It’s a strange realization that Boekkid only knows a world with internet. The digital world is almost second nature to him. His little fingers are perfect for navigating an iPhone and he moves a cursor with great ease across a computer screen. But he has also learned that information can be found in books, which we put into practice when he forgets the name of a particular dinosaur.
During an editorial meeting of In Beweging, we were discussing how the world was getting increasingly digitized. It seemed not too long ago that we were using index-cards to organize catalogues, but now we are already so used databases and search engines. I learned at university that a sound structure is needed to form the basis for a good (non-virtual) database. If the foundation is sound and simple it is easy to build upon it. Many IT-professionals will agree that great websites, apps or software packages start of as a sketch on a sheet of A4.
The Reumamonitor (RA-monitor) of the Dutch Arthritis Federation is a prime example of a well built site. RA patients can monitor their disease activity and daily functions on this website. The Reumamonitor (http://www.reumamonitor.nl/) is based on the DAS (Disease Activity Score) and is very user friendly. On an illustration of the human body, you click the joints that are painful and/or inflamed. You fill in the latest lab results of your ESR and on a sliding scale you determine how you feel, ranging from good to bad.
It was not difficult to translate the essence of this monitor to a sheet of A4 and adapt it to my needs. I added two other scales, for pain and mental fitness. I’ve hung it on the magnetic board next to my bed and start most days determining how I feel, by sticking red magnets on this low-tech RA monitor. By doing this I find it easier to determine what I can do that day and it gives me a sense of control over this disease. It has also proven to be a great way to teach Boekkid about RA. Because it’s visual and so simple, a four year old gets it. Somehow it made more sense to go low tech on the Reumamonitor, than showing it to him online. And it works! Sometimes he will come into our room and mark the monitor for me, asking me which joints hurt and how much ‘ouch’ I have. It’s ‘fun’ for him to do and gives him a better understanding how RA affects me.
I’m very grateful Boekgirl and I have been able to explain RA to him, without burdening him with it. It’s a given for him that I have this disease and sometimes I feel he accepts it more than I do. As he grows up I’m sure I will have to disappoint him on occasion, because of a flare. Both of us will have to learn to deal with these disappointments.
Thank you for your time, take care of yourself and remember to keep passing the open windows.
© Ferhaan Kajee, June 2010