Who Else Is Terrified Of their Illness?

bpcyclist · Aug 26, 2020 at 09:32 PM

No man or woman scares me anymore. But my brain? It absolutely terrifies me.

Does yours? If so, how do you manage that?

Hugs!

Aug 27, 2020 at 05:03 AM

I have come to the conclusion that I have early onset dementia. well, I can't really say for sure (and I don't know anyone else in their 20's with it), but I'm forgetting things all the time now- simple things too, after really short amounts of time.

I think the fibro is my biggist fear, though. if it's this bad now, what's it going to be like in a few years?. my body is aging far quicker than it should, and that to me is a scary thought

Aug 27, 2020 at 05:04 AM

re: my fibro, I don't even have " good" days anymore

a good day for me is being able to walk a few steps

scatterbrained04 · Aug 27, 2020 at 05:13 AM

Yeah I can relate to that. I'm terrified of my depressive and mixed state episodes that are to severe degree. When I feel good, I walk around scared of the next big episode. I'm actually dealing with feeling scared right now.

FluffyDinosaur · Aug 27, 2020 at 06:18 AM

Not terrified, more like hopeless with no outlook for a better future.

Soupe du jour · Aug 27, 2020 at 06:43 AM

I don't know if I would have used the word terrified, other than for some of my delusions of persecution (and an hallucination I had seeing the devil). I definitely had years in my illness when I was overwhelmed by it much of the time. I also had periods of extreme anxiety/panic.

I am relatively secure now, even despite everything coming up in my near future. That's not to say I'm not at all concerned about it all causing stress enough to make me manic. Stress, hypo/mania, with anxiety mixed in is a dangerous combo for me and one that can often lead to psychosis. When I am in psychosis under these circumstances, I am quite dysfunctional. Quite.

*Beth* · Aug 27, 2020 at 03:32 PM

I used to be terrified of my own mind, until just this year when I'm finally on a combination of medications that really are working for me. Prior to that, absolutely. I lived in fear of my mind, my illness, whatever it might be called.

Now, with the meds I'm on and the therapy I'm in, I feel much more in control, not so much like I'm being controlled.

*Beth* · Aug 27, 2020 at 03:33 PM

Quote:

Originally Posted by raging vortex

I have come to the conclusion that I have early onset dementia. well, I can't really say for sure (and I don't know anyone else in their 20's with it), but I'm forgetting things all the time now- simple things too, after really short amounts of time.

I think the fibro is my biggist fear, though. if it's this bad now, what's it going to be like in a few years?. my body is aging far quicker than it should, and that to me is a scary thought

I'm so sorry for how bad you're feeling.

I don't think people can get dementia in their 20's. My guess is that it's the fibro that causes your brain not to function so well

Living in LaLa Land · Aug 27, 2020 at 03:35 PM

Not terrified. Worried.

Worried that my mind will never be the same as before meds.

swimmingly · Aug 27, 2020 at 04:04 PM

Same as @livinginLaLaLand I'm worried. I'm worried of the word jumbles, word losses, mind zaps. Inabilities to remember names of people I've known for 44 years.

Worried that I'll never feel happy, normal, at ease, fun, funny, charming, non-weepy, ever again.

Sometimes psychotic · Aug 27, 2020 at 05:37 PM

I was Initially.....mostly for fear I could accidentally hurt someone else. Like I remember the delusions and voices telling me I could save th world and it had to do with framing a friend for a crime because he was actually th devil

. I set rules in place that I consider unbreakable today....no saving the world on my own...acting as part of a team or donating like to police fine. It’s th isolation that leads you to act on delusions. I’m not violent at all so I don’t worry about that but I set up the no killing hitler rule as well. Problem is a broken Brain

can convince you anyone is evil.

Those rules combined with long term stability leave me somewhat less than terrified today. Don’t get me wrong I respect the illness and what it can do but I’m not afraid anymore.

*Beth* · Aug 27, 2020 at 06:29 PM

Like LaLa and Swim, I worry about brain damage from meds. I mean...I used to be proud of my vocabulary. Now I refrain from having conversations because I can't recall more than the most basic words.

Living in LaLa Land · Aug 27, 2020 at 09:58 PM

Quote:

Originally Posted by BethRags

Like LaLa and Swim, I worry about brain damage from meds. I mean...I used to be proud of my vocabulary. Now I refrain from having conversations because I can't recall more than the most basic words.

I'm a writer and cannot find the right words like I used to. I'm scared of this.

BeyondtheRainbow · Aug 27, 2020 at 10:42 PM

Terribly........if something happens with clozapine my entire life implodes. It's a constant fear that the thing that controls my brain is going to be lost and I will die.

Moose72 · Aug 27, 2020 at 11:09 PM

I mainly worry thatI'm wasting my life because I have to be on disability and can't work. I have very little structure. Every day is similar. I need something to activate my brain. That's why I like talking with my friend C but 3 hours can go by in the blink of an eye when I could've been cleaning. I do try to clean while on the phone butits not easy.

FluffyDinosaur · Aug 28, 2020 at 12:01 AM

Quote:

Originally Posted by swimmingly

Same as @livinginLaLaLand I'm worried. I'm worried of the word jumbles, word losses, mind zaps. Inabilities to remember names of people I've known for 44 years.

Worried that I'll never feel happy, normal, at ease, fun, funny, charming, non-weepy, ever again.

