The MS Chronicles: Helping Kids Deal with a Parent’s Chronic Illness

Eight years ago I became a parent for the first time.

Ten years ago I was diagnosed with relapsing remitting multiple sclerosis.

Simple math will tell you that I’ve been parenting with MS for my entire parenting experience.  I don’t know what it feels like to parent without a chronic illness.  In my head, I have this idea that parenting would be completely different without my multiple sclerosis but who knows if that’s even close to the truth.

What I do know is that my multiple sclerosis changes how I parent my children, both emotionally and physically.  Since I’ve had MS their whole lives, there was no point where I ever sat them down and had the “this is what Mommy’s doctor diagnosed her with today” talk.  It’s just been part of their life for the last 8 years.  Our discussions about my brain and it’s dysfunctions are a common source of conversation (and occasionally laughter) around our home.  However, there are some intentional decisions I’ve made to help our kids process the information and create an environment where they don’t fear my disease and it’s implications.

Educate

A couple of years ago, our whole family watched the ESPN documentary called “Catching Kayla”.  If you haven’t ever seen it, you need to!  It’s a great story of Kayla Montgomery, a state champion track runner, who was diagnosed with MS in high school.  The beautiful part about her story is that her coach would catch her at the end of every race.  It did a great job explaining MS and gave just a beautiful picture of how this young girl persevered though so many obstacles.  My girls STILL talk about it and was one of their first introductions to MS as a disease.

Another resource that might be especially helpful when helping kids deal with a diagnosis is Keep S’myelin, a publication from the National MS Society.  We haven’t ever used that with our girls, but the materials look great!

Be Honest, Yet Age Appropriate

My girls see me take my medicines every morning.  When they first started noticing me taking them, they were curious what they each were for and why I had to take them.  My response?  “Well, these are Mommy’s brain medicines that help my brain tell my arms and legs what to do”.  If I was self-injecting a medication like I used to, I’m sure there would be even more questions and possibly fear to deal with it.  Thankfully, my disease modifying drug is a simple pill along with other medications to help manage my symptoms.

I also try to discuss my physical limitations with them in age appropriate ways.  Sometimes I really have to humble myself to tell them why I might not be able to do something.  For instance, I might tell them that I can’t play outside with them because it’s too hot but when they come back inside we’ll do a game, etc.

What I don’t do is use big medical words that may sound scary.  Unless they ask, we don’t talk about what might happen in the future with my MS.  We don’t discuss whether someone might find a cure soon.  There will be a time and a place for those big conversations.  It’s just not at 8 and 5 years old.

Be active when and how you can

I’m probably never going to be able to run a 5K with the kids.  I probably won’t backpack through a national park with them (although let’s be honest- I’m not doing that without MS either).  What I can do is serve the runners at their school’s 5k or enjoy vacations and road trips along side them.  I can go on walks through the woods or jump in on a backyard game of baseball or soccer on a cool day.  It just takes a little more intentionality and creativity.

My 5 year old told me the other day that I was really “good at being an inside mommy”.  I won’t lie- that stung.  Then I realized that she didn’t mean for it to hurt- it was a compliment.  She then went on to tell me all the things she likes doing with me.  They were all activities that weren’t limited by my MS and in only a way a 5 year old can, she was speaking some serious truth to me in that moment.

While in many ways MS has limited me, I believe it has helped teach my girls to show empathy to those with limitations.  They’re quick to pick up things off the floor, open doors for a stranger, or just realize that we’re all created with a different set of skills and physical abilities.  Hopefully, they’ll look back as adults and realize that there were lessons they learned from seeing both the effects to my MS but also learn from how I deal with it.  Which encourages me on a daily basis to be both tough and gentle with my abilities, give and accept grace, and live the life God’s given me to His glory.

And if one of them wanted to grow up and become the neurologist that cures multiple sclerosis…..Well, that’d be great too. 🙂

 

 

The MS Chronicles: Seeing Work as a Blessing

I’ve been teaching special education for 15 years.  That’s 15 first days of school, 15 Christmas vacations, and 14 last days of school (I’m SO ready for #15!).  I’ve taught countless kids at 7 different elementary, middle, and high schools.  99.9% of the time I love it.
My mom chaperoned so many field trips back in my middle school teaching days!
 There’s never a dull minute in special education.  It’s full of ups and downs and everything in between.  But this post isn’t about the warm and fuzzy of teaching.  When the dust settles, this is also my job.  It helps put clothes on our backs and food on our table.  It keeps the lights on and the water running.
And I learned a long time ago to not take work for granted.

Merriam-Webster defines “work” as:

 to perform work or fulfill duties regularly for wages or salary 

to perform or carry through a task requiring sustained effort or continuous repeated operations 

OR

 to exert oneself physically or mentally especially in sustained effort for a purpose or under compulsion or necessity.

