balance-harmony-chronic-illness

Balance & Harmony in Chronic Illness

2020 is now upon us, and that means a new blog theme for the year at MS Mommy Blog. 2020 is the year of vision: think about the importance of 20/20 vision, and the phrase “hindsight is 20/20.” It is also a year of balance, something that happens once a century. With that in mind, I wanted to focus this year’s theme on balance and harmony. While the year itself holds no power, we can use it to remind ourselves of the importance of incorporating balance and harmony in our lives with chronic illness.

I feel that focusing our energy on personal balance and harmony is timely considering the surge of global unrest and the role this year plays in American politics. I promise never to get political on this blog, but what I will advocate is finding ways to give yourself a break when the news gets to be too much. 

2020 is a year geared towards making a commitment to yourself and finding what keeps you centered in the face of politics, painful news stories, your health, your professional life, and your personal life. There’s a lot to handle this year, so now is the time to say, “I can handle it healthily.”

Let’s take a quick look for what to expect for the rest of this year.

Looking Ahead

In the coming months, look forward to posts on the following themes:

  • Moderation in our habits & mind
  • MS Awareness
  • Further examination with self-compassion in the face of physical limitations
  • Learning to balance strong emotions
  • Working through mental imbalance and bringing that into harmony
  • Embracing self-acceptance
  • The importance of work-life balance with a chronic illness
  • Embracing self-care for overall satisfaction
  • In the face of uncertainty, finding internal balance
  • Healing from disappointment and external turmoil
  • What is inner peace and how to find it

Balance & Harmony in a Chronic Illness

So what is balance and harmony with a chronic illness?

I am hoping that this year will help answer that question. I have my ideas of what it looks like for me, but as I do an in-depth examination into what others say on the matter, I might find my answer changes. I want to spend this year exploring this theme not just for myself, but for my readers as well.

Like last year, I will be chronicling my journey as I learn more about myself and what helps me manage my MS

New Features to the Blog

2020 is a year of different opportunities for me that I want to share with you. I plan on having several new features that run weekly or monthly on the blog. These include:

The weekly newsletter will be revamped shortly, so look for new newsletters in the coming weeks. If you haven’t signed up for it yet, please do so now!

Attention to Chronic Illness Bloggers!

The MS Mommy Blog is looking to collaborate with other chronic illness bloggers for this year. If you have a chronic illness blog and would like an opportunity to tap into the MS Mommy Blog audience, please contact me here. I look forward to hearing from you.


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Featured photo credit: Canva

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Assessing your Chronic Illness

Chronic illness takes many different paths. For some people, their illness takes over their lives, rendering them immobilized from disability. For others, it registers as a minor inconvenience where they can lead relatively “normal” lives. And there’s a chunk of people who fall somewhere in the middle. As we near the end of the year, it’s an excellent opportunity to assess our chronic illness objectively. As we look towards the new year, it allows us to enter 2020 with a fresh perspective about ourselves and our disease(s).

Often, we think we know where we fall in our chronic illness scale. Sometimes, our emotional mindset distorts the actual reality. I make this point as someone who fell into a trap believing I was worse than I was. It took several self-reflection sessions to realize I was not looking at my MS realistically.

Because I was unrealistic about my MS, I was not approaching my management effectively. I thought I couldn’t exercise, I couldn’t hold down work, and struggled for a time over becoming a mother. My distorted view of my abilities limited me for several years from achieving my personal goals.

Now, this isn’t the case for everyone. You may find that you do have a realistic grasp of your disease, and that’s an ideal place to be. You know what you need to do to manage it. However, if you haven’t taken the time to assess your illness and abilities, you may have some positive news after your reflection. You may find that you are more capable than you expected.

Assessing Your Wellness

There are times where we are painfully aware of our abilities and limitations. If diagnosed with an extreme form of your chronic illness, like Primary-Progressive or Secondary-Progressive MS, then there is a physical limit to your abilities. There is a clear delineation between what can and cannot be done.

But the majority of the people diagnosed with MS are initially diagnosed with RRMS, around 85%, which is a “milder” form of the disease. There is a range between those who barely feel their MS to those who undiagnosed PPMS or SPMS. And because of this range, it’s hard to be sure of our capabilities. While it might be tempting to do, we should never compare ourselves to others as the manifestation of the disease changes from person-to-person.

