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Being active and maintaining your strength is the most important priority when you have Pompe disease. It’s so easy to lose muscle mass and it will always feel better to choose rest over being active when you’re tired, which is almost always.

My body is very weak and using even a little amount of energy, such as opening a bottle of water, takes so much of my energy. Any kind of physical activity takes everything out of me, so for me to keep active I have to do one simple thing and that’s move. I don’t have much energy and I barely have strength so all I can do is move. 

When I had physical therapy in the hospital the therapist gave me a sheet of paper that had pictures of exercises that she wanted me to do but I couldn’t do the exercises by myself because I needed assistance.  I can tell you that I hated physical therapy and I never did them unless I was told I should by a doctor. 

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Now that I’m older I don’t need to be told to exercise because if I don’t I can feel my body shutting down. And I found that my body needs a range of motion. That’s all I have to do, just keep my body moving because not only can I hurt my muscles by not moving them but I have experienced poor blood circulation in my legs. I’m not sure if it’s because I can’t walk anymore but my legs give me the most problems. The stretching and movement of them are painful if I don’t move them often. Sometimes my feet and ankles swell up because of poor circulation and that’s always a serious matter.

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Because I have dealt with being bedridden in the past, I feel like my body is learning how to adjust to movement all over and it’s hard because I let my body deteriorate, not on purpose but getting sick and always being hospitalized caused me to get weaker. All I can remember is the struggle to sit up in bed and get a balance of my head. It was mind-blowing how the lack of body movement was detrimental to my health. 

The first time I felt my body completely weak was terrifying because I thought that was how I was going to be from that point on. I was scared and I didn’t think for a second that I was gonna get my strength back, but I did. And I did that by moving.

I had to keep sitting up in bed to get the strength back to balance myself. For me to stop the dizziness from sitting up in bed I had to get in my wheelchair and sit for an hour every day until I was able to sit up all day. Even though I can gain my strength back to an extent, it will always be so easy to lose it. So I keep my strength by doing my biweekly infusion and by staying active. 

Staying active for me is getting up and going out. I’m having the pleasure of having a very active summer this year, which I am so grateful for because last summer I had my surgery and I just kept getting sick during the healing process. I didn’t have much of a summer last year and winter was me gaining my strength back so just to be able to be healthy this year alone is something I can be proud of. And I know for me to stay healthy I need to keep a healthy diet and just get up and move around. I don’t care if it’s something as simple as going to the store for milk or whatever.

A little body movement is always better than none. I’m also learning how to manage a healthy body with seasonal changes. As I’ve mentioned before, it’s hard going out in the winter for me because of the snow and cold, but I think it’s important that my body learns to adapt to different temperatures. I think that’s important for everyone with any rare disease.