Hi everybody, John, Rare Patient TV. Well, living life with a rare disease is hard enough. But lot of times, it’s the caregivers. They are the inspirational force in allowing us to live, as close as we can, to a “normal” life. Without them, life would be exponentially more difficult. We may be able to do some of the things, that we need to do without them, but all so much harder. I know this very well. When my wife goes away, as she is my caregiver, I can do what I need to do, but it takes me an awful lot of effort and time. And every extra bit of labor you do, mental or physical, is points against your fatigue. You get a certain amount of points for fatigue for the day. And everything you do takes from those points. So in the morning is when you have your most energy. That’s when you need to get things done. Because as the day goes on, you start wearing more and more tired.
But if you’re declining in health, they see that every day. And it gets a little more difficult for them to take. Because every single day they wake up, they know they have to take care of you. And of course it’s done with love. And compassion. But eventually it starts to wear on them. And it’s very difficult. Cause it’s usually personal stuff. Whether it’s getting dressed. Or a bathroom. So if you are able to stand up, and put one leg inside your pants, and lift the other leg, and put it in, well God bless you. Because you are blessed. We can’t all do that. And to those of you who are having a caretaker make your life easier, think about what they’re going through. Try to make their life easier. Thank them every day. Whether they did something for you, or not. Cause they make your life that much easier. So keep us in your prayers. And until next time. God bless you all.
