As you may know from reading my About-page, I have a heart condition. If you don’t know what that means, I’ll try to explain it as simple as possible. When I was born, my heart had a different composition. I went through several surgeries to have my heart the way it is now: still very different, but managing to work and to live okay-ish. Right now I simply say: I have half a heart, which is the shortest explanation. With that in mind, you can understand that there are adjustments that needed to be made in the way I live my life and things that are a cause of having a CHD (congenital heart disease).

‘Little things’ like:

1. Not riding a normal bike.

I have an electric bike, which helps with biking so it’s not as energy-consuming as it is on a normal bike.

2. Everything takes more energy.

You can probably imagine this, with my heart being half of a normal heart. Living everyday life is more tiring for me than for a healthy person.

3. I’m underweight.

This is not entirely the fault of my heart, but it doesn’t help it either. Like I said, everything takes more energy, and using your energy burns calories. It means that I would need to eat more to stay on a healthy weight.

4. I’m always cold.

Well, except when it’s 90 degrees outside. My blood circulation is not that great having a heart condition and all, and that means mostly my hands, feet and the tip of my nose are always cold. But not only that, during winter I’m always shivering. I cannot stand still if my life depended on it. I’m usually packed in three pairs of gloves, a scarf that is 10-feet long, a hat and a thick winter coat. That, with my clothes that usually consist of three layers, still doesn’t always keep me warm.

5. My immune system is not fully functioning.

Which also isn’t directly related to my heart condition, but more to low energy-level/underweight/always cold effects. Especially in the winter season. If I don’t get my flu shot every year, I will get the flu. That’s not a matter of ‘if’, but more ‘when’.

6. Not being able to go out and do stuff.

I wish I could go out more with friends or family, but after work I’m too tired and I need my days off to recharge for work. Now, I’m not really the ‘going to clubs every weekend’ kind of girl, but birthday parties or get-togethers are tiring as well. This results in lots of frustration from me and sometimes from my friends/family as well.

7. I can’t work full time.

I graduated college one and a half year ago and since then I’ve been applying for jobs in my field. Every single one I found was either a starter’s job and full time, or part time and required 4 years of experience. I now have a great job in a hospital and am still working at the supermarket, but both don’t fit my degree and I wish so much they were. That feeling brings me right to my next point:

8. My mental health is not what I want it to be.

It’s not good. I won’t say it’s bad either, because in the 23 years that I’ve had this heart condition it has definitely improved. But my confidence, self-esteem and everything that has to do about acceptance and loving yourself is still a work in progress.

9. On to a more obvious thing (literally): my scars.

Can’t have heart surgery without ending up with scars. But I don’t really mind anymore, they show what I’ve been through and I can be proud of that! (See! sometimes my confidence is okay)

10. I have to take medication the rest of my life.

Blood thinners and one that lowers my cholesterol, which both make me feel like an 80-year old because usually they are the ones taking that kind of medication. And next to that, with my immune system not working great, a lot of vitamin pills.

11. I’m not allowed to have babies.

Yes, you read that right. Not allowed. I probably can have babies, but the risks of that come with pregnancy and child birth are too high because of my heart condition. But it still is my own choice if I would want to take that risk(and I haven’t decided on that yet).

12. Obstacles everywhere.

Every time. Turn 18? Here are your health insurance costs. Can’t get a full time job? Well, you still earn too much for financial aid. Want to live by yourself? You can’t afford that next to insurance costs and with the income you have. I’m sure life will throw more of these at my face in time.

13. On a more positive note: I got a free laptop once!

And I went to an amusement park for free once! There are always companies and foundations that will try to make life for a chronically ill person (hate that term) better. Yay for that!

14. Protective family members.

Gotta love them. Though can turn it down a notch sometimes.

So that’s it! Hope it wasn’t too depressing, because really, my life is pretty great at this point. The older I get, the more I accept my life the way it is. And right now, I have a lot to be thankful for! (Hmm… next post maybe? 14 things to be thankful for…).

Any questions or suggestions are always welcome!