a-typical-day-with-MS

A Typical Day with MS

MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.

A Typical Day with MS

If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.

My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.

After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.

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Overcoming Roadblocks with a Chronic Illness

If you are taking this journey to wellness with a chronic illness, an understandable first concern will be: what about the normal roadblocks I encounter with my illness? What if I have a flare-up and cannot do anything for weeks time so it sets me back?

These are valid concerns and I am here to tell you that it will be okay when that happens.

Despite my best efforts, I still get mild MS flare-ups throughout the year. Because of my blog, I’m more aware that during the transitional times of the year, spring into summer, summer into fall, I am more likely to have some form of a flare-up.

These flare-ups can set me back a day, a few days, a week, and in one extreme case, a few months (though that’s been a while). 

I have learned to accept that these flare-ups are normal and move forward in my journey in spite of them.

New Journey; New Frustrations

Whenever starting a new journey there’s always moments of self-doubt. Will I succeed? What will the success look like? What would failure look like? How do I avoid failure?

There are always a ton of questions. When dealing with personal goals that require us to do extra work, such as adding in an extra walk for the day, looking over a boring task that you’ve been avoiding, or working through a particularly emotional part of your life; it’s easy to get stuck and want to avoid dealing with it altogether.

That’s part of the problem, something gets frustrating so we put it off and then we get discouraged and the cycle continues. Adding in a chronic illness where things happen out of our control adds an additional layer of frustration.

Chronic Attacks!

In the Multiple Sclerosis communities, we have many different names for when the illness/disease takes over: flare-up, exacerbation, and my personal favorite, the relapse. If you have another autoimmune disease, chronic illness, or personal wellness roadblock, you might have a different name for it.

To avoid confusion, let’s just call it an “attack.”

Attacks happen. You know they are going to happen and that might be discouraging, but it’s part of your normal like it or not. We might as well take a moment and embrace it. Our normal is not the same as anyone else’s normal. Let’s be honest: no one’s “normal” is like anyone else’s with or without a chronic illness.

The best thing we can do in these situations is to recognize that attacks will happen and prepare ourselves for dealing with them effectively. If you know what triggers an attack and how to manage it, then make a game plan.

Make the Changes Anyway

Since we know roadblocks with a chronic illness are going to happen anyways, there’s never going to be a good time to make the wellness changes you’ve been wanting to make. That’s why now is the time to make those changes regardless.

I would love to have a day where I don’t deal with any fatigue so I can do my yoga or respond to a bunch of emails that end up taking several hours. But I won’t get that day and if I do, I cannot plan for it. Chronic illness never allows me to fully plan when and if things get done.

If I want to do yoga or be productive, I have to make those changes regardless. Roadblocks with a chronic illness are normal, so it makes sense to accept them and work with the roadblocks when it comes time to start a wellness journey.

It sounds like I am saying “just do it,” and on the surface level, I am. But what is different is how you approach the “just do it” attitude. I am reducing a very complicated situation down to changing perspective because that’s the first step in a very difficult and very personal journey.

It’s all a Matter of Perspective

If you’ve been in the middle of your illnesses long enough, it’s easy to forget what it’s like to have a “normal” life. Concerns for attacks can rule your days, so you forget how different concerns would interfere with those who don’t cope with a chronic illness.

A car breaking down can take someone out of commission for weeks at a time, like an episode for us. Twisting an ankle might keep a person from exercising for a week until they recover, just like an attack.

Sure, we have the added concern the same things that happen for “normal” people happening to us PLUS dealing with an attack, but the point is –  everyone has things that can bring up a roadblock and stymie all progress made when trying to live a wellness-based life.

Maintaining the perspective that there is always a concern for an attack, but focusing on it ending (even though you don’t know when) and finding small ways to work around it will keep you going. Obviously, some attacks will prevent you from moving forward because if you are bedridden and there may be little you can do to adjust. However, if you are bedridden but able to lift a weight, even if it’s a book for a couple of repetitions, the very act of doing something may be enough to help keep you going.

Adjust your perspective to see that you are not alone because everyone has roadblocks, and that your roadblocks just look a little different than others.

