Last week, I shared about the challenges in transferring care but this week continues to provide interesting predicaments.
Last night, the end cap on my port-a-cath just fell off onto the floor. A little freaky I won't lie but at least this happened in my residence room and I had quick access to all of the equipment I needed to clamp the line (For those of you unfamiliar with port's my end cap basically keeps the line that goes into my jugular clamped, without the end cap, I am literally wide open). Lesson to be learned, my nurses at home know to tighten my end cap to prevent this from happening and I usually double check it. But with the new routine and new care, this completely slipped my mind. I knew the moment this happened it was time to step back and rest.
This also made me think about the reason I am completing my doctorate, I do not intend to join the rat races of living and breathing my work, but rather intend to give voice to the stories of those with chronic illness. I guess I am like the tortoise, slow and steady is much better for me.
I have also experienced some of my favourite comments about how people think they know what they see when they look at me. And yes, my body is deceiving my illness is largely invisible. I know many of you know, the whole you don't look sick thing. But please I must say, I don't want to look sick, I want to look like me. Just because I don't always feel well doesn't mean I want to look it. Those are the days when concealer, foundation, and blush are my BFF's! On top of all that I had someone say to me a few days ago, "you are young, you can do it". Oh how misleading my body is! Yes, I may be young but my life has a whole different set of expectations and realities and that comment makes me feel I am not doing enough. Especially in the instance when I am struggling. I wish that people would not assume they know and be a bit more understanding to people with chronic illnesses trying their best even in their limited capacities.
But my friends, that is why I am here to share and learn more about the experiences of people with chronic illness. What an interesting learning process this continues to be!
Your Woman with DIGITS in residence