Years ago, when I was in the middle of the diagnosis process, so much was unknown.  Surprisingly though I didn’t think much about work or a job.  I wasn’t married so I was worried about marriage, babies, and whether I’d walk or roll in a wheelchair down the aisle.  My future as a teacher didn’t really cross my mind.  In hindsight, that’s probably a blessing since that might have been what sent me straight over the crazy hill.
A trip to Nashville right after a hospitalization for “probable MS”. My official diagnosis followed a week later.
In a few short weeks, I’ll be TEN years post diagnosis.  I think about my work often these days.  That definition of work has several words that are a huge struggle for me on a regular basis- exert, sustained, effort…
Which always causes me to wonder…
Will I be able to retire from this? 
Is disability in my future? 
Will I have to change jobs in order to salvage what I have left of my physical strength? 
These are big, scary questions for me and I try to not dwell on them too much.  I have come to see work as a blessing though.  A blessing I have right now and one I don’t want to take for granted.  Many of my friends with chronic illness aren’t able to work and I realize that I may not always be able to either.  When I choose to see my current ability to teach as a blessing, my whole perspective changes.
Storybook character day at one of my elementary schools I worked at.
Right now, I have the chance to bless others right where I am.  Hopefully, I can inspire someone else to keep pushing when it’s hard and to not take the skills you have for granted.  Work keeps my mind sharp and forces me to keep on my feet as much as I can.  Teaching keeps me engaged with people and kids who have an innate inability to keep you laughing!
I’m not sure what the next ten or fifteen years hold.  I do know, however, that I can teach RIGHT NOW and God is in control of it all.  That now matter what the next months or years hold for my physical status, I can make a difference right where I am.
Career Day with Bennie Cunningham. 🙂

The MS Chronicles: When Taking It Easy Isn’t an Option

It’s been pretty quiet (well…..actually silent) over here at the blog for the past week or so.   Last Monday, my oldest daughter got the flu and my younger one got some kind of respiratory infection and a REALLY impressive case of pinkeye.  On Tuesday, I got sick.  Bless my sweet husband who babysat all three of us and for some understanding principals and teachers since we were all pretty much home for most of the week.

And then on Saturday…..

MY BABY SISTER GOT MARRIED!

Melissa got engaged back in the fall to a surgical resident at a local hospital who is originally from Cairo, Egypt.  They had a beautiful Coptic Christian Orthodox wedding on Saturday afternoon.  Thankfully, we had all recovered (for the most part) from the flu and our other various ailments.

As I was resting on Sunday (i.e. while I stayed on the couch or bed ALL DAY LONG), I thought about how my multiple sclerosis had dictated so much of my week.

95% of the time I’ll take it easy before participating in a stressful or demanding activity, I’ll figure out a way to change or modify it for me, or I’ll just not participate.

Well, sometimes there are things in life that just aren’t optional. 

My sister’s wedding is a once in a lifetime event.  I was the matron of honor and mother to the two most excited flower girls on the planet.  This was big.

But I also recognized that I’d have to work in time to recover because I knew it’d be a long couple of days.

What I wasn’t counting on was everyone in my house getting sick the week before.

The truth is that sometimes you just need to push through the pain and fatigue.

And this past week has been one of those times.  But now it’s Monday afternoon and with the exception of losing my voice and being a fairly tired, I’m back at work and good to go.

So how did that happen?

1. I had a plan.  

Before everybody got sick, I knew that the wedding weekend would be long and tiring.  I’ve had MS for ten years.  The fatigue and pain after overdoing it rarely comes as a surprise anymore.

Weeks before the wedding, I had found a replacement for my Sunday morning responsibilities at church and had planned on going to a later service.  When everyone got sick and then the wedding events started, I realized I wouldn’t be able to attend church at all and made the necessary arrangements.  Had I not had a plan in place and anticipated what problems I would experience after a busy weekend, I would have been caught by surprise and it would have made everything much worse for not only me but also my husband, kids, and the people who depend on me in church.

2. I made sure I made good use of my primary care doctor.

Within a few hours of taking my kids to the pediatrician, I used my doctor’s office online system to send an email to my nurse practitioner.  I told her the symptoms I was beginning to have as well as letting her know that one of my kids had the flu and the other was also ill.  I am immune suppressed  due to my medication so I knew getting the flu would NOT be a good situation and potentially dangerous.  She started me on a preventative course of Tamiflu and let me know what symptoms to watch out for and when to get back in touch with her.  I also made sure to take my over the counter medication regularly and not get behind on fever or pain medication. And I’ll be 100% honest and say that I am NOT a good medication-taker- the fact that I even took the OTC medicine is a credit to my husband.  Also of note- he makes a really good cup of hot tea with honey. 🙂

3.  I had help. 

My husband is a trooper.  He jumped right in and handled so much of the caretaking tasks on the days I was sick as well as the recovery time.  I had a sweet friend who sent over some food and both of our parents helped us out.  We also ordered a fair amount of takeout and cooked whatever was most convenient.  (Hello Chick Fil A!)

