2019-a-reflection

2019: A Reflection

For the past two years, I’ve written a reflection for the last post of the year. Read 2017 here and 2018 here.


2019 was the year of the crucible. I underwent a lot of “lessons” in life; some brought on via self-reflection and others brought on by the natural flow of life. I learned a lot about myself, my capabilities, and where I see myself going in the future. In the three years, I’ve done these posts, it was the most challenging year emotionally, but the easiest year relating to my MS.

The Down Points

  • From October to December, I encountered some of the most challenging months in my adult life. These months rivaled my diagnosis with all the emotional upheaval. I lost Lytton in November, one of my forms of emotional support, while dealing with other challenges at the time. It felt piled on.
  • I continued to do a lot of heavy self-reflection, particularly with my role in my relationships and anger. The self-reflection often left me drained, but I am getting better at managing both. 
  • While I am getting better with my time management, I still struggle to get ahead on my work and stay ahead. With the past few months of upheaval, I’ve fallen drastically behind on several projects. I am struggling to get back into the swing of things. Additionally, I am grappling with being kind to myself because of this lag. I am seeing missed time as time wasted.
  • I am fighting against a victim mentality that crops up when experiencing a downcycle. My cat passed, I am falling behind, I am struggling to achieve goals, etc. – all played into previous internal tapes of “woe was me.” I have moments where I curl up in bed with a book or my phone to escape, but I try to set myself a timer to break out of it and be productive again, even if it’s with one task.
  • This last one needs to be at the end because it straddles a down point and positive point: getting back on my medicationThe down aspects of getting back on Tecfidera: it definitively means Ash and I are stopping with Jai for children, it’s a physical acknowledgment of my MS, and the pain I am about to undergo with the first month of side effects. 

The Positive Points

  • I decided to re-start my medication because I knew it was the right thing to do for my health. By re-starting Tecfidera, I am creating a more significant buffer between my well-being and my MS. It is an insurance policy to help me manage my MS when I have another downcycle of stress/emotional change. It’s also a physical acknowledgment, to myself, that my health is worth it.
  • I rediscovered my love of reading this year. It’s been over ten years since I sat down and read a book for pleasure. While in graduate school, I was afraid of wasting time on pleasure books when I could be doing research. I also found that graduate school temporarily blocked my love of reading because of all the heavy lifting I did. But I vowed to read more for the blog, so I started with audiobooks and graduated back into the physical medium. As I started getting into depths of the emotional upheaval that was this fall, I read more to escape. I found reading to be a soothing distraction, educational at times, and it also sets an excellent example for Jai. I plan to continue to read more in the coming year.
  • While my time-management was less than ideal, I learned that the more organized I am, the more satisfied I feel. I also found that I am less stressed if I have a flexible plan in place. I am less likely to put things off, though I still have my moments of procrastination. If anything, I learned that I am one of those people who benefit from structure, minimalism, and organization.
  • Last year I contemplated the role toxic friendships played in my life while feeling frustrated that a lot of my relationships had harmful elements. I recognized I stacked my friendship cards against me by rejecting or minimally pursuing positive relationships in my life. This year, I opened myself up to new relationships while maintaining my sense of self, something I hadn’t done before. Because of it, current friendships grew more profound, and I made a bunch of new friends along the way. 
  • My running took off this year. I ran in three different states (Florida, Nevada, and Wisconsin), and even PR’d on a half marathon, almost making it below two hours. I officially decided that I would begin the process of qualifying for the Boston Marathon. While I have a long way to go (like running a marathon in the first place), it’s a goal I’ve created for myself to see what I can achieve. I think my running has helped me manage my MS and my emotional well-being, along with getting me in a healthier space.
  • While it hasn’t been my most traveled year, I did get around the country quite a bit for 2019. I traveled to Florida for a Walt Disney World running weekend in January; I went to Las Vegas for my best friend’s birthday in March; and to Wisconsin twice (July & November) to visit with my in-laws. It was a year filled with a lot of new experiences, which I enjoyed very much.
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Self-Generosity

This post was originally published in December 2017. I have updated this post.


At this time of year, life can get overwhelming. There are social, familial, and professional obligations that all demand our full attention. While these demands don’t go away, they do seem more urgent at the end of the calendar year.

It is easy to get caught up in these demands and struggle to prioritize them (and sometimes they don’t allow for reasonable prioritization). It leaves a person feeling frazzled, burnt out, and hating the holiday season.

That isn’t the case for everyone, but I am sure we’ve all had moments in life where we would like to skip straight to January 2nd and move on with our lives.

We’ve run into others who feel this way: try going into a mall around this time of year. I’ll just leave it at that.

Piling on top of the usual life demands are calls for generosity from various organizations at the end of the year. Commercials are filled with pathos-based appeals to get the viewer to donate to multiple causes. Religious leaders ask their people to open up their wallets and give money, toys, or time to those who are less fortunate. Stories of tragic events lead to calls for donations of food, items, and blood. Passive social pressures increase with social media pages flooded with posts from others announcing their generosity.

It gets incredibly overwhelming.

The issue is that when we think about the term “generosity,” we think about it as giving to others. But look at the definition of the word:

Generosity
nounplural generosities.

1. readiness or liberality in giving.
2. freedom from meanness or smallness of mind or character.

3. a generous act:
   We thanked him for his many generosities.

4. largeness or fullness; amplitude.

Dictionary.com

Nowhere in the definition does it specifically define generosity as an act we give to others. It is an act of giving and love, but with no designated recipient.