I struggle with this as well. I do still have hope that it's the depression and not the meds (I haven't been on meds that long and try to keep them to the bare minimum). I hope that I'll get back to normal once I finally manage to get stable again. But right now I'm functioning nowhere near the way I used to, and it's scary as heck.

fern46 · Aug 28, 2020 at 05:30 AM

I do carry fear. I wish I didn't, but the severity of what I put my family through was just too much for me to not be afraid. I am not sure how anyone can lose control of their mind and not be at least a little afraid at times.

I am no longer terrified though. For a while, the fear and confusion was all I felt. I knew that would lead me down a dark path and decided to navigate to some place better for me. I decided to accept the fear and work with it.

I see the fear now as a helpful teammate. It reminds me of what I'm dealing with after time passes and the memories start to fade. It motivates me to stay vigilant when I want to do things that are unhealthy for me. It gives me greater empathy and the ability to connect with others who support me and those I offer support to. My fear motivated me to learn all I can and try new tools and techniques as my illness evolves.

I am grateful to my fear, but it is only one member of my team. Equal and unique.

Jmayfair · Sep 20, 2020 at 10:25 AM

I am afraid of my illness. Like fern46 I put my family through too much to not be afraid. I cannot believe what I am capable of until its too late. Luckily my family is caring enough where they help me to feel better once the worst is over. I really hate myself for the of control I get involved in.

*Beth* · Sep 20, 2020 at 02:19 PM

Quote:

Originally Posted by raging vortex

I have come to the conclusion that I have early onset dementia. well, I can't really say for sure (and I don't know anyone else in their 20's with it), but I'm forgetting things all the time now- simple things too, after really short amounts of time.

I think the fibro is my biggist fear, though. if it's this bad now, what's it going to be like in a few years?. my body is aging far quicker than it should, and that to me is a scary thought

But you know, loss of cognitive ability is an aspect of fibro. Impaired memory, etc. is so typical of fibro.

BNLsMOM · Sep 20, 2020 at 04:09 PM

I worry because I have had about a year of relative instability after 6 years stable... but before that I was hospitalized at least twice a year for five years. I can’t ever let that happen again because now I am a single mom and cannot risk my youngest who is 13 having to uproot his life to stay with someone else.

What I fear are my thoughts. They can get really dark, really fast. But when I can, I tell myself they are just thoughts and are not my current reality.

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Who Else Is Terrified Of their Illness?

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bpcyclist Legendary Member Since Sep 2019 Location: Portland Posts: 12,681 (SuperPoster!) 4 40.2k hugs given	Aug 26, 2020 at 09:32 PM #1 No man or woman scares me anymore. But my brain? It absolutely terrifies me. Does yours? If so, how do you manage that? Hugs! __________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield
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Anonymous32451 Guest Posts: n/a	Aug 27, 2020 at 05:04 AM #3 re: my fibro, I don't even have " good" days anymore a good day for me is being able to walk a few steps
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scatterbrained04 Magnate Member Since Feb 2015 Location: Ohio Posts: 2,868 9	Aug 27, 2020 at 05:13 AM #4 Yeah I can relate to that. I'm terrified of my depressive and mixed state episodes that are to severe degree. When I feel good, I walk around scared of the next big episode. I'm actually dealing with feeling scared right now.
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FluffyDinosaur Grand Member Member Since Nov 2019 Location: In my head, mostly Posts: 754 4 31 hugs given	Aug 27, 2020 at 06:18 AM #5 Not terrified, more like hopeless with no outlook for a better future.
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Living in LaLa Land Member Member Since Aug 2020 Location: United States Posts: 94 3 178 hugs given	Aug 27, 2020 at 03:35 PM #9 Not terrified. Worried. Worried that my mind will never be the same as before meds. __________________ Bipolar 2 Currently on: Trileptal (300 x 2) Feeling: A bit hopeless
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swimmingly Grand Poohbah Member Since Jun 2020 Location: Central Massachusetts USA Posts: 1,585 3 3,398 hugs given	Aug 27, 2020 at 04:04 PM #10 Same as @livinginLaLaLand I'm worried. I'm worried of the word jumbles, word losses, mind zaps. Inabilities to remember names of people I've known for 44 years. Worried that I'll never feel happy, normal, at ease, fun, funny, charming, non-weepy, ever again.
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Beth catches the flowers Member Since Jul 2019 Location: Downtown Vibes, California Posts: 15,701 (SuperPoster!) 4 23.7k hugs given	Aug 27, 2020 at 06:29 PM #12 Like LaLa and Swim, I worry about brain damage from meds. I mean...I used to be proud of my vocabulary. Now I refrain from having conversations because I can't recall more than the most basic words. __________________
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BeyondtheRainbow Wise Elder Member Since Apr 2015 Location: US Posts: 9,226 (SuperPoster!) 9 9,383 hugs given	Aug 27, 2020 at 10:42 PM #14 Terribly........if something happens with clozapine my entire life implodes. It's a constant fear that the thing that controls my brain is going to be lost and I will die. __________________ Bipolar 1, PTSD, GAD, OCD. Clozapine 250 mg, Emsam 12 mg/day patch, topamax 25 mg, ,Gabapentin 1700 mg & 100-2 PRN,. 1.5 mg clonazepam., 50 mg Seroquel
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Jmayfair Member Member Since Feb 2020 Location: NYC Posts: 75 4	Sep 20, 2020 at 10:25 AM #18 I am afraid of my illness. Like fern46 I put my family through too much to not be afraid. I cannot believe what I am capable of until its too late. Luckily my family is caring enough where they help me to feel better once the worst is over. I really hate myself for the of control I get involved in.
	Reply With Quote