Living with Anemia
In the evening, it was like the Oktoberfest, and it was full of people. We didn't even get anything to drink. Suddenly my heart started racing. There was no warning.
Nothing. All I heard was: "We need to do something now." This renal anemia, when you've got it, it's like not having enough blood. So none of your organs get enough. My car, my very first. I wanted to study. I wanted to go into research.
I wanted, I wanted, I wanted. That was cut. One event sticks out in my mind. My Hp was 5 and the people who worked in my doctor's practice used to bet five marks on whether I'd be back the next day or not. It's a struggle to get up in the morning.
When you do get up, you don't feel like doing anything. You really notice it. Your body just doesn't want to do what you want it to. Totally feeble. Your body stops listening to you. There's no other way I can describe it. My brother will be here later.
So we think we'll go shopping when he gets here. That always takes about two or three hours and then I'm like deflated. End of the line.
I mean, there are days when I say, oh no, not today, just leave me in peace. Your Hp needs to be higher. You need to be able to maintain a constant pace again, be able to get around, but the medication doesn't last forever. There's no constant part. It rises very slowly and then drops again really quickly. When you're up, you have more energy than you know what to do with. And then you're suddenly back to where you were before, right at the bottom.
It's a vicious circle, really. I hope that they'll find something in the next few years that will be of use to us. To the patients.
And that we'll then be able to get a bit better or be more stable throughout the day, so that we can look after ourselves without outside help. You want to live. I wanted to live. I'd like to live. I'd like to enjoy more of life. And why shouldn't I ?.
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