Parenting

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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Parenting

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.

Continue reading “Being Okay with “Normal””

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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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”

Personal Motivation

Checking In: Coping with Personal Stress

Today a major milestone in my health journey. Five years ago today, I had my very first MS flare-up. At the time, I didn’t know what it was, but I was lucky enough to get answers less than a year later.

Today’s post contains a more in-depth tale of my journey to the MS diagnosis and what brings about my flare-ups. Read the shorter version here.

2012: The First Time

A few days prior to my flare-up, I finished up my final classes, got my grades in, and flew up to Connecticut to help my parents move. As an only child with one year of marriage under my belt, my parents wanted to leave the cold hollows of New England and join Ash and me in Georgia.

This was a particularly hard journey for me because it meant that I would be saying “goodbye” to my childhood home. We moved in when I was 6 and I had many fond memories stored inside; there were over 20 years of memories and I was extremely sad to no longer have the ability to visit it.

December 13th would be my last night sleeping in my old room, and on the 14th I would help my parents finish loading up the moving truck and help them drive down to Georgia over the next three days.

I was not in a good mood. I was grumpy, irritable, but most of all, stressed out.

It was my second year teaching college students composition, struggling with normal Graduate school stressors, and now the final stress of losing what felt like a family member was too much for me.

But there would be more.

On the 14th, a little more than an hour away from my location, Newtown happened. I had to keep it together to help finish the moving process, but inside I was really struggling with all of my feelings. I had a tight burning in my chest as I swept and mopped the living room floor. I had to keep everything together.

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The product of my labor: a clean living room floor. Possibly the only time I did this chore in this house.

 

We loaded up the truck around 6pm, my mom and I hopped in her car, and we headed south while my dad followed in the moving truck. We were headed towards Pennsylvania where we planned to stay for the night at a motel.

I slept on a pullout bed which was extremely uncomfortable. I was exhausted, so I didn’t think much about the day’s events, and I fell asleep.

When I woke up, there was an oval spot in my right eye’s field of vision. I had a slight headache and I was feeling unwell. At first I thought my glasses were dirty, but no matter how often I cleaned them, that spot wouldn’t go away. I rubbed my eyes thinking there might be some junk with no luck. I didn’t understand what was happening as we went to get breakfast at the local McDonald’s.

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Found on the restroom door of that McDonald’s. Even with the spot in my eye I could see how dated this was…

I had had migraines before, but I never experienced an aura prior to the migraine. Normally I would not have a migraine and then boom, migraine without warning. My migraines were increasing in frequency. I would have one once a year and I was starting to get them every 6 months or so, so when I looked up my eye symptoms, it seemed like a natural progression.

Figuring it was an aura, I was relegated to being the navigator when I didn’t have a black skull cap I bought at a gas station over my eyes to help manage what I thought were the beginning moments of a migraine. When we stopped in Virginia for the night we all thought the spot would go away with a good night’s sleep.

It did not. In fact, it got worse. It didn’t cover my whole field of vision, but it was more prominent. The day before, I could kind of see through this smudge. Now it was a translucent spot that partially blocked objects.

I was definitely scared. I didn’t know what was happening and how to fix it.

Continue reading “Checking In: Coping with Personal Stress”