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.

Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

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”

Lifestyle & Blogging

The First Couple Days…Weeks…Months…

This is a conversation I wish someone gave me when I first received my diagnosis. While it is tailored specifically to MS, I hope some of the thoughts are universal enough for any difficult medical diagnosis.

CW: Discussion of suicide, self-harm, and depression within this post. If you or someone you know is feeling suicidal, please contact Lifeline at 1-800-273-8255. If you are in crisis, text CrisisTextLine to connect with a crisis counselor. You are not alone.

After I got my MS diagnosis I went through a period of shock and relief. I was shocked that it was MS but relieved to finally have an answer. Ultimately, the shock overpowered the feelings of relief and I found that my emotions spiraled out of control.

I don’t remember the first couple days, I think I was numb from trying to process the information: it was like finding out a loved one had died. Every couple of minutes I’d get distracted enough to forget, but as soon as I turned my mind to it, my heart sank and it felt devastatingly fresh again.

The numbness I felt was me unable and unwilling to process the news. 

I was aware of MS since High School because my art teacher had it. I remember my mom telling me about MS, explaining why my teacher may seem fatigued or snappy towards the end of an afternoon class. I also remember sitting in the art room, watching my teacher gush about Cezanne and thinking two things to myself: one, “Oh god, I hope I never get MS;” and two, “it would be the end of my life if I ever got it.”

I was wrong on both thoughts. I may have MS, but my life isn’t over.

So You Have MS

Welcome to Club MS where no one wants membership. 

Right now you’re searching online for meaning and information. There is a lot of information out there and I understand that this post is going to add to the noise. I wrote a simplified post about MS, but I recommend checking out the NMSS for thorough information on the disease if you want specific medical details about MS.

I am not going to offer advice on how to cope with the news of the diagnosis, but provide insight to what I went through to normalize your experience to a certain extent. While working through a diagnosis is unique to each individual, there are certain aspects to the process that are universal. You are not alone in this journey.

There’s a good chance you will go through a range of emotions like I did. Hopefully, relief will be one of them because there is a sense of calm of finally having an answer to what is going on with your body. It makes what is intangible – tangible. What was presumed to be just in your head is now externally acknowledged by a medical professional.

These feelings of relief probably won’t comfort you past the first 48 hours or so. But it is something to keep in the back of your mind for later as you move through your coping process.

The next set of emotions may be frustration and betrayal.

I was frustrated that my body was attacking itself but equally betrayed by it. Here I was, at the end of my 20’s looking at a lifetime of disease; where Ash would have to take care of me if I progressed past a certain point; and I would be a physical, mental, and emotional drain to all of my loved ones.

As a younger person, the idea of having a disease or getting sick was something that happened to other people. I took what was presumed perfect health for granted. I remember thinking to myself: I lived my life relatively well, I was a good person, I did what I was supposed to, why is my body punishing me? What wrongs was I atoning for? This does not happen to good people.

I sank into a deep depression. I was completely lost about what I was facing, how I would face it, and how I would get through it. I felt completely selfish because I could only think about myself. I couldn’t and didn’t want to think about anyone else.

I went to a very dark place and stayed there for several months. There were moments where I was suicidal over the whole situation. If I killed myself, I would regain control of an out-of-control situation. More importantly, I would be able to remove myself from Ash’s life and no longer be a burden to him. The sooner I did it, the sooner he could move on and find a healthier partner.

I never acted on it, never made any serious plans. Instead, I pushed it down the road: if I start to be a burden for my loved ones – then I would do something about it.

I am not saying, nor am I recommending entertaining these thoughts, but by pushing the desire back it helped give me the clarity to healthfully resolve my thoughts on the matter and get to a point where suicide was no longer a viable option at any point in time.

It was around this point that I realized I was going through a form of grieving after getting the diagnosis. Grieving a medical diagnosis for yourself is, in fact, normal. It helped contextualize what I felt in the months after my diagnosis. It also helped me move through the stages more effectively because I now knew what I was experiencing was normal.

Continue reading “The First Couple Days…Weeks…Months…”

Information Huddle

MS Fundraising Opportunities

Fundraising is important to the longevity of a cause; it raises awareness, helps fund research, provides opportunities for those without financial means, and helps bring in volunteers who want to do more.

Fundraising for a particular group, like the National Multiple Sclerosis Society, helps create and sustain programs for those with MS and their caretakers, fund research opportunities, and hopefully fund a cure. Below are some ways to find a fundraiser right for you or creating one that fits.

Finding a Fundraiser

If you want to get involved in a current fundraiser – I have compiled some reputable sources that have ongoing events.

Creating a Fundraiser

If there isn’t a fundraiser in your area here are some tips for getting one started. For those outside the United States, you should be able to find a local MS group that will accept donations.

Other Ways to Raise Money

If you are like me, I love to shop with Amazon for pretty much anything. Several years ago, Amazon started a program where a portion of qualified purchases will go to the charity/non-profit of your choice. The cool thing is this is a portion of the purchase, meaning Amazon doesn’t raise the price of the item so it is at no additional cost to you to participate. If you already shop at Amazon it’s a great way to donate to the NMSS.

We selected the NMSS for our charity of choice and to date, the NMSS has earned nearly $143,000 for qualified purchases through the program by all who participate.

To learn more: Amazon Smile! program.

Facebook has been pushing “raise money for your birthday” feature, but at this point in time, there aren’t any national MS organizations available. I have looked into ways to change that, but Facebook does not make it easy to find any useful information. I will update this post in case anything changes.

What MS fundraisers have you participated in or recommend? Please leave a comment below with your experiences.

Liked this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Information Huddle

How to be Active in the MS Community

You don’t have to have MS to be active in the community, nor do you need to be aggressive in your activism. Getting involved to fight MS can take many different roles: spreading awareness on social media, joining lobbying groups, joining a social networking group, or starting your own fundraiser. Or it may be supporting your loved one who has MS by being present for them.

Whatever the level of involvement makes you an activist and appreciated by the MS community.

I have compiled several different ways you can get involved based on abilities or interest level below. All of these suggestions are geared towards North American activism, but some are global in nature. Check locally to see what opportunities your country might have for you.

Continue reading “How to be Active in the MS Community”