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It's really strange because after spending the last four years of being in a wheelchair I was so pleased to be taking steps but everytime I am on my feet all i can think about is hoping that I wont pass out. I havent passed out in months now but the fear is still haunting me and holding my walking back. Do you think in time that the fear will ease or am I going to be stuck with it???!!???? B):angry::)

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It's really strange because after spending the last four years of being in a wheelchair I was so pleased to be taking steps but everytime I am on my feet all i can think about is hoping that I wont pass out. I havent passed out in  months now but the fear is still haunting me and holding my walking back. Do you think in time that the fear will ease or am I going to be stuck with it???!!???? B)  :angry:  :)

I hope you won't be stuck with the fear. I really do understand how illness produces anxiety and fears and that, in turn, causes extreme fear and phobia's. I think there is help out there for you. First of all, it's a huge self-talk exercise. You need to try to remind and say to yourself when you are on your feet that you haven't passed out lately. Even if you do pass out it won't be the end of the world (although I know it's miserable). Can you start out by making sure someone is near you in case you really do start to feel bad? Also, try to make your surrounding as safe as possible so that if you do pass out or fall you won't seriously hurt yourself. Build your confidence slowly.

Is there a psychologist or social worker in your area that treats people with chronic conditions? They may be able to offer support to you as well.

Good luck. Keep us posted

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Another UK person, hurrah!

In response to your question...I was in a wheelchair for just a short while and I found it so frustrating.

I try always to exercise and keep walking now, because I found the more I stayed on wheels, the worse I got. It was like a vicious cycle. My orthostatic tolerance went through the floor.

I also got told at the National Hospital of Neurology last week that lots of people with POTS are in your position= they become terrified of walking for fear of what might happen. I was like that a lot after I broke my foot. I will never forget the terror and the pain that I felt. but I reached a point where I thought I can either carry on like this living in fear saying what if, or I can just say well, if I fall I fall, at least I'll have tried to move about. And once I did start moving, things got a lot better. Don't get me wrong- some days I have are terrible. But I've not needed wheels since March. I make sure I walk some every day- even if it's just 5 mins round the supermarket.

I don't know how you can get over the fear, really. I still get days where I'm frightened. But I try my best to carry on regardless. Because I get warning, I will just actually sit on the pavement if I'm out- regardless of how daft I look. I'd rather do that than stay in all the time and feel afraid.

I guess my advice is to say to yourself- right, part of me is scared. But I am going to focus on trying to conquer it. I am going to try and move about on my own. Maybe get a friend to grab your arm if you're on a shaky day? What about a stick? Or a zimmer? At least you will be walking, and that can only be good cos it will increase your orthostatic tolerance?

Good luck :angry:

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Hi,

I have the constant fear of fainting whenever I stand because it is my reality. But I still walk around the house. When I have warning I lie down immediately and when I don't well..... I don't want the fear to stop me from walking. So far, I only use my wheelchair to go for a ride outside and when I go to doctors. When I need to stop my meds for testing I wear a helmet because I had concussions before.

Ernie

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