Roadblocks with a Chronic Illness

As you begin your wellness journey, expect the roadblocks or attacks to happen, and embrace them. I am not recommending leaning into them to make excuses, but say to yourself: well, this is going to happen and I can’t necessarily change it, so I might as well work around these roadblocks to bring about a positive change in my life.

I cannot guarantee it because I am not a healthcare professional, but there’s a chance recognizing these attacks as normal and adjusting your perspective to be prepared for them might help lessen the attacks when you get them. It may never prevent them and what damage/time taken away from your life, but when you are ready for something you know how to effectively deal with it.

I have found that I’ve shortened the length of my attacks when I am prepared and don’t allow the attacks to discourage me or my progress. I tend to have an attitude of “well this is an annoyance, but I clearly need to slow down because I am overworking my body in some way.”

This suggestion and method of approach are not “one-size-fits-all” but if you’ve never tried to prepare yourself for these attacks in mind, it would be worth trying to account for them over the next couple of weeks.

For Wednesday, look for a post on how to begin the process of planning for and accounting for roadblocks.


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Good for the Nerves: Fall & MS

MS is a disease that’s affected by the weather, particularly extreme temperature variables. Summer and wintertime can be particularly rough because of the temperature swings on either end of the thermometer. The temperate or more moderate weather of the spring and fall can offer some relief for those who need it.

I know that for myself when it’s a consistent mid-70’s with low humidity, I am at my most comfortable. I find that I have more energy, able to sleep better at night and find the need for a midday nap to be lower. I still need naps because I have an energetic toddler, but I can skip the nap with minimal impact on my evening energy levels.

I know that my MS situation is different from others, so what is comfortable for me to function may be uncomfortable for others. That’s the unfortunate truth about MS – while fall is the ideal season for me to be my best, it can make others miserable. If fall isn’t your season, that’s okay because there’s bound to be another season that works best with your illness.

Fall Weather & MS (in the South)

All of this is to say that the fall weather makes me happier. I feel like we get more temperate days in the fall than we do in the spring, though if I looked at the temperature statistics I am probably wrong.

In the South, fall means that while we may still get 90-degree days, it feels like the day’s heat dissipates faster in the evenings and takes longer to be oppressive in the mornings. It also brings more rain during the hurricane season, which is less helpful because of the humidity, but ideal in keeping temperatures lower.

More Activities to Keep Moving & Healthy

As discussed on Tuesday, fall festivals are a great way to get out and enjoy the outside with family and friends. Going on hikes, particularly in the South, are more pleasant because the leaves haven’t dropped just yet, so there’s enough shade from the sun in the forest.

Walks are more pleasant to take in the evening, more importantly, less of a mental hassle when you don’t have to consider bringing a bunch of cooling supplies to keep from overheating (for me: ventilated shoes, water, and a hat).

As a runner, I find that some of my best personal records happen between the months of October and April because of the milder weather. I also don’t run into the issues of dehydration headaches after a race that I get in the hotter month. I get these headaches no matter how much I hydrate before, during, or after the race.

If physically able, yardwork is less oppressive as well. Raking leaves is a great cardio activity to get moving, as is trimming bushes.

While hydrating is still extremely important for those of us with MS, I find that it’s not as imperative as it is in the hotter weather. I also find my means of hydrating open up: I am a huge tea drinker and love drinking herbal tea in the fall. While drinking straight water is always recommended, drinking herbal tea is easier to swallow than straight, boring water.

Relaxing Atmosphere: Less Stress, Less Flare-Ups

Scientifically speaking, fall is a more relaxing time of year: we’ve been conditioned to enjoy it at least in the United States. Fall elicits cozy feelings, warmth, and togetherness ahead of the holiday season. The idea of sitting by a fire pit with a cup of mulled cider, a blanket, and good company is extremely relaxing.

My happy place is Pumpkin Spice Lattes which are a huge indicator of fall. That first sip of the year always relaxes me in the  “ah, fall is finally here” sort of way.

Stress is a huge factor for flare-ups, at least for myself, so having relaxing evenings helps minimize my stress. Any stress that comes during the fall is usually the kind I enjoy, i.e. planning gatherings, parties, events, and outings.

While my first flare-up happened at the beginning of December nearly six years ago, most of my flare-ups happen in the winter and summer months. I think because I have worked hard to make fall a relaxing time of the year for myself.

