Lifestyle & Blogging

Benefits of Light Exercise

Getting motivated to exercise after a prolonged winter is hard.

This has been a particularly difficult year in the United States, as we’re experiencing another cold snap in April which is unusual in the Southeast. Engaging in outdoor activity is discouraging when you have to bundle up like it’s the middle of winter.

There are ways to work with the cold weather and kick-start exercising even on a minimal level to help restart those resolutions. Light exercise tends to be discounted in favor of moderate or vigorous exercise, but it does have its health benefits if that’s all you can do.

Taking a few moments to shake up the daily routine, no matter your time or fitness level can go a long way towards becoming healthier.

Continue reading “Benefits of Light Exercise”

Parenting

Parenting with Multiple Sclerosis

Back in February, I did a post about Parenting with a Disability. This was about disability in general, not MS specific. Today, I will be revisiting this post and expand on some of its ideas while focusing on my personal experience of parenting with MS.

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 what works for you and that’s the most important thing.

Parenting through the Fog

Two of the biggest issues I face with my MS is fatigue and mental fog.

Every day I wake up feeling like I did not get a full night’s sleep, even if I did. The best way to describe it: I feel like I am walking around in a thick, goopy mud that makes me work extra hard to get through each step. The idea of going up and down the stairs to grab one item is extremely overwhelming on my worse days.

Says the person who gets up 3 days a week to run a couple of miles and just completed a half marathon yesterday.

But that is the issue with MS.

There are days when I have enough energy to do something strenuous and then incapable of doing anything for the rest of the day. Then there are other days where I do practically nothing and its still near impossible to get through the day without crawling back into bed.

And still, other days where I do something strenuous and I am able to do anything and everything all day with little-to-no consequences.

I find the inconsistency extremely frustrating. I am a person who loves to know what to expect and when to expect it. MS forces me to be patient with myself and I don’t like that.

Additionally, I struggle to remember things. The mental fog is infuriating because I can be looking at an object and pointing at it and be completely incapable of getting my mind to recall the object’s name. When I have these moments, I have to slow myself down and try to do what I can to work through the recall in a slower manner.

I know this day is coming and I am trying to prepare myself for when it happens, but Jai is going to mimic my ritual for recall and it’s going to break my heart when it happens. I can’t fault him because he will be doing it from a place of love and innocence, but it’s going to hurt to see a reflection of what I have to do to recall something through the mental fog.

Limitations in Parenting

It is very clear that I have some limitations with my parenting. There are days where I struggle to keep up with Jai and Ash has to help me out or I have a slower day where we sit in and I watch Jai as he plays a game by himself.

I really wish I could be more interactive in my time with him all the time, but I cannot. I wish I could remember certain things that Jai does, but I cannot. I feel like I am working with a severe handicap (and to a certain extent, I am). Some days I feel like if I will it hard enough I can shake myself into normalcy. I am just not trying hard enough to be more normal.

But that’s not how that works. Which is infuriating for a perfectionist like me.

I recognize these limitations and I try to do what I can with them. Wednesday will talk about learning to be at peace with my imperfections and Friday will be about how I’ve had to adapt my parenting after making peace with myself.

What sort of limitations have you found MS has brought to your parenting? Comment with your experiences below.


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Information Huddle

Raising Awareness for Multiple Sclerosis

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

Busting misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want. If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

How to Raise Awareness

The rest of this week will detail ways to raise awareness based on your abilities. Wednesday’s post will be about events and opportunities to participate in MS activism and the community. Friday’s post will be about ways to start or participate in fundraising opportunities.

I provided some simple banners you could use on your social media accounts to help raise awareness this month for MS. Please feel free to download them for personal use.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure. From Cambridge University alone:

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.


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Lifestyle & Blogging

March is Multiple Sclerosis Awareness Month

In honor of MS Awareness month and week (March 11-17), MS//Mommy will feature a series on the following topics: raising MS awareness, getting involved, advocating for your health, dealing with an MS diagnosis, parenting with MS, and educational tools for family and strangers.

MS//Mommy blog has a new look for the month, so please stop by to check it out.

 

Raising Awareness on Social Media

I’ve made a series of banners and images that you are free to use to help raise MS awareness. These are free to download for personal use only. For professional use, please contact me.

Please do not remove the msmommy.blog credit on the photo and make sure to credit MS//Mommy in your post. Credit information for each medium found below.

Facebook

Download a Facebook cover photo for the month:

Cover Photo

Be sure to tag the MS//Mommy Facebook page when you use this photo. Don’t forget to check out the page and give it a like to follow for MS stories and relevant articles to blog posts.

If you are a Facebook user, I created this profile frame. Follow the link below to use the frame:

Twitter

Twitter banner:

Twitter Banner

Tweet credit @msmommy16 and use the #msmommyblog

Instagram

Instagram image:

Instagram Photo

Tag and include @msmommyblog in your post description and use the #msmommyblog

Share Your MS Story this Month

If you have an MS story or advice that you would like featured on the MS//Mommy Facebook page, please email me for more information.


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The Check-In

Checking In: MS Symptoms

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, but 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 cold like this they may feel wiped out but are able to 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 key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key 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, but 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.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but 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, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, 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 means that I have more energy throughout the day and days I do yoga there might be a greater 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 appreciable changes to my MS symptoms.

Continue reading “Checking In: MS Symptoms”