Tag: Disability and Parenting

Lifestyle & Blogging

The Struggle to Get Pregnant

MS//Mommy

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.

Continue reading “The Struggle to Get Pregnant” →

Parenting

Parenting with Multiple Sclerosis

MS//Mommy

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

MS//Mommy

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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Parenting

You Are Enough

MS//Mommy

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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Parenting

Managing Parental Time

MS//Mommy

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.

With my MS, my disability manifestation breaks down into two parts: brain fog and fatigue.

Brain fog makes it difficult to remember to do things, important details, and conversations. Fatigue makes it hard to get through the day, especially after chasing a toddler.

One of my biggest fears during pregnancy was that I would leave the stove on or forget Jai somewhere. That’s how forgetful I can be, “pregnancy brain” aside. Likewise, my MS makes it difficult to make new memories, so I can lose the precious moments that many parents treasure while watching their children grow up.

I have had to reorganize my life to manage my MS and improve my ability to parent. I’ve recognized what I excel at and what my limitations are and changed my routine to better balance the MS and child-rearing.

What works for me may not work for someone else because each case of disability is different, but hopefully it will provide some insight as to how I handle everything. It may not be super efficient, but I am flexible to keep adjusting as needs change.

The main thing that helps me make it through the day with brain fog is managing my time. It’s not a strict adherence to a schedule, but an acknowledgement to the natural flow of the day and accounting for periods of high energy or fatigue.

Managing Time and Priorities

When I feel unproductive, I get depressed. Even before my diagnosis I would get frustrated if I didn’t tick off marks on my checklist. Because I combat daily fatigue, I deal with the reality of not getting everything done which can lead to momentary depression and personal frustration.

In order to prevent these low periods, I must figure out ways to manage my time better in consideration with my energy levels.

I have the most energy in the morning right when Jai goes down for his morning nap and that lasts until he goes down for his afternoon nap. On days that I go for a run or exercise, my energy level might be extended an additional 2 hours, but I can’t count on that everytime. If the run was particularly challenging or discouraging, I may not have enough energy to make it through lunch.

Tracking my natural rhythms, a typical day might look like this:

  • 5-6am: Jai wakes up and we snuggle or slightly doze depending on everyone’s tiredness.
  • 6-7am: Ash takes Jai for play time before Ash needs to get ready for work. This gives me an additional hour of sleep.
  • 7-9am: Go for a run some mornings, otherwise make Jai’s breakfast and let him play until naptime. I typically have more energy during this period of time so I am able to do minor chores while Jai is awake.
  • 9-11am: Jai’s morning nap. If I am particularly exhausted I will use this time to nap as well. Otherwise I will write, clean, or organize the house.
  • 11am-2pm: Jai wakes up and we play, I make lunch, and if any errands need to be run, now is the time we do it. By the time 2pm rolls around, if I didn’t rest in the morning I am feeling very fatigued.
  • 2-4pm: Jai’s afternoon nap. I make sure to take at least 30 minutes rest, but some days I will nap for the entire duration of his nap. If he ends up napping in the car because errands or playdates run late – I do not get a period of rest in and I am usually exhausted by 4pm.
  • 4-6pm: More playtime, I make dinner, and when Ash comes home – we switch so he primarily takes care of Jai.
  • 6-7pm: Ash and Jai spend time alone, playing together. I use this time to rest or work on any minor tasks.
  • 7-8pm: Put Jai to bed.
  • 8-10pm: Ash and I spend time together relaxing before heading to bed ourselves.

As you can see, I’ve worked periods of rest when I can, but I am flexible for the days where I have more or less energy.

I will unashamedly admit to this: on my bad days when I have absolutely no energy, I will make sure all of Jai’s needs are met (diaper, food, water, etc) and put him in the crib with some toys and lie down in another room with the monitor on. If he needs me or gets frustrated with being left alone, I will go immediately to him. But I take this time to recharge even a little so I can make it until Ash comes home.

The key to making it through the day is figuring out how to manage my time. I know when I have the most energy – I know when I need to rest. That helps me figure out when I will be the most productive and I attack important tasks during that time.

But as this article points out, time management only gets you so far.  So it’s a bit misleading to say it’s all about time management: it’s really about priority management. Time management comes naturally once priorities are established.

This is how I go about managing my priorities:

  • Each morning I figure out what is the most important thing I must do and add it to my to-do list with a priority assigned to it. “1” is most important, while “3” is least important. I add all other tasks for the day and assign priority.
  • Once I have established importance of priority, I figure out when during my day I am able to achieve that task. Some things must be done in the morning when I have the most amount of energy, while other things wait until later in the day because my energy level is less important to the completion of the task.
  • I do not underestimate the power of checking things off in order to feel productive. There may be days where I write every single detail of a task down on the to-do list because the only thing that keeps me moving forward are the tick-marks indicating “done.”

    I think one of my favorite apps said it best with this tweet:

If time management isn’t working for you, don’t scrap it completely, but adjust your focus to priority management. Once you’ve figured out your priorities, you can manage the time needed to get those priorities done.

And don’t be afraid of rolling those tasks over day-to-day. They will get done eventually.

The Importance of a Calendar

Maintaining a schedule helps keep things straight when it comes to my brain fog. I have tried physical calendars/planners in the past, and while I love the romantic notion (and flexibility) of them, I find that I am less likely to maintain or look at them.

I always have my phone on me and with Google calendar I am able to share my schedule with Ash. I also love how my Google Calendar integrates with my email, so if I am making plans via email I can click a couple of links in order to automatically add something to my calendar.

Because it’s always by my side I am more likely to look at the calendar, add reminders, and add in events. It is the most effective way to keep my time organized and prevent me from forgetting important things.

I have learned to tell people “hold on, let me put this in my calendar otherwise I’ll forget it.”  I still forget to add to my calendar sometimes, and therefore double-book myself or forget about something, but chances are decreased if I am comfortable stopping everything in order to update my calendar.

By removing the need to keep track of things in my head and placing them externally, I am taking control over my brain fog. While it won’t ever go away completely, I am doing something that is recommended to people without disability and therefore normalizing my actions (and not allowing the disease have control). This helps bolster my productivity and decrease my frustration.

Keeping Lists

While I love to have a digital calendar, I find that having a physical to-do list for my on-the-fly tasks helps more. I do use a digital to-do list for my repeatable daily activities, but as I am going along, I am more likely to write it down on some paper than enter it on my phone.

But list writing can be boring and cumbersome so to make it interesting for myself, I use Knock Knock pads around the house for my various lists. Below are some of my personal favorites:

*I receive compensation for these links.

Like with a calendar, I am no longer allowing my brain fog take control of my life by creating lists, but I am also making my abstract ideas more concrete. They feel more achievable when I look at them on paper.

The trick is to not lose the paper and remember to recycle them.

Remaining Flexible

I always remember that I need to be flexible throughout my day, no matter how well planned I have it.  Some days will be ideal and I will be able to get a lot done and other days I’ll need to accept that I won’t get everything done. Remember that that is okay is key to not getting depressed by low-productivity.

I make sure to build flexibility into my daily schedule.

I acknowledge my fatigue and brain fog by knowing that I might get over tired or I might forget to do something. I work in an extra 20 minutes for a project or an extra 30 to get Jai ready for a playdate because, well, toddler.

What do you do to help keep you focused and manage your disability (or if you don’t have a disability, yourself)? How do you combat the threat of low-productivity? This is something that interests me, so I would love to hear your suggestions and tips. Comment with them below.

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