March is Multiple Sclerosis Awareness Month

In honor of MS Awareness month and week (March 11-17), MS//Mommy will feature a series on the following topics: raising MS awareness, getting involved, advocating for your health, dealing with an MS diagnosis, parenting with MS, and educational tools for family and strangers.

MS//Mommy blog has a new look for the month, so please stop by to check it out.

 

Raising Awareness on Social Media

I’ve made a series of banners and images that you are free to use to help raise MS awareness. These are free to download for personal use only. For professional use, please contact me.

Please do not remove the msmommy.blog credit on the photo and make sure to credit MS//Mommy in your post. Credit information for each medium found below.

Facebook

Download a Facebook cover photo for the month:

Cover Photo

Be sure to tag the MS//Mommy Facebook page when you use this photo. Don’t forget to check out the page and give it a like to follow for MS stories and relevant articles to blog posts.

If you are a Facebook user, I created this profile frame. Follow the link below to use the frame:

Twitter

Twitter banner:

Twitter Banner

Tweet credit @msmommy16 and use the #msmommyblog

Instagram

Instagram image:

Instagram Photo

Tag and include @msmommyblog in your post description and use the #msmommyblog

Share Your MS Story this Month

If you have an MS story or advice that you would like featured on the MS//Mommy Facebook page, please email me for more information.


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Checking In: MS Symptoms

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, but 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 cold like this they may feel wiped out but are able to 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 key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key 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, but 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.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but 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, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, 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 means that I have more energy throughout the day and days I do yoga there might be a greater 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 appreciable changes to my MS symptoms.

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Love & MS

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

Either scenario forces the following self-reflection: does my partner stay with me? and, do I disclose my situation on a date?

MS is difficult because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosis: is 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 everytime you want to have a conversation with someone so you forget what you were saying and is up at all hours of the night making it hard for anyone to sleep.

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. As a person with the diagnosis, I am trying to learn what I am capable of doing and what my limitations are. 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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You Are Enough

This is the final week in a 3-week series on parenting observations. Week one is based on gentle parenting, week 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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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 judgement.


In this final post of my “parenting observation series” I want to leave this as the major takeaway: we, as parents, are enough for our children. If we provide food, shelter, clothing, comfort, and education, no matter how imperfect it may be, we are enough for our children.

There is a lot of outside pressure on parents to be perfect and have it all: have the perfect house, job, relationships, food, clothing, education – the list goes on and on.  No parent can ever win the external societal judgement game. The standards for good parenting as dictated by outsiders is so high that it can drive us bonkers.

For those of us with the added obstacle of a disability, seeing what parenting without a disability looks like can be even more discouraging. But our children rarely see the disability in the same way we do.

We must practice self-compassion and ignore everything the outside world has to tell us about our parenting abilities. The only people who need to be in our minds is our children and how they view us.

And surprise: our children will love us no matter what and overlook any perceived imperfections we think we might have. They are, at this point, incapable of seeing our imperfections.

Remember how you viewed your parents in early childhood: one parent was stronger than Superman and the other was the only perfect source of comfort. Sometimes both aspects manifested in one person.

Our children view us no differently. They don’t see the same flaws or recognize what we cannot do. What they see is what we are capable of doing and how that relates to them.

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

 

Being the Perfect Parent is Overrated

One of the biggest issues I have as a parent is worrying that I won’t be perfect enough for my son. I push myself to the point of overload trying to be perfect on a daily basis, so it would follow that I would want to be the perfect parent to Jai.

This is not possible.

In fact, it is strongly discouraged to be a perfect parent for a child. Making sure that everything is done for them, they get all that they desire, the house is immaculate, and they get perfect grades every single time (so you help them out) – all lead to a dysfunctional relationship and stunt a child’s abilities to manage the real world in a healthy way.

If children do not learn about the world, how to manage adversity, and how to critically think through various problems if the perfect parent is doing everything for them, they will struggle as adults on their own. Learning about disappointment and how to manage it is a valuable lifeskill that gets lost if a parent avoids exposing a child to conflict as part of their perfect parenting routine.

Attempting to be the perfect parent can also create bouts of depression in the parent striving too high. This is not surprising because the attempt to be perfect outside of parenting raises a person’s chances of being depressed (I currently suffer from perfectionist paralysis in my own life).

By attempting to be perfect for Jai, I am setting myself up to be less able to help him if I am too depressed by my need for perfection. It’s a vicious cycle.

We want to fail as parents from time-to-time. It humanizes us to our children and helps strengthen any relationship that develops once they are adults. Providing a healthy example of failing in an adult and focusing on what they can learn from us and from their own failings will help promote long-term success in their own lives.

