Saturday night, three weeks ago. I went out at about nine o clock, meeting some friends. At eleven o clock I felt I could be getting a cold. At two at clock at night my voice had become raucous. At about four o clock I went to bed. When I woke up, I was hardly able to get up anymore. Three weeks later, I am still sick. I have been through tonsilitis and bronchitis. The cold season for me doesn’t mean that the weather is getting colder. It means that I am constantly cold – and sick.
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.
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.
My immune system is so delicate. A sneeze turns into a cold turns into bronchitis turns into pneumonia. I am not kidding. I have been trying to boost my defense for at least twenty years. 99 percent of the usual natural remedies don’t work for me. Initially, when I found out that I had CLL it seemed like a logical consequence of those millions of viruses and bacteria which have inhabited my body. Of course, I still try to improve my resistance against infections.
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.
You know these forms you get when you see a new doctor. The ones, where you are asked whether you are pregnant, addicted, suicidal or whether you have any other serious disease. Until recently, the mention of my asthma and pregnancies were not alarming to any of my practitioners. Cancer is. Suddenly, specialists don’t seem to be in charge anymore and an endless journey of referrals begins.