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Erase MS

News from July 2014

When Other Parents Think You're Lazy - A Guest Blog

July 20, 2014

By Christine Brovelli O’Brien

Do you ever just want to scream out to the world, “I have MS! Give me a break! I may look fine, but guess what – I’m not!”

Multiple sclerosis is referred to as an “invisible disease” with good reason: Many MSers appear “normal” (whatever that may be) and healthy to the untrained eye, when in fact we are coping with various health issues and other obstacles.

And no one knows until you tell them.

As I mentioned in my first blog post for Race to Erase, “Trusting Your Instincts,” I did not share the news of my illness with some friends and neighbors, people whom I spend time with on a daily basis, until a year after my diagnosis.

I kept the news hidden because I didn’t want anyone to treat me differently. But since I’ve opened up about having MS, everyone has been so amazing that I wish I had shared the information with them sooner!

They treat me as me, but they are mindful that I have some limitations. Seemingly minor gestures, such as giving me the patio chair that doesn’t face the sun, mean the world to me.

What I’ve discovered, however, is that it’s not so easy to navigate the world of parenting when I am out and about with my three-year-old daughter, surrounded by moms whom I don’t know very well.

That’s when the urge to shout comes up.

First of all, I should tell you that I have optic neuritis in my left eye, which has healed fairly well, and I also deal with sometimes crippling fatigue, but for the most part, I’m ok. Once in a while, I’ll have issues with numbness in my arms or legs, but nothing that is outwardly noticeable.

If you look closely, though, you’ll see that sometimes I don’t walk in a straight line, especially when I’ve been moving around for a while. Or, I may not seem “focused” because when I become overwhelmed or stressed out, my thoughts become really scattered.

This why I choose child-related activities for my daughter and I which don’t demand a lot of exertion. As I wrote in my recent post, “Toddlers and Fatigue Don’t Always Play Nice Together,” it’s not always easy to deal with a little kiddo under normal circumstances, let alone when you have MS!

Story time at the library, for instance, is one our favorite activities. My daughter and I both are bookworms, and the book-related crafts that we do every week are a lot of fun. But there are times when I just can’t sit cross-legged on the floor with her in my lap, and I have to rearrange my legs. Or, I can’t (gracefully) stand up from a sitting position on the reading rug.

Just the other day, my daughter tried to stand on my leg, putting all of her weight onto it. I had to remove her and explain quietly that she can’t stand on my leg because I’m not strong enough. Another mom saw me take my girl off my leg and gave me a funny look; because she didn’t hear my explanation, this mom probably assumed that I am lazy and don’t want to play with my kid.

That’s when I want to yell, “I have MS! I want to goof around with my daughter, but I can’t always do it!”

I’ve experienced similar moments at the park, too, when I’m unable to chase after my daughter because she’s simply too fast. In some people’s eyes, I appear lazy, especially when I sit down and call out to my husband, “There she goes! Catch her!”

Despite appearances, I’m not leisurely lounging under a shade tree while ordering my husband around, even though that’s exactly what it looks like. I’m tired. I’m overheated. My legs simply can’t take me as fast as I want to go.

I’m sure other MSers have experienced similar situations, and I’m curious about how others handle it. So far, no one has said anything to me about it, but the judgmental looks get to me. For now, I just take a deep breath and remind myself that perhaps they, too, are dealing with something “invisible.”

And then I move on!

Christine Brovelli-O’Brien is a writer, mother, former English professor, and MSer. Her work also appears regularly on the What to Expect When You’re Expecting Word of Mom blog. Follow her on Twitter: @brovelliobrien

Toddlers and Fatigue Don’t Always Play Nice Together - A Guest Blog

July 2, 2014

By Christine Brovelli O’Brien
When I was diagnosed with relapsing-remitting multiple sclerosis in April 2012, my daughter, was not yet two years old.

During the time of my flare-up that spring (see my recent guest blog post for more details about that crazy time), when I also was teaching full-time, I spent most of my time chasing after an exuberant little kiddo who was quickly on her way to becoming a full-blown toddler.

Before I gave birth to my one and only child three years ago, family and friends warned me about the amount of energy and strength it takes to care for a young child. I waved away their concerns, saying I could deal with it.

What I didn’t count on was being diagnosed with MS and then starting a treatment that causes even more fatigue.

I’d had my share of sleepless nights and exhausted days, especially after becoming a mom, but nothing prepared me for the fatigue that accompanies MS – not even those times in college when I’d stay up all night and still attend class, bleary-eyed and unfocused.

Many MSers have described the extreme fatigue as being weighted down by cement, and it’s a very accurate depiction. Just this afternoon, as I struggled with the heat and humidity of summer in the Midwest, I told my husband that it feels as if I’m being pushed top-down by a concrete block.

And now that I’m no longer working outside the home, I have to be “on” all day with our daughter, which is especially difficult now that she no longer takes naps (I’ve been blessed with a child who sleeps late in the morning, so at least that makes up for the no-nap long days!)

And saying “Mommy is tired” to a three-year-old doesn’t work so well, which means that most days, I don’t get the rest that I need. For the typical toddler, “Mommy is tired” translates as “Mommy can read six books to me” because it doesn’t take much energy to read a book, right?

Except it does, sometimes.

Most days, I do have enough energy to run around with our little gal. She’s a very active, outdoorsy kid, and we both need our exercise. My mobility has not been hindered by RRMS, so we take walks, play outside, go shopping, or just hang out in the driveway, blowing bubbles or drawing pictures with sidewalk chalk, both of which are clever ways to sneak in some sitting time.

But when fatigue does strike, I do what I can to get through the day. Yesterday, for example, we built a “cave” out of pillows that doubled as a sleeping tent for me. We also do quiet crafts that allow us to sit, such as coloring, painting with water, and sticker books.

On the days when the fatigue is just too much to bear, I’ll let her play some computer games or watch an hour (maybe two) of TV, something to keep her occupied while I sit on the couch next to her.

Or, I’ll call in the reinforcements: My parents, who live nearby, will take my daughter for the afternoon. And when my husband gets home from work, he usually takes over the dinner and childcare duties, which gives me some chillin’ out time.

Although it’s not ideal to try to explain to a toddler why mommy or daddy needs to rest so often, it’s not such a bad thing to slow life down a little bit, especially during these warm summer months. Whether you have MS or not, parenthood doesn’t have to be “go, go, go” all the time.

Arm yourself with some pillows, a few books, and the TV remote, and you’re good to go!

Christine Brovelli-O’Brien is a writer, mother, former English professor, and MSer. Her work also appears regularly on the What to Expect When You’re Expecting Word of Mom blog. Follow her on Twitter: @brovelliobrien

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