Elin Wahlstedt is from Sweden and a regular contributor to the CME Medical Knowledge Centre. Elin has a rare medical condition that makes her dependent on Total Parenteral Nutrition (TPN). Here she shares her story of growing up with her condition.
I got sick when I was four and I honestly don’t remember much from the beginning of my journey. I have some memory flashes but it’s hard to make out which are actual memories and which are just pictures I’ve created from stories my parents have told me.
What I’m trying to say is that I can’t remember a life before my diagnosis. In my mind this is how it’s always been and probably how it’s always going to be.
Growing up, I’ve spent most of my time in the hospital, sometimes it feels like that’s where I spent all of my time.
According to my mother our routine used to look a little bit like this:
Every Monday I had a regular visit to the hospital to make sure everything was okay and to get some treatments. The problem was it was never really okay and this lead to us having to spend the night, or two, or three. Sometimes we had to stay longer. Then we got to go home for a few days and on Monday we went back for our regular visit and the whole thing started over again.
I think it’s safe to say we were regulars at the hospital for most of my time growing up, which was fine when I was in kindergarten but it soon became a problem when I started school. Keeping up with school can be hard enough even without weekly visits to the hospital. Luckily, I was able to get help with my education through a teacher working at the hospital. I am thankful to her and the little school she had located in the unit. I remember taking tests in her office and how she would come visit my room with homework a few times a week. I wasn’t really a fan of it back then but today I’m happy she kept pushing me, otherwise I would probably have had to retake a year or two.
When I got older we learnt how to treat me at home instead. Sure, there were still sometimes I had to visit the hospital but the older I got the less time I had to spend there. The problem, though, was that I spent more time at home in bed than I did in school. I therefore had a period of time where I was home schooled. A few times a week a teacher came to my house and taught me math, Swedish and English. At this point I think I was in third grade so I was probably about ten years old. Thanks to this home schooling it was easier for me to get back into my school class again.
Against all odds, and because of the help I got with my schooling, I managed to graduate with good grades and today I’m in college studying to be a nurse. My hope is to be able to give all the comfort and joy my nurse gave me to another sick and scared child. I want to give them hope for a better tomorrow.
By Elin Wahlstedt