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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Adaptive Parenting

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


While MS can make parenting difficult, and I have to be okay with my limitations, there are ways to be the parent I want to be. Remembering that I am enough for my son, and he won’t necessarily recognize my limitations helps. I learn to plan workarounds in our daily lives to minimize MS’s impact. As he transitions to a different developmental stage, my adaptations will evolve with him. My ability to be more interactive will increase as he grows older. 

This isn’t advice, but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can, and that’s the most important thing.

Finding Alternatives

I’ve related some of my personal frustrations regarding my MS: fatigue and mental fog. Fatigue prevents me from being able to have the energy I need to chase a toddler, and mental fog means that I can’t recall information quickly. Learning opportunities feel like they slip away because I can’t remember information quickly or accurately.

Below are some ways I actively adapted my parenting due to the MS. I am sure there are other things I do without thinking that are adaptations, but I can’t identify them right now.

Fatigue

This is a rather simple solution for me: take rest breaks when I can. But with a toddler, that’s easier said than done. Additionally, when I take rest breaks, I feel guilty because I am not spending active time with him. Below are some ways I’ve adapted my parenting despite the fatigue.

Playtime

How I’ve worked around it: encourage more independent play for Jai. While he’s going to be 18-months soon, he does a lot of independent play for his age. This means I will sit in the room with him while he plays with his toys, or when we go to the park, I will sit and allow him to explore safely. When I need to intervene, I do. Still, for the most part, I will enable him to entertain himself when I am feeling unusually fatigued.

This is good for him in several different ways. It grants Jai a safe form of independence that will help boost his confidence. Jai can critically think through a problem, like detangling two toys. It also allows him to discover his abilities or limitations. When he is around other children, I found that taking a hands-off approach improves his socialization.  

I gauge his emotional mood, and if I feel he needs more one-on-one interaction with me, I will get down with him and play for as long as I am able. I warn him if I find my energy is flagging. This is to avoid a sudden stop in playing from me. I will then redirect the play into something less high-intensity, like reading a book or playing with a stuffed animal.

I have found that “alerts” have helped minimize any sort of upset feelings: “Mommy has 5 more minutes that she can play like this with you,” or “you can go down the slide 3 more times before Mommy needs a break.”

There is liberal use of timers in our household. I will use the timer as an objective third-party that can arbitrate the length of my play. I do this to be fair to Jai and to begin teaching the concept of time. When the timer goes off, Mommy needs to take a little breather, therefore take that time to play independently again.

Naps or Rest Breaks

Jai would take two naps a day, averaging two hours at a time, and I used these periods to get things done or take a nap myself. He’s hit a developmental stage where, in his opinion, naps are mere suggestions and no longer necessary. It’s a toss-up if he’s going to take his morning or his afternoon nap, so the only way we know is if I put him in his crib.

While he may not need those periods to sleep, I need them to rest so I can keep going throughout the rest of the day.

That’s why I continue to keep him on a nap schedule, but they are rest breaks for the both of us. For about an hour, he will be in his crib with quiet music playing, pleasant lighting, some of his favorite toys and books, and allowed to play until I can collect him.

By putting him in a calm and low-sensory stimulation environment, I am giving him a chance to calm down and process all the activity during the day up to that point.

When he gets older, and I am more confident in allowing him to be out of his crib unsupervised, it will transition to quiet time, which is similar to his independent play. He will already be used to that quiet time, it will only be a location and activity change.

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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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The Internal Voice of Self-Doubt

In May, I discussed growing up with a negative internal voice and the long-term damage it caused in my adulthood. This voice shaped my inner monologue that I still listen to today, which impacted my ability to have meaningful relationships with others. Additionally, this voice is the source of my internal self-doubt.

I hear this voice the loudest when I am working on essential tasks that require self-motivation. If I am training for a run, it’s that voice that tells me I can’t make it up a hill without stopping. I try to combat it by setting mini-goals, “if I make it to that lamp post, I can walk.” If I focus too much on that mini-goal in the distance, the voice will sometimes win out by stating again (and again) that it’s too far away. I’ll stop to walk because I cannot cut through the discouragement.

I give into that voice more often than I would like.

You may not struggle with self-doubt as much as I do, which I hope remains the case for you throughout your life. But if you do, even for a little bit, I hope you’ll find some comfort and reassurance in these posts.

The Internal Voice of Doubt

For many, self-doubt comes from a childhood where the child grew up to believe they weren’t good enough. Children of narcissistic parents or parents with narcissistic tendencies often struggle with self-doubt and feelings of inadequacy. These parents made the child feel like they were never good enough, and when this happens, the child struggles to regulate their feelings of self-doubt.

My self-doubt voice grew the loudest in graduate school and immediately after my MS diagnosis. I ended up coupling chronic illness with my self-doubt to give myself more excuses as to why I couldn’t do something.

I can’t do this because of my fatigue. I can’t do that because of my MS memory issues. Why did I think I was capable of starting this project? I am never going to be good enough to get a job in this field, so why am I trying?

I gave into this voice so much that it stalled all progress in the program and nearly prevented me from going out and achieving my professional goals. While MS may not have created my self-doubt, it helped exacerbate it.

Getting Stuck

Reading Gary John Bishop’s book, Unf*ck Yourself, was an eye-opener for me. Bishop’s point about staying in our comfort zones resonated with my moments of self-doubt: when we stay in our ruts, we don’t challenge ourselves. When we don’t challenge ourselves, we are listening to an internal voice that says we can’t (or won’t) succeed.

