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

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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recovery-after-ms-exacerbation

Recovery after an MS Exacerbation

So you’ve had a relapse/exacerbation/flare up. Hopefully, you’ve already had the conversation with your healthcare professional about managing the flare-up. You may take high doses of steroids to reduce the inflammation, but you’re coming down from the drugs and looking at recovery. What does recovery after an MS exacerbation look like?

Like all things MS related, your recovery is going to look different from mine which is going to look different from someone else’s. Having some ideas of what you can expect and what you can do on your own might help plan your next exacerbation recovery.

I am not a healthcare professional so all that follows should not be taken as medical advice.

Relapse-Remitting & Recovery

With Relapse-Remitting Multiple Sclerosis (RRMS) there’s a chance of recovery after each exacerbation. That means, there’s also a chance you won’t go back to the way you were prior to the flare-up. After my second major flare-up when I was abroad, I never got my full feeling back in my right index finger and thumb.

When you don’t go completely back to the way you were before, it’s extremely frustrating. But there are some ways to manage your recovery as a means of self-care, i.e. taking back control of your body. These are forms of complementary care: suggestions to work in tandem with your medical treatment.

Because I have RRMS, I can only speak to what recovery looks like after each exacerbation. If you have Primary-Progressive or Secondary-Progressive, recovery is going to look completely different. What follows are based on my experience dealing with RRMS.

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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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roadblocks-with-a-chronic-illness

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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