When I became a chronic illness patient after my diagnosis, it took me a while to realize I was part of the „spoonie community“. I found out that such diseases rarely come alone. Most of the patients seem to have a whole catalogue of afflictions. I don’t. I have CLL and my immune system does not really deserve its name, but that’s it. However, once you are a spoonie, chronic health issues seem to pop up everywhere.
My chronic disease is an invisible one, which means that there will always be quite a lot of things you don’t see by just looking at me. In summer, I went to my home country where I wanted to meet up with each and everybody. I had a booming social life and was surprised by my own activity level. People who know about my CLL are usually disappointed when we meet, because there is not much to see. I will tell you about the things none of them could see while I was partying.
Today, on my 43rd birthday, I would like to tell you about two amazing experiences I had when I recently traveled through India. Both of them were extremely physical. One of them made me aware of cultural differences in our attitude towards death. The other one gave me insights about the poorest of the poor – and how the other half dies.
I once went to a party where people had done their very best to dress up – and then they all had to take their shoes off. The hostess was wearing an extremely tight and short cocktail dress, but she combined it with scuffs and the overall effect was ridiculous. (Also for the guests in their hole-in-toe socks) If you do your very best to look good during those bedridden or homebound days, don’t forget to choose your shoes carefully. I have summed up the golden rules for spoonie shoes for you here.
Do you know the saying that bad news travel fast? Well, so does chronic disease. Once you are diagnosed, you are constantly aware of symptoms and their influence on your life. And within shortly, you have to adapt to a completely new lifestyle. I try to beat my cancer by being faster. As long as I am strong enough, I want to be one step ahead.