Patients

5 Things an MS Patient Would Tell Someone Recently Diagnosed

The following is a guest post from Bethany, an MS patient.

When I was diagnosed with multiple sclerosis in 2013, my family, friends and I were confronted with countless questions, fears and concerns. It’s interesting to think about how many subjects in our lives elude us until we are forced to learn about them. Some of us continue to be blissfully unaware, while others have a need to know more. I just happen to be one of those people who cannot accept the status quo.

Living with MS has opened my eyes to some commonplace practices and attitudes when it comes to MS patient care. Being mindful of how you deserve to be treated by others—as well as how you treat yourself—will help you live a happier life with MS, just as it has helped me.

I realized that no one knows how to live with MS better than a person living with MS, and that there are five basic principles every person—especially newly diagnosed people—should know.

1. Sleep, sleep, sleep!

While our modern way of life may not facilitate “sleeping in” every single morning, we still often deprive ourselves of the basic rest we need.

Listen to your body. If you are tired, rest.

Our bodies get a lot of healing work done while we sleep, so schedule your weeks with enough time to sleep as much as possible. Take naps if you can.

Since I’m no longer able to work, I have a planned nap each afternoon. Because it’s scheduled, I don’t feel like I’m losing any of the day. I plan my bedtime, as well, so I am sure I will get at least nine hours of sleep at night. If you work during the week, perhaps plan a nap every Sunday, and go to bed at a regularly scheduled time each night.

Also, don’t forget to talk to your neurologist and regular doctor about your fatigue and sleep patterns. Just because you may have read that something is “normal for MS,” doesn’t mean you shouldn’t start a conversation about it with your doctor.

Bethany with her daughter, Blythe

Bethany with her daughter, Blithe

2. Exercise, but not too much.

Before my MS symptoms began, I never had any physical limitations. If I wanted to jump, run or push myself, I just did it. I regularly practiced yoga. I had never been a “fitness buff,” but when I begrudgingly tried yoga for the first time, I was amazed how good I felt all over. It became my main outlet for exercise.

When I swiftly lost the feeling in my feet, legs, and hips—and subsequently lost mobility over the short period of a week—the last thing on my mind was exercise. I wanted to be told that everything would just go back to normal. Unfortunately, I wasn’t given that comfort. In fact, I wasn’t given a single expectation. I was sitting in front of the neurologist with no reassurance I would walk again, much less run or jump.

Doing yoga now seemed like a preposterous idea. So, when one of my former neurologists demanded that I do yoga for 30 minutes every day (that’s more than I used to), I cried. I told her it was just not possible, since I had so much pain in my toes and I didn’t have the balance that I used to (not to mention the fact that I was using a walker at the time). The neurologist responded by scolding me through my tears. I believe she meant well, but I was, and still am, delicate to handle when it comes to talking about my MS. I felt as if I would be some sort of failure if I couldn’t push myself physically.

It took me some time, admittedly, to realize that I get to decide my limits. The key is to move every day. Don’t let someone else bully you into exhausting yourself.

Your body is fighting a battle; be kind to it. Give yourself enough movement so that you can be relieved of pain and stiffness. If you have the energy and desire to do more, go ahead! But stay within the limits that you inherently know for yourself.

I never knew that simply walking could give me such satisfaction. Once I took the pressure off of myself to work out like I had before my onset, I started feeling the peace of mind I have today.

Photo taken by Bethany

Photo taken by Bethany

3. Don’t let anyone bully you.

This is the most important piece of advice I would have given myself in the hospital bed two years ago when I was being diagnosed with MS. Think about all of the hardships of your disease that you deal with every single day. You deserve the utmost respect and empathy from your medical professional. This is a journey they should be on with you, at your coattails—not pushing you, pulling you or nowhere to be found.

There is another doctor out there waiting to be fortunate enough to care for you. And you might just wonder why you didn’t make a change sooner.

My experience was unique, as each individual’s experience will be, and there are many amazing medical professionals whose only goal is your best health. I took control by finding a new doctor and neurologist, and now I find myself actually looking forward to my appointments. I have my own personalized team for all areas of support. Assemble your team, and keep them informed!

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4. Confront your diet.

This is good advice for any human being, of course, but it is especially important for people with MS to balance and moderate what we put into our bodies. If you haven’t already, have your doctor check all of your vitamin levels and run full panels on your blood. Then, discuss the findings.

I discovered I had a vitamin D deficiency that was completely unaddressed before I took control of my health. Supplementing your MS treatment with vitamins is easy, and could make a big difference in how you feel and function. It may be that you are not eating enough of the right foods—or eating too much of the wrong foods—to keep your body (particularly your immune system) functioning at its best. And everyone knows that consuming too much fat and sugar can take a devastating toll on our bodies.

By knowing exactly what your vitamin and blood levels are and keeping the conversation flowing with your doctors, you can personalize your diet to help your body work at its best.

 

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5. Be grateful.

It may sound a bit cliché, but having an attitude of gratitude will change your life. I wake up grateful for my MS every morning.

When I go to bed at night, I think of Bing Crosby and Rosemary Clooney reminding me in song to “count my blessings instead of sheep.” Having a negative attitude is easy for a lot of people today, but our attitude is always a choice. Even through pain, you can actively and consciously decide to be positive.

Some folks think about how much “worse” things could be, which is fine for some people. But I personally think that’s going in the wrong direction. MS has helped me make an impact on people that I wasn’t able to make before.

I can start each morning knowing that this could be a day that I talk to someone who is afraid, and maybe help them gain the perspective they need to conquer their fear. Maybe I’ll speak with someone who has preconceived notions of MS and help them put a face to the disease. Maybe I can help them realize that MS can happen to anyone, and that we are all people who deserve to have our stories told.

Without MS, I wouldn’t have known about the wonderful community of vibrant people living with MS and the people who care for them. Not to mention the brilliant minds and hearts of scientists and researchers who are striving to find a cure.

There is always something to be grateful for in this amazing experience we’re all having together. Remember, you’re never alone in your journey.

Bethany and her daughter, Blythe

Bethany and her daughter, Blithe

 

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.

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