Elin Wahlstedt is dependent on TPN. Coping with her condition on a daily basis takes a lot of planning. Despite this, she appreciates her life and has ambitions for the future.
Elin was diagnosed with a rare medical condition at the age of seven (read about her early years here). Having spent several months in hospital getting used to the TPN, she was ready to take care of her own TPN at home.
“The nurse that had looked after me since I first stepped into the hospital that night when I was four, and my closest therapist, gave me lessons on the TPN. I am now 20 and take care of everything myself.
“For me, learning how to take care of the TPN was a chance to get some freedom in my otherwise so overly controlled life. Everything so far had been on my mother’s terms, obviously. She wanted to get the TPN finished before it got too late and she got too tired. If I was out late with my friends I had to get home before she went to bed. So being able to insert the needle and get the TPN in order meant that I could stay out later with my friends. That was an amazing feeling. But with that freedom came a lot of responsibility.
“Now everything is on my shoulders. I have to make sure that we don’t run out of any supplies or medications, something that sounds rather simple but is a lot more complicated than you might think. There is planning on how long it will take for the pharmacy to send for the supplies and then for the supplies to arrive at the pharmacy and for me to pick them up. It’s a lot of planning and it’s all very important because if I run out of something I’m in big trouble.
“On a daily basis I don’t think much about the TPN anymore, it’s more or less like a routine. I wake up in the morning, I go to the bathroom, I disconnect the TPN and I take my dog for a walk. I do it without thinking. Same with the evening routine: take the dog for a walk and then connect the TPN (in that order, especially in the winter because its not good for the TPN to get too cold).
“What affects me most in life is my energy loss. Because of my malfunctioning small intestine my body does not absorb all the energy from the food that I eat. Although I get the TPN, I still don’t have the same amount of energy as a normal person. I can’t work the same hours as a normal person, for example, and in the future that might be a problem. It’s very hard to move from home with only a 50% salary. So something that should be an exciting part of my life (getting my own apartment) is unfortunately full of worries. It needs so much planning, for example: trying to find some sort of compensation for the 50% work hours I can’t do.
“Everything needs detailed planning in my life. Everything. Spontaneity is not even an option. And I do get jealous when I hear friends talking about buying a one-way ticket to some exciting country, knowing that I won’t be able to do that. It would need contact with a hospital, with a pharmacy, getting my TPN sent to this foreign pharmacy from Sweden, and somehow getting all my supplies and other medications there. I can’t really just jump on a flight and leave everything behind.
“But despite that I am happy with my life. I wouldn’t change it for anything! It actually scares me to think about who I could have been if I hadn’t gone through all this. How my relationship with my parents would have been, because all that has happened in my life has made me realise what amazing people they are. Just learning how to take care of the TPN has opened my eyes for what my mom has done for me every night. Now matter how tired she’s been, she got up and got everything done without as much as a sigh, and that is truly remarkable. Because truth is; the only thing worse than being chronically ill is having a child that is chronically ill.”