When we get caught up in the minutiae, we completely forget about the importance of taking care of ourselves. Societal pressures states we should be generous with our time and care for others. Still, it’s tough to care about another person if we don’t take care of ourselves.

If we care for our own needs first, we can be more useful for others. And when everything becomes too overwhelming, we might be able to see through it with less stress and frustration.

The Importance of Self-Care

I saw this quote posted on a friend’s Facebook wall, and it was the foundation for this post. I kept the original formatting:

self care isn’t always lush bath bombs and $20 face masks. sometimes, it’s going to bed at 8pm or letting go of a bad friend. it’s forgiving yourself for not meeting your impossible standards & understanding u are worth it. self care isn’t always luxury, but a mean for survival

Cheerful Nihilism

Self-care quotes, personal revelations about self-care, articles expounding self-care all make the rounds on a reasonably frequent basis. Some of them connect with us and others we either ignore or go, “yeah, if only it were that easy.”

All the wisdom in the world about self-care/self-generosity does not mean anything if it doesn’t connect with you. And let’s be blunt about the quotes/revelations/articles: they aren’t saying anything new. It’s all steeped in common sense.

We just need them to remind us every so often.

I am not an expert that can espouse pearls of wisdom of how to better take care of yourself, but I do recommend that you be more generous to yourself. Allow yourself to be more selfish.

But this isn’t the same when we think about being selfish. It’s is a loving form of selfishness.

Recognize that you need to take care of yourself before you can care for others. The Mayo Clinic recommends that caregivers take care of themselves first before they take care of others. They acknowledge that a person must be selfish if they are going to be an effective long-term caregiver.

Everyone is a caregiver. For some, it’s for another person; for everyone, it’s themselves. We all must care for ourselves.

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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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identifying-wellness-changes

Identifying Wellness Changes

So often I get caught up with what’s going on in my life, at the moment, that I don’t take the time to step back and appreciate my development as a person. It’s easy not to recognize how we’ve grown as a person, partly because we are too close to the situation.

Or, more often is the case for me, I don’t reflect on the changes I’ve made and assume I am staying in one place. I presume that I am not experiencing growth because I don’t think of identifying my maturation. If I am bogged down with routine, I take for granted the moments where I behave differently than in the past. I miss seeing the benefit I am getting from my wellness changes.

It’s essential to appreciate the changes we’ve made, no matter how minuscule they might seem, because any change in a positive direction is a great start.

Identifying Changes

Back in February, I devoted a whole month to self-reflection. If we want to see what changes we’ve made throughout this year, we have to dive back into the self-reflection process. Hopefully, this will be less painful than a full-assessment of ourselves. If we feel like we haven’t done a lot of internal work this year, there might be a hesitation to self-reflect because of shame.

Unfortunately, we’ll have to push through those feelings of shame. At the end of the year, take a few moments to reflect on the positive. When your mind drifts into negative thinking, find something positive you did recently, and see what motivated you to do it. 

How will you know a change you made throughout the year is a positive one?

When making wellness goals, we often say things like: I want to exercise more, eat healthier, feel more satisfied, etc. And we’ve been through this cycle before: after making changes, two things happen. We “Fail,” as in, we give up. Or, we “fail” because we don’t notice changes quick enough, and feel like we are wasting time. 

It’s the lower-case “fail,” that we are examining today. Chances are if you don’t notice any positive changes in your life for the year, you didn’t fail. You just aren’t looking hard enough at what you have done. If you are continuing with your changes, despite not seeing the results that you want on time, consider this: you are sticking with it, and that counts as a success.

The entire point of this blog is tracking my wellness journey with MS as I wait to restart my medication. I wanted to get healthy to help manage my flare-ups and to provide a positive example to Jai. There are plenty of days where I don’t think I’ve made a difference in my life. I don’t see the results, so I assume I am spinning my wheels.

These last two months are proof that I’ve made changes, and the changes are working for me. I wrote about Lytton’s health issues at the end of October, and less than a month later, we had to say goodbye. The week we put him to sleep was stressful, surpassing the week I spent in the hospital utterly clueless about what was wrong with me, pre-diagnosis.

Not counting watching Lytton suffering through the final hours of his ailment, I fell from running the week before, Jai was sick, I had a mild infection, stress of an upcoming trip, and wondering when I would find time to catch up on the blog like I planned. Spoiler: I never caught up by evidence on the tardiness of this post.

When the dust started to settle, about a week or so later, I took a moment and realized something. I did not experience a flare-up. Given the amount of stress I was under, all the various negative moments I experienced, I was relatively calm and no indication of a flare-up.

I was pleased with myself. I weathered a hurricane of adverse events that, at any other point in my life, would have left me feeling defeated. I acknowledged that there are cycles in life where it feels like everything is piling on. I am in that cycle, but it will end, and I have to stay calm until then. I can’t fight life, as fighting will cause more stress. If I remain steadfast, acknowledge the feelings of frustration or sadness as they come up, and keep moving forward, I won’t drown in self-defeat.

Additionally, I experienced relapses for less. Granted, I still have a few days here and there where I want to stay in bed for a few hours over Lytton’s loss, but I know it’s coming more from depression and not from my MS. The fact that I am still managing my MS without medication and not undergoing a relapse shows me that the changes I made are working. 

Hopefully, you aren’t experiencing a down cycle where life is piling on to show you the effectiveness of your life changes. But I hope you take this away from the post: even if you don’t notice the changes working, chances are you are in a better space than you were before you started.


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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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