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Catherine

Nurse Catherine Asks...

I love hearing that my relapsing multiple sclerosis (MS) patients are staying active, but I want to make sure they are listening to their bodies to stay safe as they do all the wonderful things they do. Do you push too hard when it’s time to take it easy? What workarounds do you have to deal with bad days?

Stewart Answers...

Disease and disability progression—knowing your limits

September 24, 2018

I spent most of my life pushing limits and I have the scars to show for it. Growing up, I was “that” kid—pushing boundaries, being a daredevil, and never letting any obstacle get in the way of what I wanted. Unfortunately, some of those obstacles were physically painful, resulting in most of the staff at our local emergency room knowing me by name.

Initially, my relapsing MS diagnosis didn’t change my outlook on life or the goals I wanted to accomplish. I was already used to finding workarounds on the days I wasn’t feeling my best for the last 10 years. To me, the only difference was that now these things had a name: relapsing MS symptoms. It wasn’t until I experienced two specific neurological events that I finally woke up. One was a neuropsychological assessment that explained some of the symptoms I was experiencing. The other was a hospital stay for an “acute relapsing MS flare” that I didn’t even know I was having.

For most people, pushing limits is a good thing, but for me, pushing the limitations comes at a higher cost. The relapsing MS symptoms that can occur when I push too hard can have a negative effect on me. As with many other people living with relapsing MS, heat and physical fatigue can also trigger my symptoms. As a result, at times trying to balance can be very challenging and my attempts to walk can get ugly.

Throughout the years I've learned to recognize and respect my limits.

I read that wisdom often comes from mistakes. A couple of years ago, I decided to hike a mountain trail in Virginia. I thought I was being safe because I made sure to bring my cell phone. Unfortunately, I didn’t have reception while I was on the trail. I reached my destination safely and easily, then turned around and headed back towards the car. As the sun was going down, I began experiencing a lot of difficulty walking. Even though I was able to make it back to the car, I promised myself in that moment that I would always take the proper safety precautions in the future and that I’d always plan ahead whenever venturing out. I also learned to check my ego at the door and not go off on my own without sharing where I was going.

It’s good to know limitations and push them, but it’s better to be aware of the line and refrain from crossing it. You learn to improvise. For example, I have a goal to take 10,000 steps a day, and if it’s too hot out, or my balance feels off, I walk around my home to reach my goal, rather than overdoing it.

I’ve found that journaling has also helped me stay in tune with my body. This way I can keep track of things like what I was doing when I experienced a symptom, or look back on how I felt when I pushed my limit that day. This helps me to identify triggers, and I can work on new ways to avoid those kinds of things in the future. And as far as pushing limits, I must be doing OK because, as of now, it has been more than 800 days since I put my cane down!

See What Connie Says
Connie Answers...

Disease and disability progression—knowing your limits

Over time I have learned that in order to keep living my life the way I want to, sometimes I just have to take a break when I need it.

Despite knowing what’s best, I can still be my own worst enemy. I have ignored the signals from my body in the past and carried on without listening to the warnings. This only leads to me feeling worse and taking longer to recover. Over time I have learned that in order to keep living my life the way I want to, sometimes I just have to take a break when I need it.

I continually monitor the impact of this disease on my body as a whole, to understand whether what I’m feeling is because of disease progression or regular aging. This is not an easy task, but I’ve learned to talk to other people and be open about this. For things like cognitive function and energy levels, I talk with people my age that don’t have MS to get a better understanding of what’s normal for my age. If they say they’re facing the same issues as I am, I can probably chalk some things up to getting older.

Of course, you should also talk with your neurologist about whatever symptoms you are noticing, so they can decide if this may be MS or another issue and treat it accordingly. Keeping a log of any new or worsening symptoms has helped me see the bigger picture and manage my relapsing MS better. I keep a running list in my phone because it’s something I carry with me on a regular basis, and I can take it with me on the days when I see my neurologist. I’ve noticed patterns in my notes that show when I have pushed my limits, and how that affects my body. I like to think that my limits won’t change over time as long as I’m treating relapsing MS as effectively as possible.

My tip to anyone trying to figure out their personal limits is to listen to what your body tells you. Write it down, look for patterns, and take a break when you need it! It’s also important to communicate the changes you are seeing in your mind and body with your neurologist. These changes are good benchmarks to review when you’re discussing whether your current relapsing MS treatment is the best one for you with your neurologist.

See What Stewart Says
Catherine

Nurse Catherine Sums It Up

It’s healthy to keep moving and it’s great to be motivated to accomplish your goals and stay active, but make sure you’re taking care of you! Give your body the down time it needs. It’s important to be mindful of your limits, so you can reach your goals safely. If you notice any changes in your limits or abilities, bring them up when you see your healthcare provider. I tell my patients to keep a list or ask their family or friends if they’ve noticed any changes. Sometimes they can see things better from their perspective. And you may also find this symptom tracker helpful to keep a record of any changes going on with your body. 

How do you measure your personal limits? Is there something special you do to work around on days that are a little more challenging than others? Share it in the comment section below!

Continue the Conversation

LOUIS MONTANEZ

Wow!,I can definitely identify with that. Im OCD too. And only on the cleaning. I've gone as far as waiting till my wife finishes the kitchen and i'd go behind her and,according to mua, clean it better; or maybe just different. My MS symptoms are basically limited to my balance and walking. But it's REALLY bad. So much so that i've opted to use a motorized wheelchair. I've actually fallen so many time, because of my balace, or lack of it, that i began thinking seriously of my safety. Oh well..... I think it's time to talk to my healthcare provider about changing my MS treatments.

It's important to discuss treatments with your doctor, Louis. If you're looking for support, MS One to One offers personalized support, where you can talk directly to an MS One to One Nurse. To register, visit https://www.msonetoone.com/sign-up, or you can call 1-855-MSOne2One (1-855-676-6326). We hope this helps. Please let us know if there is anything else we can do.

Paula Mieczkowski

Hi folks, New here, seeing "push limits" really had to laugh. Always being the type to do this MS hasn't stopped this need. Although older now I still get this obsessive urge to push the envelope . Around every ten days or so I'll be in the kitchen cleaning up, my regular routine everything smooth. Then it hits me...... I get this rush of energy like a 20 yr. old.lol I start this compulsive cleaning binge. I'm mad when doing this. Really angry. No one person. Guess myself. Use to be able to keep everything spotless. Mad as hell because I can't do it anymore! Really the only thing that MS has taken from me that I really miss. Yea I'm OCD!lol. Only cleaning though. I do have a cleaning lady. She's fabulous! Spotless! Not good enough for me though! No I have to be dumb about it... Actually look for things that I could or would have done better or just differently. Talk about pushing your limits... I'll work till I drop! Being so tired I'll actually fall asleep.

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