If you have MS or a chronic illness that is affected by the weather, what do you do to help manage it during your favorite seasons? What is your favorite season and why? Leave a comment with your thoughts below.


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Featured photo credit: Michelle Melton


Keeping a Clean Living Space

I have a love-hate relationship with cleanliness.

I love to be clean and organized, but I hate the work that goes into it. Having a toddler makes cleaning and staying clean Sisyphean at best. Nothing stays clean for more than ten minutes at a time with a human tornado.

This gets discouraging very quickly. Why bother keeping clean and organized if it’s only going to become a mess immediately?

It’s hard for me to get organized and easy to allow clutter to take over. I am ashamed to admit that it took until June to finally put all the holiday decorations away. They were removed from the main areas of the house but sat waiting to make it inside the storage closet we have in our room. Ash and I had to move around the boxes and clutter that kept piling up on a nightly basis as we got ready for bed.

For that, I hated spending time in our bedroom.

It took so long because it required a cleaning and reorganizing of our storage closet. We’ve accumulated a lot of old baby and maternity items that we’re not ready to part with just yet, so there wasn’t any room to put holiday decorations back inside.

This required an organization session, cleaning, and purging a lot of items. Making the time to do this is difficult with the fatigue and have limited energy stores day-to-day. Because a cleaning session wasn’t important in my mind, it kept getting pushed back in favor of working on other projects.

But that doesn’t mean the cluttered chaos didn’t cause issues.

Benefits to Clean House

Over the years I’ve recognized the benefits of having an organized house without a child: it’s a way to find things easily, everything has its place, and generally makes life easier.

I am also one of those people who gets depressed if my living space is messy. I am not just talking super messy but depression starts to set in even if there’s a little bit of clutter. So when the house “gets out of control,” I tend to freeze and get frustrated.

I am, by no means, obsessive over the cleanliness. When I can’t even get myself to spend 15 minutes tidying up because of either fatigue or feeling overwhelmed I feel frustrated.

There’s a lot of research available online that shows there’s a connection between healthy living, healthy habits, and healthy decisions and a clean/organized home. So my reaction isn’t surprising.

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Beating the Heat with MS

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Multiple Sclerosis is no fun. Especially in the summertime.

Around this time of year, every year, I find that my energy and motivation wanes and my productivity level drops. I am pretty hard on myself, always having high expectations of my abilities and what I can get accomplished on a day-to-day basis, so any time I feel like I am doing less than what I could be doing, I get really down on myself.

I recognized that there is a pattern to my productivity levels depending on the temperature outside. On the cooler days of late fall, winter, and early spring I am able to get more done every day. It isn’t perfect or guaranteed, I am just more likely to get everything done that I want.

But once late spring, summer, and early fall hits, when the really hot and humid days sink in, I find that I am lucky to get more than two major things done on my to-do list. Most days require me taking a nap and if I push myself through it (and therefore too hard), I won’t get anything done past a certain time in the day.

Weekends are the hardest. I am so worn out chasing Jai around all week that when I get the opportunity to stay in bed for most of the day while Ash does the “heavy” lifting, I do. And then very little gets done on my to-do list.

There is a definite correlation between my productivity and the weather.

And I am not imagining it.

Heat & MS

It’s well-known that MS and heat do not go hand-in-hand. Many other MS patients find that the heat can be particularly draining, possibly due to electrical connections between neurons no longer being efficient from the heat. Because of this, flare-ups are more common, especially for those who suffer from spasticity.

In researching this post, I learned something I didn’t know: prior to MRIs and other efficient tests to diagnose MS, patients were submerged in hot water baths to gauge their symptom reactions to the heat.

I find this fact particularly interesting considering my intense love of hot, hot showers. Ash does not understand why I love them so much. And now I don’t know why I love them so much, I don’t find that it affects my body in a negative way, in fact, I find them extremely relaxing and soothing. I should try some lower-temperature showers to see how it impacts my energy level for the day. I may be negatively impacting my productivity in favor of a hot shower.

The recommendations by medical professionals are for MS patients to avoid the heat and humidity as much as possible. Some recommendations go so far as to tell patients to move to better climates. This is all well and good, but sometimes it’s unavoidable, not economically feasible, or we don’t want to let the weather affect our social plans.

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