Sometimes I’d rather stay in bed and disappear than go out. That is mostly because of my wheelchair. I am still not as self confident as I used to be, when I was walking. Last week I fell backwards with my wheelchair while getting off the tram. This felt so embarrassing. The helplessness of people always makes me feel uncomfortable. The craziest things happen to you when you are in a wheelchair. Sometimes the bathroom of a restaurant is upstairs or the only way to enter a building is using an escalator. One day my friend and I went to a restaurant and I wanted to go to the bathroom, so I asked the waitress where it was. She laughed and then guided me the way through the kitchen to a hidden elevator. I met the cook and a whole bunch of people working in that kitchen. Another time I went out with a friend and we wanted to go to a bar that was located on the roof of the building. There is an elevator but it only goes until the 5th floor, the bar is on the roof though. So we got out on the 5th floor and stood in the middle of children’s toys (there is a huge store in the building too) and could only find an escalator. A woman working in the store would come to us and ask if we wanted to go to the bar. She called a security guy and told us to follow him. We first went through a hidden door and then through the warehouse until we could see an elevator. He then took a card and swiped it over a button in the elevator and it started moving. We got off the elevator and went through another warehouse until we finally reached the bar. For going back down he told us to ask the waitress to go with us.
Those two stories are only two out of many. I often wish that I could just get up and walk. I know that I could do it sometimes but other times I would probably fall immediately. My illness is unpredictable and I try to adapt to it. During the last week I tried to walk as much as I can. It has worked so far and that’s mostly because I feel safe while I am walking with my dear friend Emma. I have never been alone and that helps a lot. Still for longer walks I prefer to take the wheelchair. Today Emma had another episode and while I was getting up to give her her phone, I had a dizzy spell and almost fainted. We both went home and took a nap. I am doing better now, but she isn’t. I „only“ have POTS but she has other illnesses and they are unpredictable too. Within all the struggle she reminds me that you can still be positive and do things. Meeting her has been such a blessing. It is the beginning of a new chapter. I am going to start to be more open about my condition and advocate for me and my fellow sick chicks. People keep looking at me, even staring whenever I have to walk a few steps and carry the wheelchair. I get that they are confused because most people think that when your are using a wheelchair you are paraplegic. There are so many reasons why people have to use a wheelchair. Normally it bothers me when people judge me but I try to see their side and understand why they are confused or why they are staring. October is dysautonomia awareness month and turquoise is the colour of the POTS ribbon, so come join me spread the word and raise awareness for conditions like mine.
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