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Anyone Else Dealing With Guilt With Your Cataplexy?


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#1 radiostatic102

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Posted 11 April 2012 - 11:45 AM

Hello, it's been a long while since I've been here. I have narcolepsy with cataplexy.

My cataplexy has gotten worse. It used to be my neck going out with my chin ending up on my chest for a few seconds, or maybe parts of my face will droop and my eyes close themselves while they try to do the REM twitchy movements. These attacks would still all begin with the electric shock feeling in my brain and it causes me to feel drunk for a few minutes. There have been a few times where I have fallen because all of a sudden my knees and legs don't work. But it really wasn't often. It happened for about a month last November because we got to go on a special Thanksgiving holiday with my family. Only when I was really happy or extremely nervous.

These kinds of attacks still happen all the time during the day, lasting about 5 minutes each. But now my knees are buckling when I least expect them and it's happening ALOT. And NOW my knees aren't just buckling, but they're giving out and I'm falling down on the ground or the floor! It takes only a few seconds for me to feel I have the strength to get up again, and I can still use my arms to grab onto something if it's close enough. But it's happening ON A WHIM without any warning, and it's happening when I get happy. ESPECIALLY when I get home. But when me and my wife took our daughter to a playground, it was all I could do to stay on my feet. The brain jolt was happening VERY strongly and it was almost like it was shouting at me "HERE I COME!" I didn't fall thankfully, but I was trying to fight it as much as I could, which means I went and sat down. But it was just RIGHT THERE at the doorstep. And that's scary because I don't want to be seen falling down for no apparent reason. That's embarrasing!

I can keep from falling if I can focus on an object and only think about that object, like a stop sign or a soda machine. No happy, no sad, just soda machine. It helps alot when I do this. But I fight and fight and as I'm walking I have less and less control over my leg muscles, I start walking a lot slower, and especially as I'm near our apartment door my knees give out, I fall onto my knees which HURTS and then the rest of me goes onto the ground.


And I feel guilty because I didn't try hard enough to not fall. If I had focused a bit harder on that duck over there then I wouldn't have been happy about getting home. Instead I'm on the ground, even though it's just for a few seconds. But it threatens to happen now ALL THE TIME! I almost fell at the gas station! And I feel very guilty because I CAN make it to where I don't fall if I can just keep concentrating on whatever-it-is as I'm walking. But now I'm starting to see I don't have the control I thought I had.

Does anyone else struggle with this? Please let me know if you do.


Thanks

#2 radiostatic102

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Posted 24 April 2012 - 01:54 PM

I'll reply to my own question, because it's been about 2 weeks since I really started falling alot more.

I DID feel guilty because I was in denial and I was blaming myself because it's easier to blame myself and pretend I still have control whereas in reality I DIDN'T have control. I do a little, but if I get happy or upset there's no preparation, I'm going to fall.



So just in case anyone else out there was dealing with guilt.



I struggle with feeling guilty because I used to be such a hard worker and now I can't do that; and I hate accepting help from family, but I have to now and there's nothing that makes me feel better than beating myself up about it.


I had fallen before, but NOTHING like this. My knees get weak just enough that I actually fall on my knees. And depending how fast I'm walking that can hurt alot and due to the speed of my walking the rest of me joins my knees on the pavement or the floor. OWCH. So when I get very weak knees, I just stop walking and wait for it. That way I just look like I've gone all super-spiritual.



Anyways, I do hope this helps someone. Take care!