Ya’ll…this flu. It’s not pretty.

4. I knew the fatigue and pain would only be temporary.

After 5 days of having sick kids and being sick myself, I was exhausted.  Wedding events on Friday and Saturday, while fun, were also exhausting.  But I still had an amazing time and enjoyed every minute of my only sibling’s wedding. I had a plan in place to recover so I was able to push through and really enjoy myself instead of worrying about what I was going to do the next day.

Normally, if someone asked me how to avoid the consequences of overdoing it with multiple sclerosis I’d tell them to “just say no”.  Avoid the situation that causes the fatigue, do the minimum, or find ways to modify the activity.

But life doesn’t always work that way.  Sometimes we just have to push through.  Sometimes we jump into the situation that’s going above what we can comfortably do.  In those moments, we realize the consequences and plan for them instead of running away.  Let the laundry and the cooking go and enjoy the things in life that are most important.  Like snuggling a sick kid or celebrating your sister’s wedding.   Those are things you’ll never regret!

The MS Chronicles: A Letter to My Pre-Diagnosis Self

Dear 25 year old Heidi,

Welcome to what will be the greatest and hardest year of your life.  You’ve just lost your grandmother and your dad’s death followed a week later.  I know you’re taking life one step at a time but yet still feeling like you’re barely making it.  On top of that, you’re dating this great guy but not sure how all that’s going to work out if your brand new neurologist doesn’t figure out what’s wrong with your brain.

Hiking at a state park in Georgia. I’m still not sure how I walked all those steps but I did!

I know it all started years ago with trouble walking.  This mysterious set of symptoms have come and gone for years but now they’re coming but not going.  You’ve finally found a neurologist who seems like he’s not going to give up on you and you’re hopeful that maybe this is the one.  The doctor who won’t think you’re crazy but that there’s actually something causing your numbness, pain, and trouble walking.

And he will.  He will figure it out.  He’ll do  MRI’s and spinal taps and he’ll come back with those two words you’ve heard for years- multiple sclerosis.  Your diagnosis will come six weeks after your wedding.  You and the new husband will learn all about auto injectors, disease modifying drugs, and the awful noise that the Rebif injector makes when you use it.  It won’t be easy.  But it won’t be the death sentence you imagined.

You’ll keep walking.  And falling. Even once you’ll fall head first into a clothes hamper.  But you’ll keep getting up.

Eventually, you’ll get through two pregnancies and while you’re busy growing those babies, the FDA will approve the first oral medications to treat multiple sclerosis.  The day you take that first pill instead of an injection, you’ll feel like you’ve won the MS lottery.

My first Walk MS event

Bad days will still come and they’ll be times where you’ll feel like they’re all bad days and no good ones.  You’ll battle fatigue, memory issues, and the intense South Carolina heat in August.

But you’ll keep putting one foot in front of the other.  And remembering that God’s grace is sufficient. Just like it was yesterday, it will be enough for tomorrow.

Wedding photo cred:  Jacob Dean Photography

The MS Chronicles: Cognitive Issues and Multiple Sclerosis

When I was diagnosed with multiple sclerosis ten years ago, my worst fear was not being able to walk.  I imagined a life of mobility issues, walking canes, and wheelchairs.

The starting line for my first ever Walk MS event

I never expected having to avoid hot summer day or ration my energy to make it through a day. To the pre-diagnosis me, multiple sclerosis was completely a gross motor issue.  Over the years I’ve learned that’s far from real life with this disease.   I’ve learned that if you talk to five people with MS, they’ll have five completely different stories and sets of symptoms. Thankfully, my MS is mild at this point and the chances are high that I’ll continue to live a full and reasonably active life,  for which I’m immensely grateful for.  Even in the past ten years, treatments for MS have become much better and I’m optimistic that will continue.

The symptoms of MS I didn’t expect to deal with were the cognitive impairments that come along with it.   On a daily basis I battle symptoms like forgetfulness, difficulty finding my words when speaking, and my processing speed. I’m a natural planner with very strong Type A personality tendencies.  Those personality traits have been useful as I navigate the cognitive issues that have come along with my disease. 

The good news is that over the years I’ve also developed a couple of strategies that allow me to function both at work and at home without too many issues.

Strategy 1:  WRITE it DOWN!  

