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New beginning

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.

For further info about POTS visit:

http://www.dysautonomiainternational.org

6 comments

  1. Dear Claire, thank you so much for this blog post. I think we all are staying so far from all the disagreeable things, we do not want to hear, to see, to listen, to be a part of this until it happens with us. Being from Russia I know that situation there is much worse, nobody cares about people who need special conditions for normally sociaty living at all. That is why you can barely find even one person on a street in a wheelchair. And what you are going through right now all others can not even imagine. And this so brave. You are incredibly brave. Thank you for this. And as a photographer I wanna say that you are absolutely beautiful gentle and sophisticated girl. You will be ok, better than ok. No doubts.

  2. dear claire! i just have found your post in the blogger village-group.
    it makes me thoughtful while i was reading the article because it makes me sad that there isn’t more awareness about specific illnesses, in your case dysautonomia – pots.
    i wish people’s reaction in front of you and others patients could be improved, so they don’t appear so helpless and instead of a hurtful in a more empathical positive way.
    they don’t know, how difficult situations you and your family have gone through, i think. i also don’t know that, because i don’t know you and your complete story.
    but as a person with emotional feelings and as a medicine student, i try to understand your situation. i’m also no pots-specialist, but i heard about that and i think, nobody knows exactly how you feel without an own diagnose like this.
    but i wish there would be more medical know how and not so many clichés around us!
    i want you to say that it is really great to write about your personal feelings in this public way to reach many people.
    you can inform and spread awareness about your special situation with your blog. this is very courageous and tough! 🙂
    i’m looking forward to reading other posts from you! all the best, nice sunday!
    greets, sabrina

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