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Afraid About What I Can Do And Can't


lieze

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Hm I can't relate to the feeling too skinny thing, but I undertstand how you feel about being unsure of what you're capable of doing. I'm the same way. I know if I go to a place where there are lots of crowds and I have to walk through them, it's going to set off my dizzines. It's not that I'm afraid of the people, I just know that it will make me feel unbalanced. So I avoid places like that. It's just sensory overload for me. On my better days I do just push myself to go, and usually pay for it afterwards. I don't let it stop me, but I it's always in the back of my mind if I'm going to be okay when I go places or if I'm going to be feeling horrible the next day.. I think that's normal for us to feel though.

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Lieze,

I know what you mean. I had so many pre-syncopal episodes before I got diagnosed that I just can't shake that fear of having them again. And I do get them, just not as bad as before. When I drive, I stay pretty close to home and do little bits as I can. Gradually I think the brain develops the 'happy memory' and decreases the 'bad memory' with each positive experience.

I think it is perfectly normal to have anxiety with this illness. Sometimes we don't know what is safe to do until we try. Baby steps, you know? Also, I have learned to only eat very small portions of foods that I don't know for sure are safe. That way I can catch a reation while it is still mild. What an education :blink:

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I find my world getting smaller and smaller too, Lieze. I just don't feel like feeling bad anymore in places other than my home. I don't trust my body, I don't know what it's going to do and I feel very vulnerable when these things happen when I'm out in the world. I have limited my activities more and more, however I think it's important that we don't totally give into this. Even though I don't want to go anywhere, I have to force myself because the kids need to get out and do things. I often find that I feel better mentally when I have accomplished a trip the park or the library. I can see where our situation could easily turn into agoraphobia, so I think it's important that we try to get out a little, even if just for short periods and at a slower pace.

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Leize, I go through phases where I'll have a POTS flare, bad tachycardia in a shopping centre or while out walking, or severe shortness of breath or awful pre-syncope while out and about or sometimes all three at the same time, and after the event it takes me such a long time to build my confidence back up to go back out and do stuff in the world. I find it helps if I have a supportive person with me at the time I am attempting to go back out into the world again. I think I read somewhere that your mum has been a help to you. Perhaps you could start by going with her to do something very quick and simple outside the home that doesn't take too long and not too much energy, and then return home straight after, and slowly build on that and keep accompanying her on little errands or trips until you have the confidence to do your own small trips, etc. That's what I've had to do each time I have a horrible POTS flare up. I am usually incredibly anxious the first time I try to do stuff again, but it gets easier over time as I keep trying. I agree with Songcanary that you have to train your brain to be less anxious about going outside by building up either neutral or positive experiences to doing stuff outside in the world.

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