Our self-doubt hates change. It hates to be challenged. When we hear that voice yelling that we can’t make it up a hill during a run, it’s saying that our task is too hard even if it’s for our own good.

Self-doubt saves us from unfamiliarity.

Those in high-powered careers or in graduate schools may have heard the term “imposter syndrome.” You start to doubt your abilities or knowledge so much that you find it extremely difficult to move forward.

Or, if you don’t deal with imposter syndrome, then perhaps you struggle to take positive feedback from others. Each time you receive a compliment, you deflect it or denigrate yourself because you don’t believe what is being said about you.

Whether it’s imposter syndrome or unable to take a compliment, both stem from being too afraid to see ourselves as worthy of anything. Self-doubt keeps us stuck and wanting to move forward because we believe we aren’t worth it.

Listening to the Wrong Voice

You know the phrase “squeaky wheel gets the oil,” right?

Unfortunately, our internal voice of self-doubt tends to be extremely loud, therefore sucks up most of our attention. Sometimes, it’s hard to ignore or brush that voice aside. If you are dealing with self-doubt that carries over from childhood like me, then it can be pretty painful to listen to and indulge that voice.

Yet, that voice is probably keeping you from making the changes you want to make in your life. Your chronic illness exacerbates this voice. Unfortunately, the solution is finding a way to either ignore or work around that voice so it becomes a muffle. The unfortunate part is that this won’t be an easy task to do.

Like running up that hill during my training, we’re about to embark on a challenge that will have you wanting to stop before reaching your goal. Over the next few weeks we’ll discuss some tools and examples of calming that voice of self-doubt.

Know that you are not alone in this journey. You are worth taking these steps, despite what that voice might tell you.


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Featured photo credit: Tim Mossholder on Unsplash


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Setting a Positive Example

I haven’t had a parenting post in a while, so it’s time for one. If you are like me, and a parent with a chronic illness, thoughts of “how can I be a better parent” come up in moments of self-reflection. A constant concern I have is, am I setting a positive example for Jai? Am I being a good mother, especially in the moments my illness seems to take over?

I feel like there’s a lot of expectations placed on mothers, especially on how we project ourselves in public and private. When we have moments where we are vulnerable, we get frustrated. Coupled with a chronic illness, especially invisible ones where society forgets we are ill, it’s easy to feel overwhelmed.

For myself, in the moments I feel overwhelmed, I feel like I struggle to set a positive example. With my MS, I feel obligated to set an example about the importance of handling things out of our control in a positive way.

When we have a Little Clone

It isn’t always the case, but have you noticed being closely aligned with a parent in personality? More like your mother or your father? Or a nice blend of both? If you are a parent, you may notice your child favors you or your partner more in personality.

This may be frustrating because two strong personalities in the same home is a recipe for conflict. But it can be a wonderful bonding experience if approached properly. The parent whom the child favors is able to identify personality quirks and be sensitive to particular needs. Rather than being an adversary, the parent can be a valuable alley within the home.

When a child is similar to us, it’s a wonderful opportunity to see our own behaviors in their purest form. Children can provide a deeper insight to ourselves.

I find that Jai teaches me how to behave better. Observing his interactions on the playground, he does not get upset when another child steals his toy. Rather than getting upset, he’ll move on to another toy. It’s an opportunity for me to learn from his wisdom: focus not on the loss of the toy, but the opportunity to do something else.

I recognize his behavior is age/developmentally based. In a few months, he may not behave so passively in a similar situation.

In those moments of adaptability, I encourage his behavior. Likewise, I want to make sure he doesn’t pick up my bad habits. Rather than swooping in and letting Jai know that something negative happened, I try to be as non-reactive to keep the situation calm and under control. My instinct is a bad habit developed over the years: take the toy back while reprimanding the offending child for not knowing how to share. This teaches Jai to be aggressive in a negative way and I don’t want to encourage that.

If Jai is upset over losing something, it is better I show him how to ask for a toy back in a nice manner, rather than fight bullying with bullying.

Setting a Positive Example to Children

Children, even in their worst moments, provide us with valuable insight to our own behaviors. They observe our every moment, behavior, and style of speech. A few weeks ago, when I braked the car suddenly, I heard from the backseat, “what are you doing?” directed at the driver causing me to brake.

I knew in that moment I needed to be more aware of the language I used while driving around the city.

Consider this: next time your child behaves in a manner you find problematic, step back and see where that behavior was modeled for them. Was it from you? A co-parent? A secondary caregiver? School? If you find that it is a reflection or response to your own behaviors, consider finding a way to change it so you model the behavior you want your child to have.

This might be particularly difficult to achieve with a chronic illness, but it is still possible. Use your illness as a teaching moment: sometimes we cannot control our own behaviors because of an exacerbation, but we are doing the best we can with what we have.

When you mess up, rather than ignoring it, sit down with a child and explain what happened. Do not excuse it. Provide a reason to your thinking and behavior, or admit you don’t know why. Walk a child through how you plan to approach the situation in the future and acknowledge that you may not remember/achieve it the next time. Admit to your imperfection, and reassure the child that it’s okay to be human but not okay to hurt others. Finally, make sure you apologize to your child if necessary.

Treat your child, no matter their age, like the human they are with all the respect that goes with it. You’ll find that the example you set, no matter when you start, will eventually payoff with some patience and compassion on your part.


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Featured photo credit: Michelle Melton