Information Huddle

Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

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The Check-In

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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Parenting

Compassionate Parenting: Mindfulness and the Child

This is the second 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.


Being a parent or caretaker requires a level of compassion that is almost second nature from the beginning. It’s as if when the child is handed over, they also hand over the inherent tools needed to be loving, compassionate, and caring for the little one.

Just kidding. That’s the narrative we’re told when we’re about to become parents.

That isn’t actually the case: it takes time to fall in love with this new human being. While some things do come naturally, being compassionate may take longer to foster and that’s okay. Compassion isn’t given, it’s developed through a lifetime of experiences.

Going several months with sleep deprivation makes it hard to want to understand what’s going on inside the little one’s head, but it’s something to consider, especially when they won’t stop screaming.

In a child’s ugliest moments, it is important to see things from their perspective to better serve their needs. As with Gentle Parenting, this isn’t about being permissive, but finding ways to use available parental tools in the most effective way.

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.

The Difficulties of Growing Up

Understanding babies and toddlers is a rather foreign concept. As adults, we are furthest away from them developmentally as possible. Teenagers can be easier to understand, if only because we may have recently come out of that developmental stage.
Toddlers have a difficult life.
As silly as that sounds, it is true when looking at things from their perspective. Several years ago, before I even thought of having Jai, I read a post about how hard toddler’s have it. I haven’t been able to find the exact article, but there are others out there with the same concept. It talks about life from a toddler’s perspective and speculates what they might be thinking.
Life From a Toddler’s Perspective:
  • You can understand most, if not all, of the words spoken to you, but you have limited ability to respond in a way that your caretakers understand. Certain noises or actions will elicit responses, and while they may not be an effective way to get your needs met, it gets the ball rolling.
  • You rarely have a say in anything. You could be playing with a toy, watching your favorite show, eating your snack, and your caretaker picks you up and asserts their will on you in some manner. Moves you to another room. Straps you into a chair. Changes your diaper. You did not want or ask for any of this.
  • Once more: you don’t have a say. There’s food put in front of you and you don’t like the taste or are bored with it. But your caretaker won’t let you out of your chair until you consume an arbitrary amount. You are put in your crib for a nap, but you don’t feel tired and don’t want to be left alone.
  • Rules are abstract concepts. You want to explore and try everything now that you are mobile, but every time you get close to something interesting you get yelled at or moved. You eventually get that something is “no,” but that’s a “no” in the moment and may not be a “no” in a while. So you want to test to see if there’s consistency.
  • There is no concept of self-preservation. You can walk and you see your caretakers go down stairs, why can’t you on your own? Now they get upset when you venture too close.
  • There is no concept of ownership. Everything your caretaker has is yours and everything of yours is yours and everything the other little human you’ve been brought to see is yours, and now there’s crying and you don’t understand why your caretaker is being stern with you for taking that toy.
  • Emotions are new and shift everyday. You don’t understand what they mean or why you feel this way. The only way to feel better is to have an outward release of those emotions by yelling, crying, or throwing something because why not? This causes your caretaker to react in ways you don’t understand.
  • In the same vein, learning happens all the time, but you don’t understand your limitations. You see your caretaker do something or an older child do something that you want to do, but you aren’t able to do it in the same way when you try which is very frustrating.
The list can go on and on, but the point is made: it’s difficult to be a toddler when it’s hard to understand what is going on and you don’t have the tools to manage it.
Keeping these ideas in mind when dealing with a little one will help raise personal awareness and compassion for your child. Essentially every part of being a toddler is frustration, from not being able to understand to not being able to manage emotions. When they are throwing a tantrum or being resistant, it’s nothing personal to the caretaker, it’s because they are incapable of managing their feelings the way adults have been trained to do.
Therefore when confronted with a toddler’s frustration, the adult can take a step back and be compassionate to what might be upsetting their little one.

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Personal Motivation

Make a “Day of Service” a Year-Round Event

In the United States, today is a day of service meant to honor the life and message of Dr. Martin Luther King Jr. Many people have the day off, so it’s easy to coordinate events for people to volunteer and do good within their community. There are plenty of opportunities to go out and do something specifically for the day. These tend to be small time commitments meant to make the most of the volunteers’ work.

Yet, it is only one day out of the year set aside for helping others. Consider expanding commitments to be a year-round thing if capable, double/triple/quadruple the good throughout the year. It doesn’t need to be every week or every month; if committing once every other month is possible, it still goes a long way to help others.

Making the commitment to do something more has its place, specifically for your health. I’ve already mentioned that there’s a lot of positive health benefits for a person who is generous with their time for others. And being generous to themselves. It also sets a great example for your children to do more within their community when they get older.

Below are some ideas for honoring Dr. King’s legacy throughout the year.

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Lifestyle & Blogging

Simple Tips to for Resolution Success

I have a hard time maintaining and succeeding in my New Year’s resolutions. I know that I am not alone, with many people either not making any resolutions or not making it past the three month mark. I find that by the second week of the year, for me, I start to flag in my motivation to keep my resolutions. By February I am like: resolution, who?

I have a few ideas as to why that is the case. I don’t plan. I am not organized. And I don’t take any productive steps to make the changes in order to be successful.

Usually December 31st rolls around and I am like: “Oh yeah, I need to make some resolutions to start tomorrow.” Then I hold them in my mind, but make no attempt to write them down or plan out my path to success.

This year is a little different. I have already listed my resolutions and I really want to see myself succeed. But I have to organize myself first. I may be a couple weeks late, but better late than never?

So now that we have the first week under our belts, I pulled together some hints to help succeed in maintaining those resolutions through the power of organization.

The Science of Success: Personal Organization

Organization, for the most part, is the key to personal success.  When I think of organization, I think of action plans, to do lists, calendars, and apps that flash reminders on your phone. To be fair, that tends to be the gist of organization. But what does it mean to be organized?

Organization is about seeing both the big picture/end goal and breaking it down into its smaller, more manageable parts. 

College advisors have web pages that are filled with tips and tricks on how to organize yourself for academic success. Transferring these tips into a real world application, these are great ideas for personal organization and managing your resolutions.

Maintaining Resolution Success

The first step is to ask yourself: what is the most important goal I have for myself this year? Look at the resolution as the journey to the end-goal, not the end-goal itself. As  fellow blogger, My MS and Me, put it best: consider your resolution “aims”, not as a resolution. An aim seems more achievable, whereas a resolution has the stigma of failure attached to it.

Keep in mind: you don’t need to wait until January 1st to make changes. If the date is important to you, consider starting at the beginning of the month, or the beginning of the week. Otherwise, don’t wait a whole year. Start now.

Below are some steps for organizing your resolution/aims if you haven’t already done so:

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