Love & MS

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


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

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis 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 every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

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. In addition to maintaining a relationship, I am trying to learn my limitations. 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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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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Immune & Energy Booster Turmeric Shots

This post was originally published in December 2017.


Several years ago, I participated in an intensive yoga course, which required attending classes at a local studio almost daily and first thing in the morning. This was before my diagnosis, but just after I experienced my first flare-up, so fatigue was an issue for me at the time.

I was complaining to another student while we were waiting to step into the studio about how tired I was. We were doing a strict detox diet, and coffee was not on the approved list. She pulled this small bottle* out of her bag and handed it to me.

Her: “It’s a turmeric shot. These things are great natural energy boosts.”
Me: “Turmeric? As in the spice?”
Her: “Yeah, have you heard about it? It’s got all these great ayurvedic properties, but it’s been found to boost your energy naturally. It’s more potent than caffeine.”
Me: “And it’s safe?”
Her: “Absolutely. It’s all-natural. Just try half of it and let me know what you think after class.”

I tried it, and she was correct. I felt extremely energized. I was almost shaking to get the class started, that’s how powerful it was for me. I will add this note: it was the first of any sort of energy drink I had in weeks. We couldn’t even drink green tea, so the results might have been slightly skewed due to my body just going into overload.

I didn’t get a chance to follow up with the turmeric as an energy booster after that experience. But it stayed in the back of my mind. When I read about the benefits of turmeric in the diet for brain health and as an anti-inflammatory, I decided to look back into it. It might be worth trying to help manage my MS.

The Health Benefits of Turmeric

What makes turmeric the wonder spice is the curcumin. Curcumin is believed to be a beneficial supplement to fight Alzheimer’s due to its anti-inflammatory and brain-boosting properties. It also is found to have cognitive-boosting abilities, though this needs to be researched further. It can also help prevent certain forms of cancer.

These two things alone: inflammation and cognition are issues a person with MS deals with daily. I am not advocating forsaking all other forms of MS therapy. I am adding it to my daily diet to supplement traditional forms of MS therapy. And as a runner, the anti-inflammatory benefits are beneficial to recovery.

But the energy/metabolism and the immune benefits? This becomes a universal appeal for daily consumption of turmeric. Even if you don’t have MS, having a natural way to get more energy and boost the immune system will be beneficial to your health. It may not cure a cold or prevent getting one, but it will give you that extra boost your body might need.

Making My Own Turmeric Drink

Before removing sugar from my diet, I found it harder to stomach turmeric even in a drink form. The taste was too weird, and I needed something sweet to help cover it up. It’s how I handled flavors I didn’t care for in the past: add sugar to make it more palatable.

A few weeks after quitting sugar, I bought several shots of turmeric for an early morning road trip I was making to Tennessee. I took some sips and found that I actually enjoyed the flavor and felt quite the energy boost. Sugar struck again as a ruiner of flavors. Now that it was out of my system, I was able to enjoy something I previously disliked.

But what took my breath away was the price per bottle. I could drink one bottle per day for the health benefits, but my wallet wasn’t going to be fond of the ~$6.00 per 3 fl oz. I knew I could make it even cheaper.

I found a couple of recipes online. However, they didn’t adhere to the vegan diet. They used honey or some other animal-based additive. I decided to create my own recipe. Below the break, you will find my recipe and some ideas for modifications.

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Veganism and Me

This post was originally published in November 2017. I’ve updated it to include a follow up since the original publication.


2019 Note: This was a check-in post towards the end of 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.

One week of the vegan diet down and going strong. It’s difficult to tell if there’s a difference in my energy level while I am still fighting this chest cold. Still, I do feel like my mood is relatively calm and mellow.

I am anticipating that once I start feeling better that I will notice a spike in my energy levels. After my first flare-up, but before my diagnosis, I went vegan for a few months. I found it as a natural energy booster while I wasn’t consuming caffeine. I expect the same results because I am eating similar to before, if not better, because I am not eating sugar or junk foods.

I am finding that I am craving meats and STILL craving fried foods. While I am not craving beef or pork, I am craving chicken and salmon, mainly fried chicken and fries. I still haven’t indulged in my fried food cravings, but I am astonished at how much harder it’s been to drop those foods. I expected sugar to be the hardest for me to remove from my diet with the cravings, and it hasn’t been.

