assessing-chronic-illness

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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Featured photo credit: Canva

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Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


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

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis 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 every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

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. In addition to maintaining a relationship, I am trying to learn my limitations. 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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Checking In: MS Symptoms

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


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. Still, 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 virus like this, they may feel wiped out but can 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 crucial example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm. Still, infections are a significant 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. Still, 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.

I usually wouldn’t write about getting sick factoring into how I am currently feeling because I tend not to get sick all that often. Still, 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. I am doing what is best for my overall health, and that is more important. My brain fog and memory issues haven’t lessened, 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 mean that I have more energy throughout the day. On the days I only do yoga, there might be a more significant 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 apparent changes to my MS symptoms.

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parenting-with-a-disability

Parenting with a Disability

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


This is the final week in a 3-week series on parenting observations. Week one is based on gentle parentingweek two is about parenting with compassion, and week three is about parenting with a disability.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my own research and conclusions as possible suggestions for others out there; therefore, these posts will be as objective as possible. When it comes to parenting: if the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgment.


For many people, parenthood is fraught with challenges: getting enough sleep, the terrible twos, and the need for independence as children grow older. For a select few, there is the added challenge of balancing parenting and a disability of some sort.

Parenting without a disability is difficult, and parenting with one presents its own unique challenges. With some adaptations, parenting with a disability is no harder than parenting without one. Remember: it’s comparing apples and oranges; each type is challenging and straightforward in their own ways.

The key is to know what the limits are, having a support system of some sort to help manage those limitations, and keeping everything in a proper perspective.

In the final week of my parenting series, this week will be based more on observations from my own experience coupled with resources found online. If you are a parent with a disability, you may see some similarities in your situation. Hopefully, this will provide some validation to your experience.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so it may not speak to your experience directly.

Visible versus Invisible

There are two different types of disabilities out there: the ones you can see and the ones you cannot. For people with invisible disabilities, this can lead to a lot of issues, mainly if a person looks “normal” but uses a handicap parking space. A person does not need to be in a wheelchair, despite the universal logo, to be disabled.

Multiple Sclerosis can be both: for those with PPMS and SPMS (and at times, RRMS), it’s a more visible disability. The person can use a cane, walker, or scooter. It can be abnormal speech patterns, cognitive difficulties, or physical weakness. The outside observer can see the disability.

But many with RRMS don’t display outward symptoms of their diagnosis. Yet, the disability can still be there: fatigue, mental fog, or pain. Flare-ups can cause limb weakness or numbness, which several limits mobility for a short time.

When it is hard to see the disability, it is hard for outsiders to understand the extent of the disability. This can lead to feelings of frustration, inadequacy, and self-doubt by the person with the diagnosis.

Parenting with an invisible disability adds an additional layer of complications: sometimes, it’s hard to make playdate plans because you don’t know how you might feel that day. You may not remember simple details about your child’s life, and therefore seem disengaged with the parenting process from the outside. None of these reasons make you less of a parent, it just alters how you parent.

Ultimately, for those with an invisible disability, they can spend part of their day mentally preparing for outside judgment because people might not know or understand the situation. Outside judgment isn’t a daily occurrence, but when it happens, it stings because you are left feeling inadequate.

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sugar-chronic-illness

Sugar and Chronic Illness

This post was originally published in October 2017. I’ve updated it to include a follow up since the original publication. Find my thoughts on sugar and chronic illness under my update.

2019 Note: This was a check-in post relating to a series of diet changes I made. Because I was breastfeeding Jai, I could not take my MS medication until I finished. I wanted to find a way to manage my illness until I restarted my medication.


Cutting sugar went smoother than I expected, though there were a few days where I was irritable, according to Ash. I refuse to believe him, but deep down, I know he’s right. No longer having that emotional crutch makes for a very grumpy me.

Psychologically speaking, it was a lot easier than I expected. As long as I didn’t have sugary treats in the house (I tossed all of our sweets or sent them with Ash to work); I avoided buying sugary drinks (everyone knows that my weakness is a good Pumpkin Spice Latte in the fall). If I had fruit for any sweet cravings, I was good to go. Every time I drove by a Starbucks, there was a temptation to pull in and just give in to that PSL craving, but I made sure to keep going and have a few bites of pineapple as soon as I got home.

A couple of times, I did eventually stop at Starbucks, and I made sure only to order an Americano. Before I was pregnant, I was in the habit of drinking all my coffee black unless it was a latte. It wasn’t hard for me to get back into drinking with nothing in them. I think it helped a bit too.

Coffee is a wonder drug (and sadly, probably something I need to add to my drop list), and can make a lot of things better.

I didn’t notice any headaches, though, at the beginning of the week, I was more sluggish and in need of an extra nap or two during the day. By the time Ash came home from work, I was very ready to pass Jai off to him, so I could lay down and not think or move for an hour. By day 3 or so, I had a little more energy, and by this morning (day 5), I had even more energy to do my running around without the need for a nap.

I also noticed that during my long run on Thursday, I was able to keep up with my mom and felt less fatigued at the end of it. I also felt motivated to go again this morning (though that would be off schedule). Me? Motivated to run off schedule? This really is unheard of – I hate running.

While shopping, I made sure to review all the labels like I said I would: any time it was High Fructose Corn Syrup or unidentified form of “sugar,” I would move along. From my research, they said that sugar is hidden in everything, and it really is true. Sugar is everywhere. Foods that I usually love to eat, like certain types of crackers or even grab-n-go frozen meals…all contain sugar. I also made sure to avoid agave and honey. If the item were sweetened with fruit juice or dates – I would be willing to grab it to consume.

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