Easy to say but hard to do when it’s in our nature to measure ourselves by others. When you have celebrities out there publicly displaying the most extreme aspects of their MS, without providing any context (if they have RRMS, PPMS, or SPMS), it’s hard not to wonder: will that be me someday? Will I need an extreme form of drug therapy? Will I have to shave my head? Will I lose my voice? Will I need an expensive mobility scooter?

How bad will my chronic illness get, and should I be more cautious in how I live to avoid progressing the disease along?

Chances are, you won’t follow the same path as these celebrities, at least not right away. But ask yourself this: is the mental image of my disease, in its current state, matching reality? Am I making decisions on my condition based on what I see others doing, and not what I am capable of doing? Have I removed myself from the equation altogether and not effectively treating my disease?

To restate: do we fall into the trap of pre-maturely disabling ourselves because we have a distorted view of our illness?

I did. For years after getting my diagnosis, I assumed I would be permanently disabled by the time I hit forty. I started to act like I was on the path of disability, discouraging myself from actively treating my disease beyond medication. I had the attitude of “why bother?” for a lot of things in my life. If I had eight more quality years, why commit to something that would take ten years? 

It wasn’t until I committed to becoming a mother did I start to assess my abilities honestly. It took months after Jai’s birth for me to realize my perspective about my illness did not match reality. While I still deal with fatigue, I was not fast-tracked to immobility by forty as I thought. When I realized this was the case, I saw the limitations I kept experiencing surrounding my MS wasn’t from the disease but from me.

It was rather liberating when I came to this realization.

Going into the New Year with a Chronic Illness

Taking the time to assess your chronic illness provides you with the tools to decide how you want to approach the new year. If you’ve wanted to make some goals for yourself, but felt discouraged over whether you can do it or not, take time to assess and test yourself. 

For example, you may accurately assess that you cannot walk very far due to mobility issues. But you’ve always had a goal to walk a mile a day and were reasonably concerned about achieving said goal. Be adaptive, set the goal, and safely work yourself up to walking a mile a day. There will be days where you can achieve your mini-goals and days where you should honor your limitations. It may take you all year to work up to that mile, but what will you learn about yourself in that time?

Two things you will hopefully learn in the year: one, that you aren’t as limited by your illness as you thought. Two, you are more resilient than you might previously give yourself credit. Goals, if they are worth it to you, take time. Try not to feel discouraged if you find it takes longer than expected to reach your goal.

If you assessed your abilities and found yourself more capable than previously thought, like me, then take time to set goals and find your true limitations (in a healthy manner). Honor what your medical professional says, follow their guidelines, and work to break free of any mental blocks you’ve placed on yourself.

You may find that you are better managing your illness because you are allowing yourself to be more aware of what you can and cannot do. The benefits of goal-setting and working towards those goals are numerous and worth doing. 

The key is to take a chance and figure out where you stand in your illness and deciding if you are honest with yourself. Once you’ve done so, you never know what you can achieve in the new year.


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Reflecting on a Wellness Journey

December. We’ve reached the end of our wellness journey for the year. Now it’s time to start reflecting all we’ve accomplished. It’s hard to believe that 2019 is coming to a close; it feels like it was just January. Time marches forward, and we are looking at a new year in a few short weeks.

If you joined me on this wellness journey or participating on one of your own, it’s crucial to look back on all you’ve done these past eleven months. Doing so recognizes the changes you’ve made that work, see the changes you still need to make, and figure out your next step in life. It grants you awareness and validation for what you’ve been through, even if it feels like you’ve moved backward. Chances are, you haven’t moved back, just forwards at a slower rate.

For the rest of December, we’ll be spending some time reflecting on 2019 in anticipation of 2020. Hopefully, together, we can see our progress and feel good that we’ve made it through another year. Who knows what the new year will bring?

New opportunities, new chances, or new outlooks on our health.


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Autumn Rest

For whatever reason, I struggle to write in November. I don’t know if it has something to do with the shift in weather, the pending holiday season, or writing burnout. But every November since I started this blog, I struggle to write. Additionally, dealing with Lytton’s health issues makes it hard to keep up with my weekly writing.

