Personal Motivation

MS Awareness Month…Final Thoughts

As we finish up MS Awareness Month I wanted to reflect on some thoughts that came up throughout the month.

I found this month to be deeply meditative because it forced me to confront some unresolved conflicts with my diagnosis. While I’ve moved into the acceptance stage with my MS diagnosis, there was some information that I ignored throughout the denial stage that I resolved this month. I had avoided, up until now, to learn the truth about the minor details.

It also forced me to consider how to have the MS conversation with Jai. While he’s too young to understand what MS is, being prepared to have the conversation will keep it natural and hopefully not overwhelm either of us.

I have been overwhelmed by the response to this month’s most popular post: “The first few days…” I honestly hadn’t expected this post to be popular. It was the hardest post to write, I worked on it for about two weeks because it emotionally put me back in the days right after the diagnosis. Those were some dark days, but I was able to pull them to have brighter days and feel more hopeful about my future.

I am hoping that its popularity meant it resonated with others and will provide some measure of comfort during those darker times.

Overall, this month was a difficult one to blog through because many of the posts required a level of emotional and mental fortitude I hadn’t expected. I poured a lot of myself into these posts and I am deeply grateful for the positive responses I’ve received from my various social media accounts.

But this was a wonderful month, it allowed me to feel connected to the MS community on a deeper level and amazed at all the strong fighters in my ranks. I conquered my third half marathon and have had the opportunity to work with some other extremely talented bloggers. Overall, this month was a success.

And remember, MS can’t catch us.

MM-MSMommy-tshirt-blackandwhite


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Information Huddle

Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

Continue reading “Talking to others about MS”

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

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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Personal Motivation

Now What? Beyond the Diagnosis

On Wednesday I published a deeply personal post about the first couple of months after getting my MS diagnosis and how I went through the coping and grieving process. Because it was an emotionally charged post, I wanted to balance it out with a post about finding acceptance and the healthy ways I’ve tried to manage my MS both physically and mentally.

First, let’s get this out-of-the-way: Any changes made you have to want for yourself and they will occur in the amount of time appropriate for you.

Do not let people, myself included, tell you that you have to make changes in a specific timeline or before you are ready.

Do not read this post and feel like you aren’t doing enough to manage your grief or your diagnosis. You are unique and different from me and that’s okay.

You will make the changes when you are ready.

Despite this, there are things I cannot recommend:

  • Staying stagnant and giving up
  • Engaging in self-destructive behavior
  • Refusing to be open to new experiences

In my last post, I engaged in all of the above behaviors at one time or another, so when I say I cannot recommend them, I say it from personal experience. If you find that you are engaging in one, some, or all of these behaviors, it means you are still working through your grieving process.

That’s okay, but ideally, you want to move beyond the grief at some point because it brings a personal peace that makes the pain and frustration more manageable.

So what does it mean to transition into acceptance?

Continue reading “Now What? Beyond the Diagnosis”