I occasionally feel sorry that I can’t indulge in sweet treats, especially in the fall, but what I wouldn’t give to have some salty fries right now. Or onion rings. Or mozzarella. Or some sort of fried chicken skin…

I found some puffed veggie “fries” that work as a snack, and I’ve been making homemade microwave popcorn for idle snacking at night. I am going to try baking some fries or a vegan version of twice-baked potatoes. I think either of those might help satisfy my cravings.

Next week is the penultimate food removal and going to be the most difficult with functioning in the real world: gluten.

Overall Health Update

Getting on the scale this morning, I have officially lost 12 pounds from when I first started this journey. It was never about weight loss, but to see that this morning was a huge confidence booster. Hopefully more of it will melt off as I eat healthier and healthier and keep running. Once I finally hit a bottom with the weight loss, I will reveal official numbers.

2019 Health Update

It’s interesting how things come full circle. I maintained the vegan diet through the end of 2017 and into part of 2018 but found it unsustainable when I dropped gluten as well. I re-introduced eating dairy, meats, and gluten and never noticed that energy boost. Still, I suspect it had more to do with not maintaining as balanced of a diet as I intended.

In April of this year, I went vegetarian again and transitioned back to veganism in June. My reasons for transitioning back to veganism had less to do with health, though that was part of it. It had more to do with ethical reasons and being mindful of my overall environmental impact. This time I was more conscious of my diet, especially with all the running I’ve been doing. Since transitioning to vegan in June (but still eating gluten), I’ve had more energy and feel better overall.

I indulge in junk food, especially after several days of intense running training. I just ran an intense half marathon, so one of the first meals I had was a plate full of fries. I maintained the attitude I was going for back in 2017, and that is to embrace moderation.

I still firmly believe making dietary changes have helped me manage my MS while off medication. I won’t say it was any one thing, but rather, being mindful of my eating and ensuring it was balanced. If you could call my eating habits anything, it’s mostly clean eating with the occasional fried/unhealthy indulgence.

As to the weight mentioned at the end of the post, here is the official number reveal I promised. I was 164lbs when I started my journey in September 2017. When I wrote this post in November 2017, I was approximately 152lbs. According to the BMI standards, I was still considered overweight. At my most recent weigh-in, I am down to 130 lbs. This puts me solidly in healthy weight territory.

Two different races, two years apart.

I suspect losing nearly 60 lbs (I was 186 at my highest when pregnant with Jai) helps manage my MS. I don’t know if this is true, but I do feel better overall because of it. I understand this isn’t something everyone can do, especially with a debilitating autoimmune disease, but if you have the means to lose weight, it is worth trying. 

I wanted to revisit this post since I wrote it exactly two years ago, and it was interesting to see what changed and what stayed the same. It’s not often I think of taking the opportunity to see my personal growth.


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Featured photo credit: Canva


Red Hats for Little Hearts

This post was originally published in December 2017


The holidays can be a stressful time for anyone and for those of us who craft, we tend to use that crafting skill as a cathartic outlet. For me, I have a lot of energy and so I crochet as a means to keep my hands busy and out of trouble.

It works most of the time.

I really enjoy making something for another person. I’ve made a Griffin, Phoenix, the Lorax, and Scrump (from Lilo & Stitch) dolls for various friends and family members. The look of joy that comes on the receiver’s face always thrills me considering the time, thought, and effort put into the project.

Because this week’s theme is about generosity, I wanted to highlight a personal project my mom and I did with our crafting. The campaign is in February, so I wanted to provide enough time to raise awareness and give readers a chance to create something.

This year my mom mentioned that there is a program that collects handmade hats for newborns to raise awareness for heart health. February is heart health month in the United States, so this campaign is meant to raise heart health awareness for mothers and their newborn children by providing handmade hats for the little ones.

These hats will be distributed to local, participating hospitals to all babies born during the month of February.

How to Participate

This page provides all the necessary information, but here’s the quick run-down.

  • Find your state and select a group participating in the cause
  • You may need to contact the coordinator to get more information on how they want to receive the hats and their personal deadline
  • Make as many hats as you want and send them out before the deadline
  • If you are not a crafter or don’t have the time, consider donating to the American Heart Association

Restrictions

  • Hats will need to be simple, so please do not add any bows, pom-poms, or flowers to them (these pose choking hazards)
  • Currently, this program is only in the United States, but I have a couple of links below for other yarn-craft donation programs outside the States

Knitting Patterns

Crochet Patterns


Other Crafts for a Cause

If you make some hats (or participate in another project) be sure to post a picture of it in the comments below. I would love to see how they turn out!


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Photo Credit: Michelle Melton