A Return & Refocus

I spent the last month prepping and figuring out how to manage our new life in self-quarantine. Learning to adjust with a new normal? Something I’m used to with a Chronic Illness. I got this.

So far, we stayed safe and healthy. We are minimizing travel away from home as much as possible. I’ve reduced our movements more and more, stretching out the time between grocery store trips. 

I am currently going on Day 8 since the last store trip. I am hoping to make it to at least April 20 before needing to go back out again. We’re even minimizing deliveries from major online retailers.

It hasn’t been easy, and because of needing to make adjustments, it took me a while to settle into a new routine that included blog writing. I am hoping that I will be able to blog more frequently now that I have 1: more time and 2: more time.

Keeping Busy in a Pandemic

Keeping busy and focused at this time helps. I’ve taken advantage of the time to work on a couple of my goals for 2020. Back in December, I wanted to figure out a better daily schedule for myself. I’ve talked about finding workable time-management strategies before, and now was the time to hone it.

I understand that this is a unique situation. The daily schedule I set up for myself may not be feasible once we start getting back to it, but maybe if I do it long enough, I will find a way to adjust when things return to normal.

What I did was this: create a color-coordinated block schedule for myself, detailing all the different tasks I wanted to each day of the week. Have I stuck with it 100%? No. But I do try to stick to it as much as possible and be gentle when I get taken away to do a different task. That is key, and this schedule is a guideline to help keep me focused, not something to stress me out.

I also settled on a weekly to-do list. Pulled from Day Designer (not a sponsored link), I make adjustments to the Weekly Planner design every Monday and use that sheet for the whole week. I put down to-do items for the appropriate day as I think about them and then work off of that list for the day.

I find that this keeps me super productive throughout the week. When I feel productive, I feel better, mentally, and emotionally. I still have my moments where I feel particularly stressed over everything. Still, I do feel like I am making the best of the current situation. 

Going with the Flow

If the global slowdown reinforced anything with me, it’s the need to go with the flow. I was unable to focus on my writing during the last month as I prepped my family, managed my health, and figured out what we needed during this time. I decided that I was okay with this because I had to be. My health and my family comes first, and if it meant temporarily sacrificing something, then I would do it

I could either fight what was going on, or I could keep moving forward.

Fighting would mean more stress and frustration. Plus, what is there to fight? My favorite restaurant cannot do dine-in, so why be mad at them? Holding onto that anger of the injustice of it does me no good and only increases my stress. 

When I accept that I am not able to go where I want to go, run with who I want to run with, and do things as I usually do, I feel a less intense emotional pull. 

Yes, this is a frustrating situation. Yes, having feelings of anger are entirely valid and reasonable. But holding onto those feelings without providing a productive outlet only serves to poison me, not help me. Accepting that I have no control over this situation grants me a modicum of control. 

Best Laid Plans…

As a general blog policy, I like to have a theme for the year and sub-themes for each month. It keeps me focused, but allows me to explore different facets of each topic. I had ideas for balance and harmony in 2020, but when the pandemic hit, all was cast aside. I couldn’t focus on themes, research, and writing while preparing.

Now that I’ve found my stride, I still can’t. Not because I don’t want to, but it doesn’t seem appropriate. How can I write about balance and harmony when the whole world, without hyperbole, is out of balance? It looks rather privileged and lacking self-awareness.

So I’ve had to take a step back, for the time being, scrap my original plans and refocus for the next few months.

A Temporary Refocus

For the next few months, I am going to go without a theme. Instead, I am going to be writing about what I am thinking, feeling, and doing at this time. Both as a parent and as a person with a Chronic Illness. I am going to maintain my general position: self-care, self-compassion, and focusing on health.

I am not going to hide from what is going on, but rather embrace it. Some posts will be directly related to the pandemic, and other posts will be pandemic adjacent. As I said above, it’s essential to go with the flow, which is what I will be doing for the time being.

I hope you all are staying safe and healthy at this time and that you do what’s best for you to maintain your mental and emotional health.

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.


Please consider supporting the MS Mommy Blog by buying a cup of coffee. If you find my content helpful, a little support helps keep the blog going.

