Managing the Daily Demands of Life as an NMO Patient

Living with NMO from day to day requires rest, patience, and medical guidance

Jennifer van Amerom avatar

by Jennifer van Amerom |

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There are so many things I still want to do in life. I never stop. Perhaps it’s because I feel that I’m up against a clock. I constantly wonder how long it will be until my neuromyelitis optica (NMO) takes over and I am further limited in energy and ability.

If you’re a patient like me, you might feel the same way. Every day becomes like a race, and it’s easy to feel overwhelmed.

My average week

My 10-year-old daughter, Sophie, and our homestay teenager, Sydney, who is almost 16 and has become like a daughter to me, have demanding dance schedules — approximately 25 hours a week for Sophie and almost 40 hours for Sydney. Plus, they must keep up with their academic studies.

Having them train so rigorously means nutrition is paramount in our home, which helps to keep me on track with my own needs. It also means meal planning, shopping twice a week for fresh produce, daily home-cooked meals, and balancing everyone’s likes and dislikes.

I also work full time, and often more than that. As an entrepreneur, I am the only one responsible for my income. There’s an extra level of stress when you don’t have a salary to depend on, but I’ve always preferred to rely solely on myself. I do worry about my next NMO attack and whether it will prevent me from working, which affects my family’s finances.

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Then there’s the business of being a patient. Did I remember to refill my prescriptions on time this month? How long will my next Enspryng (satralizumab) injection affect me, making me feel sluggish and requiring extra sleep? When will my fatigue syndrome strike next? What medical appointments and tests do I have this week?

I also try to jam in time with family, such as a visit with my sister and time with my husband. If I’m lucky, I’ll get to see a friend or two. I do my best to stay active, although I’m often unsuccessful.

Needing change

A few years ago, I started suffering from epic panic attacks. I didn’t recognize what they were at first. Suddenly, I would feel like I couldn’t breathe, so I’d hide in the bathroom. A few times, I felt like I was going to pass out due to a lack of oxygen.

The attacks started happening more frequently, especially late at night, when I felt like I hadn’t accomplished everything on my to-do list. I still had clients to follow up with, our home needed tidying, I needed a shower, and my NMO exhaustion had already kicked in. I’d look at the clock, usually around 1 a.m., and wish there were more hours in the day. Plus, tomorrow always started promptly at 6:30 a.m.

When I finally found the courage to admit that I had too much on my plate, my family doctor wasn’t surprised. He had waited years for me to reach this point, and knew exactly which psychiatrist I should talk to.

Cognitive behavioral therapy

Cognitive behavioral therapy, or CBT, emphasizes finding solutions and tackling problems in manageable bite sizes. In many ways, CBT teaches patients how to become their own therapists. While the situations don’t change, how I approach them does.

Working with my psychiatrist, I developed coping skills. I learned how to change my own problematic thinking, emotions, and behavior.

I wasn’t aware that there are psychiatrists who work solely with rare disease patients. The pressures we face are unlike others; we can’t change our diagnoses or our bodies, so we must address the many emotions we experience. My doctor sent me to another hospital with a more robust psychiatry ward, providing me with individual care and the option to join a CBT group training session.

Ways to find stillness

CBT changed my life, although it’s a practice I must keep returning to. Like everything else, it results in small, incremental behavioral changes that have the greatest overall impact.

I find balance in other simple ways, too. When my body has had enough, I’ll stop and have a cup of tea. I’ll remind myself that a particular problem is usually temporary.

I’m also a big fan of distracting apps. Meditation will never be my forte, but sometimes I’ll try the Calm app. If I’m not in the mood, I’ll practice JavaScript coding on the Grasshopper app or improve my Spanish on the Duolingo app.

My dog, Magnus, is a great distraction. He needs several walks a day, which my husband usually does, but I’ll try to do at least one a day. It only takes 15 minutes to walk around the block, but I can listen to a podcast or music, or catch up with a friend over a call.

How do you manage your day as an NMO patient or caregiver? Please share in the comments below. 

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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