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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The Struggle to Get Pregnant

Before launching into posts about motherhood, I wanted to spend a post discussing the struggle Ash and I went through to get pregnant. It wasn’t as difficult as it was for some couples, it took about six months from start to conception, but it was an emotionally turbulent six months filled with hope and a lot of disappointment.

I am merely sharing my experience, so please do not take any of my observations as advice or “how-to” when it comes to trying to conceive. Everyone’s story is different and uniquely personal to them.

Deciding to Start a Family

Growing up I never wanted to have kids.

I was of two minds on the subject: I didn’t want to contribute to possible overpopulation and I thought I would be a terrible mother. Back in high school, I did some research for a prepared speech on veganism and one of the sources I found talked about how having children was detrimental to the environment.

Super idealistic and driven to save the world at 16, I decided that I didn’t want to have kids to do my part. Looking back, this is a fantastic attitude to prevent having kids but easy to do when you don’t have a boyfriend.

This attitude stayed with me for a long time and I built upon it as I grew older: children limit your time, your resources, your ability to do anything fun. Children were a ball-and-chain and I wanted nothing to do with it.

I also hadn’t met anyone until Ash that I wanted to have children with so again, this was no major sacrifice on my part.

Ash was of a similar attitude when we first met. He didn’t want to have kids for much of the same reasons and so we settled on an agreement to not consider having children. At least for several years into our relationship and marriage.

Unfortunately for me, biology had other plans. I was in a stable relationship, income, house…we had the means to be parents and my body said it’s GO TIME.

As baby fever started to grow, Ash and I decided that we still weren’t ready to consider children just yet. This was before my diagnosis and I was in the middle of my graduate program.

So we adopted a third cat instead.

The little furbaby did his job for about three years, but when 2015 rolled around and I was two years into my diagnosis I reached a critical point: if I was to have children, it needed to be before I was 35. There was the potential that my MS would transition into SPMS by the time I was 40 and I wanted to have at least five years of quality time with any child.

Thus started the fun negotiations of “should we/shouldn’t we” with Ash.

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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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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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You Are Enough

This is the final week in a 3-week series on parenting observations. Week one is based on gentle parenting, week two is about parenting with compassion, and week three is about parenting with a disability.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgement.


In this final post of my “parenting observation series” I want to leave this as the major takeaway: we, as parents, are enough for our children. If we provide food, shelter, clothing, comfort, and education, no matter how imperfect it may be, we are enough for our children.

There is a lot of outside pressure on parents to be perfect and have it all: have the perfect house, job, relationships, food, clothing, education – the list goes on and on.  No parent can ever win the external societal judgement game. The standards for good parenting as dictated by outsiders is so high that it can drive us bonkers.

For those of us with the added obstacle of a disability, seeing what parenting without a disability looks like can be even more discouraging. But our children rarely see the disability in the same way we do.

We must practice self-compassion and ignore everything the outside world has to tell us about our parenting abilities. The only people who need to be in our minds is our children and how they view us.

And surprise: our children will love us no matter what and overlook any perceived imperfections we think we might have. They are, at this point, incapable of seeing our imperfections.

Remember how you viewed your parents in early childhood: one parent was stronger than Superman and the other was the only perfect source of comfort. Sometimes both aspects manifested in one person.

Our children view us no differently. They don’t see the same flaws or recognize what we cannot do. What they see is what we are capable of doing and how that relates to them.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

 

Being the Perfect Parent is Overrated

One of the biggest issues I have as a parent is worrying that I won’t be perfect enough for my son. I push myself to the point of overload trying to be perfect on a daily basis, so it would follow that I would want to be the perfect parent to Jai.

This is not possible.

In fact, it is strongly discouraged to be a perfect parent for a child. Making sure that everything is done for them, they get all that they desire, the house is immaculate, and they get perfect grades every single time (so you help them out) – all lead to a dysfunctional relationship and stunt a child’s abilities to manage the real world in a healthy way.

If children do not learn about the world, how to manage adversity, and how to critically think through various problems if the perfect parent is doing everything for them, they will struggle as adults on their own. Learning about disappointment and how to manage it is a valuable lifeskill that gets lost if a parent avoids exposing a child to conflict as part of their perfect parenting routine.

Attempting to be the perfect parent can also create bouts of depression in the parent striving too high. This is not surprising because the attempt to be perfect outside of parenting raises a person’s chances of being depressed (I currently suffer from perfectionist paralysis in my own life).

By attempting to be perfect for Jai, I am setting myself up to be less able to help him if I am too depressed by my need for perfection. It’s a vicious cycle.

We want to fail as parents from time-to-time. It humanizes us to our children and helps strengthen any relationship that develops once they are adults. Providing a healthy example of failing in an adult and focusing on what they can learn from us and from their own failings will help promote long-term success in their own lives.

It requires a level of self-reflection that may be hard to swallow, but in the end it helps us grow as adults too.

Saying “I am Enough”

All of this isn’t to say that we should go out and purposely fail, but to acknowledge in a gentle way that it will happen and that’s okay.

Focus not on any failings you might have such as “I could have done this differently today,” or “I could have handled that situation better,” but on what they teach you and all the positives you did throughout the day. Our brains are wired to focus only on the negative, so it is important to rewire them to allow the positive in more often.

If something happens that makes you feel like a failure, try these steps to work through it:

  1. Apologize to your child if necessary even if they are too young to understand. It’s a good habit to get into and makes it completely normal for them when they are aware of it.
    • “I am sorry I yelled at you when you took off your diaper and got poop all over the floor. I was upset over the smell and the mess I would need to clean up. I understand that you are not aware of how much I dislike poop, so I am not upset with you, just upset over the situation.”
  2. Figure out what you could have done differently and create a plan of action should the incident happen again. Spoiler: it probably will.
  3. Take a few minutes to breath and comfort yourself. If you are tense or stressed out, make a cup of tea and allow yourself a few sips before continuing about your day.
  4. Forgive yourself for that failure. Remind yourself that you are not perfect and that is okay.
  5. Find a couple of things that went right during your time with your child. Focus on them any time you start to think about something negative.
    • “We sat and read three books, one of them being my favorite. I could tell my little one really enjoyed my favorite as well.” or “We ran around the chair for 5 minutes laughing at each other over how silly we were being”
  6. Repeat to yourself: “I am a good parent/caretaker, I do the best I can, I am enough for my child.”

All of this will take some time because we have to undo years of bad habits, but starting off slow will help build confidence and self-compassion  in our abilities as parents. These examples will benefit our children in the long run. It’s really about focusing on what we are able to do – not what we can’t do.

And remember: you will always be enough.


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