It requires a level of self-reflection that may be hard to swallow, but in the end it helps us grow as adults too.

Saying “I am Enough”

All of this isn’t to say that we should go out and purposely fail, but to acknowledge in a gentle way that it will happen and that’s okay.

Focus not on any failings you might have such as “I could have done this differently today,” or “I could have handled that situation better,” but on what they teach you and all the positives you did throughout the day. Our brains are wired to focus only on the negative, so it is important to rewire them to allow the positive in more often.

If something happens that makes you feel like a failure, try these steps to work through it:

  1. Apologize to your child if necessary even if they are too young to understand. It’s a good habit to get into and makes it completely normal for them when they are aware of it.
    • “I am sorry I yelled at you when you took off your diaper and got poop all over the floor. I was upset over the smell and the mess I would need to clean up. I understand that you are not aware of how much I dislike poop, so I am not upset with you, just upset over the situation.”
  2. Figure out what you could have done differently and create a plan of action should the incident happen again. Spoiler: it probably will.
  3. Take a few minutes to breath and comfort yourself. If you are tense or stressed out, make a cup of tea and allow yourself a few sips before continuing about your day.
  4. Forgive yourself for that failure. Remind yourself that you are not perfect and that is okay.
  5. Find a couple of things that went right during your time with your child. Focus on them any time you start to think about something negative.
    • “We sat and read three books, one of them being my favorite. I could tell my little one really enjoyed my favorite as well.” or “We ran around the chair for 5 minutes laughing at each other over how silly we were being”
  6. Repeat to yourself: “I am a good parent/caretaker, I do the best I can, I am enough for my child.”

All of this will take some time because we have to undo years of bad habits, but starting off slow will help build confidence and self-compassion  in our abilities as parents. These examples will benefit our children in the long run. It’s really about focusing on what we are able to do – not what we can’t do.

And remember: you will always be enough.


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Managing Parental Time

This is the final week in a 3-week series on parenting observations. Week one is based on gentle parenting, week 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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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.


With my MS, my disability manifestation breaks down into two parts: brain fog and fatigue.

Brain fog makes it difficult to remember to do things, important details, and conversations. Fatigue makes it hard to get through the day, especially after chasing a toddler.

One of my biggest fears during pregnancy was that I would leave the stove on or forget Jai somewhere. That’s how forgetful I can be, “pregnancy brain” aside. Likewise, my MS makes it difficult to make new memories so I can lose the precious moments that many parents treasure while watching their children grow up.

I have had to reorganize my life to manage my MS and improve my ability to parent. I’ve recognized what I excel at and what my limitations are and changed my routine to better balance the MS and child-rearing.

What works for me may not work for someone else because each case of disability is different, but hopefully, it will provide some insight as to how I handle everything. It may not be super efficient, but I am flexible to keep adjusting as needs change.

The main thing that helps me make it through the day with brain fog is managing my time. It’s not a strict adherence to a schedule, but an acknowledgment of the natural flow of the day and accounting for periods of high energy or fatigue.

Managing Time and Priorities

When I feel unproductive, I get depressed. Even before my diagnosis, I would get frustrated if I didn’t tick off marks on my checklist. Because I combat daily fatigue, I deal with the reality of not getting everything was done which can lead to momentary depression and personal frustration.

In order to prevent these low periods, I must figure out ways to manage my time better in consideration with my energy levels.

I have the most energy in the morning right when Jai goes down for his morning nap and that lasts until he goes down for his afternoon nap. On days that I go for a run or exercise, my energy level might be extended an additional 2 hours, but I can’t count on that everytime. If the run was particularly challenging or discouraging, I may not have enough energy to make it through lunch.

Tracking my natural rhythms, a typical day might look like this:

  • 5-6am: Jai wakes up and we snuggle or slightly doze depending on everyone’s tiredness.
  • 6-7am: Ash takes Jai for playtime before Ash needs to get ready for work. This gives me an additional hour of sleep.
  • 7-9am: Go for a run some mornings, otherwise make Jai’s breakfast and let him play until naptime. I typically have more energy during this period of time so I am able to do minor chores while Jai is awake.
  • 9-11am: Jai’s morning nap. If I am particularly exhausted I will use this time to nap as well. Otherwise, I will write, clean, or organize the house.
  • 11am-2pm: Jai wakes up and we play, I make lunch, and if any errands need to be run, now is the time we do it. By the time 2pm rolls around, if I didn’t rest in the morning I am feeling very fatigued.
  • 2-4pm: Jai’s afternoon nap. I make sure to take at least 30 minutes rest, but some days I will nap for the entire duration of his nap. If he ends up napping in the car because errands or playdates run late – I do not get a period of rest in and I am usually exhausted by 4pm.
  • 4-6pm: More playtime, I make dinner, and when Ash comes home – we switch so he primarily takes care of Jai.
  • 6-7pm: Ash and Jai spend time alone, playing together. I use this time to rest or work on any minor tasks.
  • 7-8pm: Put Jai to bed.
  • 8-10pm: Ash and I spend time together relaxing before heading to bed ourselves.

