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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Adaptive Parenting

While MS can make parenting a little bit harder and I have to be okay with my limitations, there are ways of working around it and still be able to be the parent I want Jai to have in me.

Remembering that I am enough for my son and he won’t necessarily recognize my limitations helps as I plan workarounds in our daily lives to minimize MS’s impact. As he transitions to a different developmental stage, my adaptations will evolve and I may be able to do more for him as he gains his own independence.

This isn’t meant to be taken as advice or “what should be done,” 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

On Monday I 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 Jai around like I want to and mental fog/memory loss means that I can’t recall information as quickly as I would like to answer questions or teach concepts.

Below are some ways I actively adapted my parenting due to the MS. I am certain there are other things I do without thinking that are adaptations, but I don’t know what thos would be.

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 in a safe manner. When I need to intervene, I do, but for the most part, I allow him to entertain himself when I am feeling particularly fatigued.

This is good for him in several different ways: it grants him a safe form of independence that will help boost his confidence; allows him to critically think through a problem, like detangling two toys; and discovering his abilities or limitations. When we are out of the house and around other children, I have found that taking a hands-off approach has helped improve his socialization with others in ways that my teaching cannot.

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 make sure to warn him if I find my energy is flagging so it is a sudden stop in playing from me or I redirect the play into something less high-intensity, like reading a book or playing with a stuffed animal.

I have found that “warnings” have helped minimize any sort of upset feelings. Warnings have a negative connotation but they are me saying: “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 a 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 him 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 (or longer depending on my need), 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 for a duration of time, 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.

Mental Fog

This is the tricker adaptation for me. Figuring out what I know and what I don’t know and being okay with both answers.

Currently, I use my phone and my smart speaker to help me with reminders and timers. While this isn’t much help as far as advice is concerned, utilizing the tools there help keep me focused and on track with things that might previously be an issue.

As Jai gets older and I need to answer questions, my plan will be to use my phone as a teaching tool.

If I cannot give him an answer off the top of my head, I will turn it into a teaching moment: “Mommy does not know the full answer to that question, let’s work together to figure out how to research that.” I will then walk him step-by-step through the process of figuring out the right question to ask a search engine; how to analyze sources for trustworthiness; and discuss how he feels about the answers to the question, or where to continue our research.

We live in an age where having personal computers at our fingertips is normal, so introducing him to their research abilities early on will be a good thing, provided I limit the screen time appropriate for his age.

Acknowledgment?

I put a question mark at the end of this header because I don’t know the answer to the question: do you acknowledge that you’ve made parenting adaptations to your child?

I will be discussing teaching your children about MS next week, but I wonder if not calling attention to the changes I’ve made helps normalize my parenting. As Jai gets older and able to recognize the difference in parenting styles from Ash and myself, we will acknowledge it but until then I want to maintain as much of a normal childhood as possible for him.

For those with MS or other conditions that limit your parenting abilities, what have you done to make adaptations to your parenting? Have your children noticed and what do they think about it? Leave your suggestions and comments below.

 


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Being Okay with “Normal”

Content Warning: some discussion of depression and negative self-talk. If you are depressed or know someone who is depressed and in need of help, please look at the resources available through the Anxiety and Depression Association of America. You can find support groups, therapists, and treatment options here. You are not alone.


Before figuring out how to make adaptations to my parenting, I had to learn to be okay with my new normal. Parenting with MS requires a few extra steps but with some adaptability, it’s hard to notice that there’s a difference.

It’s frustrating that I can’t be the parent I want to be, but I have to be at peace with myself. No amount of changes can stand up to feeling discouraged about my situation. Discouragement is normal and should be honored when it occurs, but how I cope with that discouragement matters.

This isn’t meant to be taken as advice or “what should be done,” 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.

A Fight for Control

Recognizing that I have no control over my fatigue and mental fog is the first step I’ve had to take to accept my limitations. I find workarounds with my fatigue (more on that in Friday’s post) and mental fog, so I am not giving into the lack of control. I am accepting that I cannot control it and there’s a huge difference between the two.

Hi, my name is Deborah and I am a control freak.

I’ve admitted this several times on the blog. I like to be in control of every aspect of my life: from relationships to professional projects, I try and control everything so it can be what I perceive to be as perfect.

Psychology does not support this attitude: maintaining strict control over everything is the quickest way to be extremely stressed out and unhappy. It may cause everything to spin more out of control if I try too hard.

As the linked article points out: “Wanting control leads to anger; this emotional response increases when control is impeded.” The more I try to control my situation, the more frustrated I get and exacerbate the situation.

How do I try to control my MS?

There is a level of regression that occurs in my grieving process: I go into denial and try to forget that I have MS. I will push myself physically and mentally and completely ignore my body’s warning signs.

Looking at Spoon Theory: if I use up all of my reserves (and then some) I have the potential of not being able to do anything for the rest of the day and possibly the next day. This happens more than I care to admit because I just want to get everything done on my “to do” list.

That’s why working on my priorities every morning is so important.

Emotionally, I try to control my MS by being hard on myself. I will berate myself if I wasn’t able to do a particular task to my liking or if I don’t get a post/email/social media interaction out in a reasonable amount of time. I find that I will sink into a slight depression when I focus too much on what I can’t do for myself and my family.

MS cannot be controlled. Its very nature does not allow for control.

Most of my frustration stems from a belief that if someone else can handle multiple projects at one time, why do I struggle to do a single task? I am constantly comparing my abilities to others and wishing I measured up.

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