There is no way I could live without writing things down.  I need reminders for even the most automated tasks.  (Yet another reason for me to use my bullet journal!)  I write to-do lists for home and work along with making digital and written reminders for phone calls I need to make, emails I need to send, or even questions I need to ask my husband when he gets home.

Crossing the finish line at my first Walk MS with my daughter and husband- a moment I won’t ever forget!

Strategy 2: Give yourself wait time

As a teacher, “wait time” is an important task when we ask a student a question.  Basically, it’s the idea that we don’t demand a response from a student immediately but give them time to process.

It’s also something I have to give myself, especially when someone asks ME a question.  For example, let’s say my husband asks me what time we need to leave to get to a certain event or a student asks me a question about a reading passage.  While that sounds like a simple question to answer (and I probably know the answer), many times my brain simply will not have the words to answer immediately.  It seems like forever but if I simply stop, look at him in the face (or even close my eyes for a second) and process what he’s asking me I can formulate a accurate answer.  Many times those cognitive issues become worse when I get overwhelmed or overstimulated so whatever I can do to calm myself and not get frustrated is always helpful.

Strategy 3:  Give grace (to yourself and those around you)

My forgetfulness is frustrating to me.  It’s also frustrating to those around me.  Give yourself grace when you might use the wrong words and embarrass yourself.  Give grace to those who may get annoyed with you when you do forget something or can’t remember their name. It’s going to happen.  But tomorrow will be a new day.  And new days should always be celebrated!

The MS Chronicles: Living Well with a Chronic Illness

I’m writing this as I sit in the waiting room at my neurologist’s office. It’s a familiar place even though it’s far from the first neurologist I’ve seen. Sitting around me are the usual suspects- the elderly stroke victim being cared for by her adult child, the Parkinson’s patient, or the new patient with chronic pain or migraines who is in obvious misery while filling out mountains of paperwork.

I was diagnosed with multiple sclerosis ten years ago. It was a long and drawn out process of MRIs and so.many.doctors. It’s a story I may write someday but I feel that so many things have changed from those first weeks and years of battling this invisible illness that in many ways it’s hardly the same disease.

As someone who thrives on predictable routines and structure, multiple sclerosis has been quite the curve ball. In other ways, my type A personality has been a huge benefit in my battle against MS. The longer I travel down this road of chronic illness, the more I realize there are some strategies that you can use to maintain your sanity and keep your life together even when you health is struggling.

1. Ask and accept help

I have control issues.  There.  I said it.  Serious control issues.

It’s not that I mind if someone helps me with my laundry or loads the dishwasher for me.  I’m fine with it as long as they do it the right way.  (Which is course is my way).  Obviously, I realize this is a problem for me and it’s one that still requires that I make very conscious efforts to ask for help.  Life was not meant to be lived alone.  We’re created to live and do life together in a community.  So whether it’s a spouse, your church small group, or your extended family, ask and accept their help graciously.  99% of the time when someone offers help, they’re being genuine and are more than willing to provide what you need.

2. Determine your bare minimum.

I have this bad habit of jumping in over my head when it comes to household tasks.  Of thinking that I absolutely HAVE to do ALL THE THINGS right at that very minute.  The result of that is always the same for me- fatigue, pain, and all those other fun things that MS throws at me when I over do it.

The solution to this for me has been to determine my “bare minimum”- or identifying the least amount of a certain task that needs to be completed.  For example, we just got back from vacation and my laundry piles are insane.  I’m usually a weekend laundry person but this week I’m doing the bare minimum amount of laundry each day to get through.  Trying to tackle all this laundry at one time and start back teaching after break would have been a recipe for disaster.  So far, no one has had to go without clothes and I’ll get them all washed eventually.  Next week I’ll be back to my regular routine but for right now I’m choosing the bare minimum with my laundry.

3. Use routines and schedules to keep things together- even when you’re not.

My girls are 5 and 7 and I’m always amazed at what they’re actually capable of doing.  I wholeheartedly believe that routines and schedules are good for kids anyway but they’re also a huge weight off my shoulder when it comes to the physical demands of running our home.  Routines for getting ready in the morning, cleaning up after mealtime, etc are integral to my sanity and allowing things to keep chugging along even when I don’t feel like it.  And for heaven’t sake, USE YOUR FREEZER!  Even my 7 year old could read the freezer instructions on a casserole if I needed her to.

Don’t get me wrong- these are all parts of my life that are a constant struggle for me.  No one I know would describe me as laid back and easy going.  But sometimes, just sometimes, my Type A personality comes through for me.  And whether you battle multiple sclerosis or just the day to day fatigue of parenting, hopefully these strategies are helpful.

Comment below with your ideas and strategies for keeping it together during tough times!