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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.
Read More

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.

Read More

Embracing Big Changes in Life

At the end of October, I wrote about the prospect of losing Lytton to a mysterious illness. I had hoped to get more time with him as we thought we had a few options to manage his health. But towards the end of November, we had to do the compassionate thing and end his suffering. I learned a lot about embracing big changes in life during that time.

While I consider myself fortunate to have a few weeks to prepare for it, I am still in shock over the quickness he went from healthy to terminally ill. From the first sign of his illness to when we said goodbye was a month and a half. I prepared, but it’s hard to move that fast for such a substantial change.

Yet, significant life changes happen all the time. Our diagnosis. Buying a house. Losing a loved one. Finding someone new to love. The changes discussed in this post are the ones completely out of our control.

Change happens. Sometimes we can prepare ourselves for it, but often we cannot. What we can do is take the time to embrace the change. Regardless of whether you consider the change positive or negative, it’s going to happen regardless of your wishes. Rather than fight it, we find a way to work through it.

How Can Change Help You?

Change can help us, even if it’s unwelcome. I don’t know when I will reach the point where I can sincerely say losing Lytton helped me. Each day, I go through all the stages of grief as I try to move through my new normal.

Yet, I admit that losing him tested the effectiveness of the wellness journey I’ve made over the past few years. I did not need the confirmation that it works. But, the fact that I still haven’t experienced an exacerbation is proof that I am managing healthily. 

Lytton’s death reminded me of the impermanence of life. I pushed death to the back of my mind as something that happens to other people but hasn’t touched me. With that attitude, I did not appreciate everyone around me in the way I do now. I recognize that anyone can leave me permanently, with no explanation. 

Finally, it reminded me that change happens, and I can get through it. The last time I experienced a “negative” life shift was after my diagnosis, almost seven years ago. I regrouped and was eventually able to move forward. 

Change, whether it’s good or bad, can help you discover essential things:

  1. The importance of taking time for yourself. If you experience a life change, negative or positive, take some time to sit with it. 
  2. Self-care, again. The further I get into life, the more confirmation I get surrounding the importance of self-care. Self-care can be in celebration or to help calm oneself after the change.
  3. How resilient we are and why finding ways to adapt is essential. While we must accept an uncontrollable change, we don’t have to roll over. We can find ways to adapt and adjust to change. 
  4. Appreciate life before, during, and after the change. We can recognize what we had before, find ways to enjoy life as it is, and understand what life might be in the future.
  5. Finding the positive in the negative. It might take some time, but there’s always a silver lining even in the negative changes. You might find comfort knowing what’s going on with you, be at peace because a person no longer suffers, or allowed to try a new career opportunity.

Embracing Big Life Changes

The key, I’ve found, is to lean into the uncontrollable changes for better or for worse. There are some changes we can fight for, opportunities we can pursue even if the door keeps shutting. But often, significant changes are out of our hands. We cannot prevent the new direction our life goes in, so we can accept the outcome and find ways to adapt.

The first step is acceptance and embracing the big changes. Finding ways to adapt follow closely behind.

For me, while I would love to run out and find a Bombay kitten similar to Lytton, I am learning to reconnect with our other two cats as a form of acceptance. Lytton was such a significant presence in our household that often, the other two cats functioned like roommates we cared and fed. I am spending more time with them, whether they appreciate it or not, and loving on them.

After my diagnosis, I fought the information, choosing to be ignorant of my MS because it was too painful to acknowledge. Behaving this way did not improve my quality of life. But once I took steps to accept and adapt my reality, I found greater satisfaction with everything.

If there are negative feelings associated with significant life changes, it’s hard to accept and adapt, especially in what we feel is a timely manner. Remember to honor your timetable, but be open to acceptance as your goal once you’ve finished mourning (death or health change). 

Big changes are going to happen in life. We have two options when encountering change: embrace it or reject it. When we embrace the change, it allows us to heal and move forward. When we reject it, it can prolong our dissatisfaction and cause stress.

In the end, the decision is ours how we deal with change.


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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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