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What does self-care mean to you when you hear it? I think it’s mostly viewed as taking care of your appearance: having a skincare routine, using the best products, keeping your hair and nails healthy and appealing, and treating yourself in ways that are satisfying to you. At least, that’s what I thought, but there is so much more to it that I think everyone should take into consideration.

You can look amazing from your hair and makeup down to your clothes and figure, but if that’s all you do for yourself, you are not practicing true self-care. The most important part of self-care is in the mind. Even though I am beginning to focus more on my appearance, I would like to share the self-care I needed to practice first. 

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I am always complimented on my confidence, and I don’t think others realize what I had to do to gain my confidence or even how I was years ago. Living with Pompe disease has always been a challenge to show your best.

I want to point out a few things that I think are a big part of self-care. The first and most important is putting yourself first, and not in a selfish way, but in a healthy way. For example, something I have a habit of doing is giving others so much of my time that it takes away the time I need to care for myself. That can be going to an event to support a friend when I feel sick and should be staying home to get better or staying up all night talking to a friend when I am missing out on sleep, knowing lack of sleep for me makes me fatigued the next day.

Anything that interferes with your health or well-being, you have to put yourself first and learn to decline. This all falls with spending time alone, resting, taking a break from everything and everyone, and while that’s important, it’s also important to do the opposite of being alone.

I’m not sure if it’s a scientific fact, but humans need to be around other humans. Without human interaction, you can suffer mentally, so keeping to yourself for too long is not healthy, and I am speaking from experience. This also goes with allowing yourself to ask for help. Everyone needs help, and Pompe can be more tolerant when you have help. 

My self-care came from learning from my mistakes and growing as a person. Accepting who I am and how I look and loving who I am. Once you love yourself as a person, you will begin to value yourself, and that comes with setting boundaries in your life.

Pompe disease can bring forth insecurities that didn’t exist because once you start losing muscles, your body will change, and your life will change, and that’s definitely something no one can be mentally prepared for. We understand our diagnosis and the possible outcomes, but we don’t really know what the experience will be like because every individual goes through everything differently. 

I can’t tell a newly diagnosed person with Pompe what to expect because they will take in everything in a different way than I would. I can’t say the treatment will give you more strength because maybe it won’t be for that person. 

I’m on a ventilator all day, and many others with Pompe aren’t. You have to learn who you are as an individual and take care of yourself as an individual. I have this confidence because I’m growing as a person, and I’m constantly learning about myself and loving who I am. People take care of what they love and need. If you buy a new car or new house that you love, you will cherish it and take good care of it. Understand, accept, love, and value.

That’s what self-care looks like with Pompe disease, and that’s what it should look like for everyone else.