Moving forward

My journey with Myositis and how I learn that progress isn't a straight line. Progress is where you have to keep trying and adapting.3 min


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People in their 20’s don’t usually have to think much about their health, aside from exercising and staying in shape. At least that’s what I thought until I began to struggle climbing up stairs.

I started experiencing fatigue and muscle weakness in 2019. July and August of that year were the most difficult months for me. I never took my good health for granted, but I did underestimate the importance of my physical abilities, such as the ability to get up from the bed, climb stairs, and to run. I never knew how quickly life can take things away from us.

As the year went on, I lost the ability to bend, climb stairs, reach for things, and run. Eventually my health declined to the point where I was fatigued just from walking from my house to my car. And the worst part is I didn’t know why any of this was happening.

It was a surprise when I ended up in the hospital. I did not know why my muscles were breaking down, just that I was constantly tired and daily tasks were difficult to perform. My family and friends visited me during my stay in the hospital, but despite that, there’s a lot of alone time and uncertainty.

I was one of the rare and fortunate people in that I was correctly diagnosed within weeks. Many people with myositis end up seeing numerous doctors, and on average it takes 3.5 years to get a correct diagnosis. Some people are misdiagnosed for many years, as myositis can look like many different diseases. My diagnosis came after being readmitted in the hospital again for high CK levels, an enzyme found in the blood that measures muscle inflammation/damage. I was diagnosed with necrotizing autoimmune myopathy (NAM) and dermatomyositis (DM) in August 2019. 

Getting out of the hospital was one of the many challenges I faced. I had little control over my CK levels. My health was unstable and the doctors were concerned my CK levels were high enough to be admitted to the hospital again. I had limited mobility and I was a fall risk. It took months to find the right treatment. 

Myositis patients, ask family and friends to donate plasma

Mood swings from the medication, along with fatigue wore me down. Staying positive is difficult when people don’t understand your pain. What helped me get through was focusing on problems I can control. I educated myself through the myositis website and I joined a support group. I cope with the anger from the prednisone, a steroid medication, through meditation.

I started to exercise to strengthen myself, and so that I would one day be able to get up from my bed on my own. Writing in my journal makes me feel empowered. I appreciate the small accomplishments, things people in their 20’s don’t usually have to think about, like being able to reach an item from the shelf.

What helped me get through was focusing on problems I can control. I educated myself through the myositis website and I joined a support group.

Everyone has a different experience with myositis. For some people, they deal with pain and fatigue, while others have to use a wheelchair, walker, or a cane to move around. It took more than 3 months for me to go back to work, and many months to be able to walk for 30 minutes without exhaustion.  

Even if I failed to get up from my bed, I viewed my attempts as successful because I do not let my past failures define my future.

Progress is not a straight line. There are often ups and downs before you feel improvement. I was afraid that I wouldn’t get better because I was more tired today than yesterday. Sometimes I feared that I wouldn’t be able to do the things I love ever again. What helped me from feeling hopeless is by reminding myself that as long as I try to be better than yesterday, it’s worth it to keep going. You can’t change the past, but you can focus on what you can do now. Even if I failed to get up from my bed, I viewed my attempts as successful because I do not let my past failures define my future.

I remind myself that although there are things I can no longer do, I can appreciate the activities I can do. Slowly but surely, I am moving forward and I am now able to get out of my bed without any assistance, walk at a normal pace, and do one of my favorite activities again, biking.


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Sophia Mai

I was diagnosed when I was 25 and have both NM and DM for almost a year. Was on steroids for 6 months and currently trying to exercise again. I enjoy walking outside and doodling in my spare time.

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