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Wheel Chair Insecurity


Hope

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Some times I use a wheel chair and sometimes not. I find it much easier to get through a store in a wheel chair due to what I think is sensory issues dropping my bp. I still have the sensory issues in the wheel chair, I get weak, brain fog, and dizzy, tunnel vision, etc but do not have to worry about falling over, tripping, dropping things, or having to leave without buying anything because I think I might pass out before I get through the register. The wheel chair is good for this situation. Then, in the evenings on days that I am feeling well, I can be seen out watering my flowers standing on my own two feet, sometimes even walking to the corner and back or across the street to the neighbors house. Certainly I understand now why this is, but of course other people do not. I am very insecure about this and it causes me more anxiety to wonder what people think when I can walk at one part of the day, and not another? I REALLY want to go back to church more regularly. As it stands now, I only go when I think I can make it on my own two feet through the whole thing, which has been once or twice since Easter. I'm sure I can make it much more often in my wheel chair, but I'm too embarrassed. Not of the wheel chair itself, but that people know that I can walk and of course they don't understand why I am using it sometimes and not others. I guess at some point I'm gonna just have to let people think I'm crazy if I want to do the things I want to do. I so tired of staying home, when I could get out more in my wheel chair.

Anyhow, I just thought I would share because I figure that there must be others at the same point in this illness.

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I think I had the same fears when I started using my wheelchair. Also I hated to be in it. When I noticed how much easier it became to go out in my wheelchair I started to consider it my best friend. Over the years I learned that people didn't think anything at all. They were just shocked that I needed a wheelchair in the first place. I learned that the joy of being able to go out outweighed the fear of using my wheelchair and what others might think by far. And when people started asking questions I could explain them what was going on. I think it's better to enjoy your life than being scared of the thought what others might think. I learned that it was in MY head, not in theirs! Safe strolls!!!

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I too had the same fears, as well as embarrassment. But the more I got out and about, the more freedom I felt, those feelings started to dissipate. Especially since it lets me do more things with my family. Don't let what you think other people think keep you from having as full and happy life as possible. Remember, those who do not suffer from a chronic illness will truely never understand anyway. So do whatever it takes to make YOU happy and comfortable.

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Hi Hope,

What you are feeing is normal. At first, my son was really embarrassed and frustrated with POTS. I held off on getting a him a new wheelchair because he really did not want to accept the fact that he might have to be using one. However, my son was happy when he got his new power wheel chair. He felt bad in the manual wheel chair because he did not have enough upper body strength or endurance to keep pushing himself. Even when he was able to walk for that short 3 month period, the longest he could walk or stand up was about 10 minutes. Then he had to have the old manual wheel chair. He's much happier now because he has more mobility. So if you feel like getting out and going to the store to shop. More power to you even if you have to rely upon a wheel chair. I would not care what people think. If they ask, I would tell them about your health condition. People need to be educated about POTS.

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Hope,

I really encourage you to go out and enjoy life in your wheelchair. I am planning my first trip since dx to my dad's in FL and I have to fly. I fully intend to ask for a wheel chair assist in both airports. I might look healthy to others but I want to see my family and enjoy the time with them. I won't be able to do that if I try to walk and drag luggage through the airport... I'll be toast by the time they pick me up. What others think just isn't as important as my family to me. And I also am going to try to be a kid for a day and visit Harry Potter World at Universal but I know I'll have to do it from a wheel chair. I guess what I've realized through this illness (not that it's deadly) but that at 38, I really better get to work on my bucket list and seize the day whenever I can and however I have to because I never know what tomorrow is going to bring.

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