.

There are other days where something I am working on bothers him for no explanation. I was trying to assemble my espresso stovetop maker the other day and he came in to check on what I was doing. He saw the utensil in my hands and got very upset. I tried to figure out what was bothering him about the maker, but he was just shaking his head, going “no, no, no” in an extremely concerned voice. I put it down and waited until he left the kitchen, 5 minutes later, before I tried to assemble and make my coffee again.

What it boils down to is respecting his wishes and independence in the kitchen, even at 23-months. I am respecting his desire to help, learn, and make (some) decisions with the end goal of him feeling comfortable helping me and learning more when he is ready.

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Final Thoughts: Home Life and Early Childhood Education

August was a fun and interesting month.

I did a lot of heavy lifting this month with my writing: talking about toxic friendships and how I dealt with them, and the importance of teaching toddler’s life lessons. I am ready for a three day weekend after all this writing!

I enjoyed the research I did for literacy and reading Peter Gray’s book Free to LearnI hope if you haven’t had a chance to yet, that you can check out the printables I made for cleaning and scheduling. I still need to make some tweaks to my daily schedule, but I am almost to a great place in my personal productivity.

I hope everyone has a safe and wonderful weekend and here’s to the first month of the fall, September! Can you smell the pumpkin spice already?


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Featured illustration credit: Michelle Melton Photography


Book Review: Free to Learn

As Jai grew more active, figuring out how to teach him effectively and prepare him for preschool became increasingly important as a parent. How to teach him was the trick…do I sit down with flashcards or do I let the learning happen more naturally based on his desires and interest?

First disclosure: I decided to do the unscientific thing and go with my gut over how I thought best to teach him: through play.

Parenting on instinct is important because no one knows their children better than a parent, but it can be problematic if not done responsibly. I rationalize that teaching a child through play will at best give him the tools he needs to learn complex concepts and at worst delays him for a year on milestone concepts, but nothing that can’t be made up with some rigor.

That said, if I was going to take this tactic of teaching style, I would need to find advice and experts to back it up. Second disclosure: I engaged in confirmation bias as I looked for tools to justify allowing my child to play all day without creating strict structure.

That’s how I stumbled upon Peter Gray’s book, Free to Learn. In my research on the book, I found that he highlighted the importance of allowing what comes naturally to children as a means to learn a variety of important life concepts and lessons.

What follows is my review of a book I chose on my own. I did not receive any compensation for this review.

Book Information

Title: Free to Learn
Author: Peter Gray
Date Published: 2013
Publisher: Basic Books
Pages: 274
Genre: Psychology
Goodreads Link
Amazon Link (non-affiliate)
Official Book Website


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