Rather than adding to my stress, I am following my own advice and engaging in self-care. I will be taking the month off from creating new content. If you are a newsletter subscriber, you will still get a new email each Friday morning. If you aren’t subscribed, it’s never too late to join the 2019 wellness challenge.

I will be revisiting some of my older posts for the month on the blog, updating the content with fresh thoughts when appropriate. Join me over at Facebook and Twitter for related articles to my posts.

I will re-start new content on December 2nd, so it won’t be a long wait. I have a gift for all my readers available for download towards the end of the holiday season, so be ready!

Have an excellent November, and I will see you in December.


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Featured photo credit: Canva


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Managing Grief with Chronic Illness

“I know that the ones who love us will miss us.”

Keanu Reeves, on what happens after death

Over the past two weeks, I’ve faced an emotion I haven’t dealt with in years. I’ve written about grief before, in the context of coping with a chronic illness diagnosis, but I haven’t reflected on physically losing someone. Relationships come and go, and we mourn losing our connection to a friend, but when death enters the picture, there is a finality to the whole situation we cannot come back. Living with a chronic illness means a strong emotional episode can trigger an exacerbation. That can set us back days, weeks, or even months.

So how do we manage an emotion like grief? 

It’s difficult, because there’s no right way for each person. There are healthy ways to manage grief and unhealthy ways. With a chronic illness, we must find the healthiest way to manage our grief to protect our wellbeing. What shape that takes depend on ourselves.

My Grief

For now, no one is dead in my life. But I have the opportunity to prepare for the death of a loved one. Death can surprise us, or we can have the grace of a timeline. My cat, Lytton, is undergoing some major health concerns. I’ve had Lytton for over ten years, and he’s a significant presence in my life. While he is eleven, I always assumed I would have more time with him.

With each emergency visit and specialist conversation, we are left with the feeling that the end is coming sooner than expected.

Knowing that one of my sources of emotional comfort and napping buddy may soon pass has thrown me headlong into the grieving cycle. I’ve had to reassess priorities and recognize the impact grief will have on my MS if I am not careful.

What follows are some thoughts I’ve had surrounding death and loss. 

Another Thing Chronic Illness Takes…

Chronic illness takes away our ability to grieve in the manner we wish. We can grieve however we want, without regard to our disease, absolutely. But if we have people who depend on us, or we don’t want to deal with a problematic exacerbation, we must keep one eye open to our health.

We must contain and manage our grief.

I am not suggesting “suck it up” or “get over it,” attitudes. No, grieve as long as needed in the necessary form. But be aware of what you are doing and how it might impact your health. Grief is stressful, and if we allow that stress to overwhelm us, we can make ourselves sick.

In the most profound moments of grief, we often do not care about our health. Nothing matters except the loss. Despite how it feels, the intensest moments of pain will pass, and our lives will return to the new normal without the individual. Should we stop taking care of ourselves during our period of grieving, and that helps intensify an exacerbation, the effects of the flare-up may be lifelong. 

To reframe what I mean through an example (this is for illustrative purposes, it hasn’t happened): I allow myself to get so worked up over Lytton’s death that I get an exacerbation. This leads me to lose function of my leg due to numbness, and I must be hospitalized for intervenous steroids. While I have Relapse-Remitting MS, it doesn’t guarantee my leg functionality goes back to 100%. Instead, I leave the hospital with a permanent 80% functionality of that leg. I can no longer achieve the specific goals I had for myself, and I must adapt my life to a new normal. 

I may grieve for Lytton’s death over several years, but I potentially have at least thirty more years to go beyond that. For the few months of intense emotional grief, by not taking preventative measures to balance my health and despair, I’ve impacted the rest of my life. Additionally, Jai loses his mother while I am in the hospital, and I’ve permanently reduced my ability to interact with him. 

I will probably feel guilty for not taking care of myself, needing to be hospitalized, and the impact of the exacerbation on my overall health. All three stemming from a situation where I could have prevented the flare-up through self-care.

Note: with autoimmune/chronic illness, we cannot prevent our flare-ups. They will happen when they happen. We can, however, take steps to minimize them from occurring. It’s remembering to take these steps while grieving to help prevent or lessen the impact of an exacerbation.

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