Any Ideas?

[[Ro...]]

I have become reclusive during this nightmare.  I have no explanation except the truth, which, of course, no one understands.  I am trying to think of an actual medical condition to use as explanation, that others would understand.  Might seem weird, but I don't like people thinking I am antisocial for no reason. 

 

Other than fibromyalgia or cfs, does anyone have any ideas? 

[[Te...]]

Roemer, I don't have any ideas, but I feel the same way you do. I'm fighting the battle of my life, but no one knows. They wouldn't be able to understand if I DID tell them. It's hard, especially at the holidays when people like to gather together. What have I done the past three years? I've been surviving, that's what. And with anhedonia still, I don't have interest in hobbies I once had. I'm not willing to lie. There's going to be a gathering where I live this weekend, and I doubt if I'll go. People here probably think I'm antisocial. I keep thinking "when I'm healed, I'll be doing things again." But who knows when that will be?

 

This is difficult in terms of the body and mind's upheaval as well as the upheaval in relationships. It changes a person in every single way.

 

It would be great if there was a name for it. I'm not comfortable telling people I have brain damage due to a drug, especially if I told others that I was almost three years out. I wonder if they'd believe me. My sister and brother-in-law don't even believe me.

[[Ro...]]

Terry,

 

Thank you.  I am right with you.  I am in month 28.  What a ride!  I have had wonderful, noticeable recovery.  What remains for me is fatigue and insomnia.  Insomnia better, fatigue worse than ever.  Will have to look up anhedonia.  With you, past 28 in survival mode.  I found a breast lump, cancer scare, turned out okay.  Friends rallied.  Saw no rallying with this.  Way back when I talked about it, I got no response.  No one asked or asks me how I am.  So lonely.  Thank God for this forum.

 

No one believes it can go this long...not even docs.  I do know I am healing,  but so slowly.  What I miss most is travel.  No point in that.  No sleep just makes for a miserable time.  I don't want to lie exactly, but if I could creatively come up with something that maybe someone could relate to.  I now lie the few times I am still invited.  I hate that!

 

Have you seen noticeable improvements!?    I used to cry and cry.  That is over.  The emotional craziness seems over.  I am retired, so at least don't have to worry about working.

 

Take care!

 

Judi

[[Fl...]]

The problem is that no one is going to understand any of this stuff. Unless you say "I have cancer" or something else that gets heavy news coverage no one is likely to pay any attention.

 

Me? I just tell people that I have neurological damage that was caused by a prescription drug. Simple, to the point, truthful and probably as impactful as you can get for an invisible condition like this.

[[Te...]]

Roemer, yes, I have noticed a lot of improvement, mostly in my 31st and 32nd months. But it's s-l-o-w.

 

I have seen many doctors, but they just don't seem to get it. It's very lonely.

 

Wonderful that your cancer scare is over and all is well!!  :thumbsup:

 

It's so hard for people to understand that I don't bother saying anything. I have had anhedonia for a long time - have not been really excited unless I'm in a window, and have not done any knitting for a long time. People say, "Oh, I've had that, too, when interests seem to drop off for awhile." But I know it's because of the benzo. Blood pressure problems since this started. Spiking. Ending up the the ER. But I hope that's lessening. Anxiety through the roof. All these, I hope, are slowly going away. But slowly.

 

Take care, too, Judi!! 

[[Ro...]]

FloridaGuy,

 

I like that.  True yet mainstream enough.  😐

 

Terry,

 

I have, sadly, come to accept it as it is.  Don't push anymore.  Grateful for the simple things...sunshine, my cats, Netflix, walks, books.  I believe what is happening is my gaba receptors are figuring out healing.  I think the fatigue is caused by it being overactive now.  I sleep better, not great, but better than ever.  I will take some fatigue if it means I am not wired and sleep some.  Our bodies want to heal and will eventually if we don't interfere.  Sure slow, however!  😂

[[Te...]]

Yes, I am grateful too. I write in a gratitude journal every night. Thank God it's sticking! I wrote in one before but let it slide.

 

You're right - being grateful for the simple things!

 

It's good that your sleep is better. I know that's been one of your worst symptoms.  :thumbsup:

 

Yes, we are healing, slow but sure.

[[ci...]]

I tell people I had an adverse reaction to a prescribed medication which has caused some neurological issues which at times can be uncomfortable/painful but hopefully will resolve in time.

[[Wa...]]

I tell people I had an adverse reaction to a prescribed medication which has caused some neurological issues which at times can be uncomfortable/painful but hopefully will resolve in time.

 

Really like your explanation 

I too have been trying to come up with an explanation for when the time comes to have a life again or if anyone should inquire about where I've disappeared to.