As you can see, I’ve worked periods of rest when I can, but I am flexible for the days where I have more or less energy.

I will unashamedly admit to this: on my bad days when I have absolutely no energy, I will make sure all of Jai’s needs are met (diaper, food, water, etc) and put him in the crib with some toys and lie down in another room with the monitor on. If he needs me or gets frustrated with being left alone, I will go immediately to him. But I take this time to recharge even a little so I can make it until Ash comes home.

The key to making it through the day is figuring out how to manage my time. I know when I have the most energy – I know when I need to rest. That helps me figure out when I will be the most productive and I attack important tasks during that time.

But as this article points out, time management only gets you so far.  So it’s a bit misleading to say it’s all about time management: it’s really about priority management. Time management comes naturally once priorities are established.

This is how I go about managing my priorities:

  • Each morning I figure out what is the most important thing I must do and add it to my to-do list with a priority assigned to it. “1” is most important, while “3” is least important. I add all other tasks for the day and assign priority.
  • Once I have established the importance of priority, I figure out when during my day I am able to achieve that task. Some things must be done in the morning when I have the most amount of energy, while other things wait until later in the day because my energy level is less important to the completion of the task.
  • I do not underestimate the power of checking things off in order to feel productive. There may be days where I write every single detail of a task down on the to-do list because the only thing that keeps me moving forward is the tick-marks indicating “done.”I think one of my favorite apps said it best with this tweet:

If time management isn’t working for you, don’t scrap it completely, but adjust your focus to priority management. Once you’ve figured out your priorities, you can manage the time needed to get those priorities done.

And don’t be afraid of rolling those tasks over day-to-day. They will get done eventually.

The Importance of a Calendar

Maintaining a schedule helps keep things straight when it comes to my brain fog. I have tried physical calendars/planners in the past, and while I love the romantic notion (and flexibility) of them, I find that I am less likely to maintain or look at them.

I always have my phone on me and with Google calendar, I am able to share my schedule with Ash. I also love how my Google Calendar integrates with my email, so if I am making plans via email I can click a couple of links in order to automatically add something to my calendar.

Because it’s always by my side I am more likely to look at the calendar, add reminders, and add in events. It is the most effective way to keep my time organized and prevent me from forgetting important things.

I have learned to tell people “hold on, let me put this in my calendar otherwise I’ll forget it.”  I still forget to add to my calendar sometimes and therefore double-book myself or forget about something, but chances are decreased if I am comfortable stopping everything in order to update my calendar.

By removing the need to keep track of things in my head and placing them externally, I am taking control over my brain fog. While it won’t ever go away completely, I am doing something that is recommended to people without a disability and therefore normalizing my actions (and not allowing the disease have control). This helps bolster my productivity and decrease my frustration.

Keeping Lists

While I love to have a digital calendar, I find that having a physical to-do list for my on-the-fly tasks helps more. I do use a digital to-do list for my repeatable daily activities, but as I am going along, I am more likely to write it down on some paper than enter it on my phone.

But list writing can be boring and cumbersome so as to make it interesting for myself, I use Knock Knock pads around the house for my various lists. Below are some of my personal favorites:

*I receive compensation for these links.

Like with a calendar, I am no longer allowing my brain fog to take control of my life by creating lists, but I am also making my abstract ideas more concrete. They feel more achievable when I look at them on paper.

The trick is to not lose the paper and remember to recycle them.

Remaining Flexible

I always remember that I need to be flexible throughout my day, no matter how well planned I have it.  Some days will be ideal and I will be able to get a lot done and other days I’ll need to accept that I won’t get everything done. Remember that that is okay is key to not getting depressed by low-productivity.

I make sure to build flexibility into my daily schedule.

I acknowledge my fatigue and brain fog by knowing that I might get overtired or I might forget to do something. I work in an extra 20 minutes for a project or an extra 30 to get Jai ready for a playdate because, well, toddler.

What do you do to help keep you focused and manage your disability (or if you don’t have a disability, yourself)? How do you combat the threat of low-productivity? This is something that interests me so I would love to hear your suggestions and tips. Comment with them below.



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Featured photo credit: Michelle Melton Photography