I don’t want to say we necessarily make mistakes living with Pompe disease, but we can tend to get comfortable to a point where we neglect essential things. We have to stay up on the latest science and treatments. I can speak on this because I neglect certain things I know I should be doing such as exercising and eating right. I won’t even go to scheduled doctor’s appointments if I don’t feel like going.
We all have our bad days, but it’s so important that we don’t get lazy with our health. Deterioration can be mistaken as tiredness. The next thing you know you can’t lift your arm as high anymore because your muscles got weaker from inactivity. And yes of course our biweekly infusions are there to help prevent this from happening, but unfortunately, it’s very easy for us to lose strength with Pompe.
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I make comfortability a priority. Whether I’m in my wheelchair or bed I have to be comfortable. Others don’t understand that it’s very hard to be comfortable when your body is different. Especially in a wheelchair, that’s why for many of us who use electric wheelchairs it’s a long process to get 1 because the chairs have to be specifically made for our bodies.
For me, being comfortable is a main priority in everything that I do. When it becomes a problem, I want to lay in bed all day because that’s when I’m most comfortable. And I think it’s safe to say that being active is not all that comfortable when you have muscle weakness all the time.
The thing I noticed that can be considered an issue is so many of us who are living with Pompe are prideful. I can understand newly diagnosed people who want to continue on a normal life but as you get older your body is going to change regardless and there comes a time when you have to give Pompe the proper care that it demands. That means learning how to listen to your body and how to pace yourself with everyday activities. We still have normal jobs, we’re parents, we have bills, we go to school, we have house chores. We have to learn how to live with Pompe and it can be very easy at first but it can also get very challenging with time.
I’m beginning to have issues with my legs that are related to poor blood circulation. I have been told by doctors that I have to move and stretch my legs. I do sometimes but not as much as I should and now it’s very hard to straighten them. I know a woman with Pompe who was told by her doctor that she should consider using walking aids because it’s getting harder for her to walk and because she didn’t want to she ended up taking a bad fall and spraining her ankle. We know what we need to do but we don’t do it for many reasons.
My parents will literally wait until the last minute to see a doctor when they know they don’t feel good then end up having to go to the emergency room. I will assure you that’s the worst thing you can do with Pompe disease. This might be the biggest mistake that we make especially when it’s concerning our respiratory because that will have us rushing to the emergency room while struggling to breathe. We have to figure out what works for us, not just as people living with Pompe but as individuals. I can’t speak for everyone when I speak of the most challenging part of living with Pompe but for me, it’s definitely a mental and emotional struggle.
We are grateful for the treatment that we have available for us because it has been seen as a terminal illness and many people have died from it. We have to be consistent with self-care and stop ignoring certain things that we shouldn’t be ignoring.