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Fear Of The Unknown

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Lately I've been processing all that's happened since I got sick.

I have nightmares about last year when I was really having problems. I dream about passing out and waking up for a moment and not being able to tell anyone what is wrong or what I am feeling. I try so hard, but I can't do it. In my dreams, my mind is screaming and yelling at my mouth to just move already, talk! But I can't, and then I dream I pass out again and wake up in the hospital and the same thing happens again. This happened more than I want to remember. But some part of me recalls what happened I guess!

I don't like to think that tomorrow I could feel that way again- a captive of my body. Tomorrow I could be so sick people will have to carry me to the bathroom and I won't be able to stand on my own or say what I want to say. I don't think it will happen, but it could. And if not tomorrow, the next few years, and if not the next few years, some time in my life...

How do you deal with the fear of crashing again?

I see a counselor, which helps, and I know Jesus, which also helps (because I know He'll be with me regardless and that He's in control).

I don't want to live in fear, and I choose not to. But I was wondering if you guys have any strategies? Or are you all scared too?

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Yes, I am scared too. Things were really bad in February of '06. I was in really bad shape and thought I might die -- at times wishing I would just die because I so sick and so terrified by the symptoms. I demanded to be hospitalized, begging for them to figure out what wrong with me. I hadn't slept for 12 days because everytime I started to doze off I would be jolted awake, heart racing and feeling like I could not breathe. This happened one night in the hospital and I tried to scream for help, but my voice was like paralyzed and all I could do was whisper "help, help." Oh my god it was terrifying. They never figured out what was wrong and I was discharged as sick as when I went in. Things slowly improved in the month that followed, but I still had (and have) lingering symptoms --later found out it's POTS. What scares me is being back in --THAT place-- at a crisis level. And what was just as bad was the Dr's not really beleiving me. In a three day period I had been to three different hospital Emergency Rooms. Each one did an EKG and each one sent me home with an anxiety diagnosis. I knew it wasn't anxiety -- but they would not listen. It was like being in a bad twilight zone episode. I feel traumatized by the whole thing. I wonder if this is what like post traumatic stress feels like? The good news is that the more years that pass, the more removed I get from 2006, the more confidence I have that it probably won't happen again --to that extreme. I try my best to ignore the symptoms, to work with them and live my life, but it is hard. In the end we have no control over this, so I guess all we can do is try to have faith.

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I am scared of EVERYTHING. I used to not be like this but having phobias is so common in Dysautonomia patients. We are in a constant state of hyper-awareness that it is almost inevitable. The way I deal with it is much in the way that Naomi mentions...we don't have much control so there comes a point in time where you just have to let go. Your faith in God will help you and another thing I've been doing lately is trying to live my life while I can in case I ever do get like I was when first diagnosed. Rather than fearing that bad place I was in, I try to live now in this place of functional ability. I guess I just got tired of "waiting to die".

I do have a personal story that helps...I had a half brother that died a few years ago of Lou Gehrigs disease. That is one of the worst diseases in the world to have b/c the person has a fully functioning mind but slowly becomes paralyzed in their own body. Until it gets so bad that the muscles to breathe become paralyzed too. Through all this, my brother had such a healthy spirit of life in him, with a great sense of humor. I figure, if he could go through THAT with a positive attitude, I will go through this the best I can.

I hope you feel better, you are in my prayers!

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Well today I guess something is in the air with the thinking about fears of the unknown and frustration of wanting my life back! I felt of the verge of a nervous breakdown today like a hand full of other times since this condition began...I broke down and just started crying in the middle of grocery shopping thinking how in the world can I try to function like a healthy person when I know I'm not, I keep pushing and pushing to only feel worse and mentally I am now in a fog.

I hardly ever drive and after that breakdown I was so angry at my illness and what its takes from me daily I said I'm driving home which is a 20 minute drive, the whole way gripping the wheel telling myself be calm and breathe.

I have a fear of NOW my mind doesn't even allow me to think about later or what its going to bring.

I'm so tired of being dependent on anyone I just want my life back I feel robbed and who do I blame?

Sorry but I am feeling mentally weak and had to get that off my chest.Maybe 2morrow will be easier I have thought of never leaving the house again because it is just too much.


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Wow, I nearly posted about this same subject yesterday. I live in fear of having a repeat of my worst years. I have nearly the same story as the other posters. Even though I am better for now, I do have bad days and I am always thinking ahead about the 'what ifs'. I have been the ER route too, with clueless drs and it was horrible. I think the reference to post-traumatic stress is RIGHT ON.

I have thought about seeing a counselor as well just to get some advice and get this off my chest. What I have done on the practical side is fill out emergency contact cards for my wallet and car. And I have considered getting a medical alert bracelet. I remember many years ago when we went out of the country for a vacation, I had our wills etc. updated and after I did that, I felt like we did all we could humanly do. So it boils down to just living and letting go.

Even the healthiest people can get hit by a bus. So really, are we any more at risk than others? Before I got sick I never thought this way. But now I feel much more vulnerable and it's a hard feeling to shake. I totally understand this fear. Hopefully time will ease this scary feeling.

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