Disability after stroke

Yeah, that’s exactly right. People don’t have to give a shit about my problems, don’t have to spend their time or energy or pretend to care. Nobody’s keeping track, There’s no reward or punishment for caring/not caring.

So when it’s very touching that sometimes people do care. But I’m bad at saying “thank you.”

The worst is when I first wake up and I’m reminded of it all when I get out of bed and (edit: try to) take that first step.

Hugs
What helps you?

Getting hjgh. Forgetting for a few minutes.

I'm sorry a while back I giggled at your 2 of your posts... I didn't think you were serious about taking shrooms, and just the way you wrote how you said you looked etc I couldn't help but think it sounded a bit funny, this isn't funny and I just want to say I'd understand you want to forget about all this for a while. I don't even know what taking shrooms feels like. I have no idea what it's like to be you with half your body not working like it should, and thinking your time is short. I often second guess if I should post a reply at all but even though I'm a stranger to you I do care.

I really hope it wasn't taken as offensive. Nobody knows what it's like for someone else. I recently opened up about some real problems with my son and my own depression to my brother. And really, it's kind of judgement you get back when you ask what should I do, or more like how could he understand it, he's looking at me and my son through is own perspective. It does help to get out how I feel though. He said too, nobody cares, we have to care about ourselves when it comes down to it. You are supported here. I' I see you as genuinely authentically yourself. It's a lonely place to feel like you are on your own and you do all this on your own...and I'm rambling, I should just go to bed. I don't kow what else to say except I'm sorry for how much you struggle, and what helps you, do that. I'm hesitating to hit the post button, I feel stupid but want to also support you as others here do. If i hesitate any longer maybe my lap top will die and decide for me.

Oh, don’t worry about me taking offense. It was funny.

No one can realistically expect anyone else to know exactly what they’re going through, but it is refreshing to be in place where people are open about life’s hardships and being open in return isn’t met with judgement and doesn’t make you the odd one out.

Your brother is close to the truth, but not quite there. People care, but there’s not much they can do when it comes down to it; you do still have to handle your issues yourself.

Thank you

So, I don’t often talk about it because it’s just upsetting, but the month I spent in the hospital after the stroke was kinda horrific.

I’ll start by reiterating that I have panic disorder with agoraphobia. I’ve gotten better lately, but better means that aside from my therapist, I might go a month without leaving my home.

Also, I have a particular aversion to hospitals and medical procedures ever since I spent a few weeks in one as a child.

So, after the stroke, I developed a sore from laying in bed that got infected and required routine surgery to correct. But I had a bad reaction to the anesthesia.

They had to put in an ng tube (a tube that goes from your nostril to your stomach) and couldn’t give me food or water by mouth. All my nutrition and hydration was through an IV.

Of course, they had trouble explaining all this to someone with a fresh brain injury. I got combative and tried repeatedly to leave (a sight I’d pay to see, given that I couldn’t walk at the time). They responded by sedating and restraining me, which only made me more combative in my lucid moments, creating a loop that was only broken a few weeks later when I could have food and water again which gave them a bargaining chip.

Keep in mind that I have PTSD, and one of my biggest triggers is being prevented from leaving an uncomfortable situation. It’s a guaranteed panic attack.

I wish there was some satisfying end to the story, but there isn’t. I just went home, and am still trying to deal with the trauma of the situation.

I’m a little better equipped nowadays, but this was a big one.

I can only imagine what this must be like for you, and what happened. Certain things I can't mention here, but I've been restrained in a psyh hospital at least twice, and I wasn't even combative. Days like that. The first time, my brother saw me and started to cry. I couldn't talk because the medication they gave me was an antipsychotic (didn't know any of this at the time) but I tried to speak and I couldn't because my tongue twisted and wouldn't work. Turned out I learned the shot they finally gave me was cogentin, and should have been given to me much sooner.

I've had tubes shoved up my nose and into my stomach. I'm not comparing my experience to yours, yours is not something you did to deserve any of what happened to you. I'm sorry for the panic with agoraphobia, and having to go back to the hospital for treatment for your sores. That would be the last place you'd want to go. I have an aversion to doctors offices and hospitals, I'm not sure why, but later on it is now because they are the place you pick up any virus or whatever that can make you sick. So when I get home I wash my hands thouroghly, and even at home. I'm really sorry for what you've been through.

I knew someone on a forum years ago, not this one, who had agoraphobia. Eventually he got out a couple times to drive his truck, but I know he stayed mostly at home, which makes lonliness more difficult. He was online a lot, and I really liked him. I like you too, sometimes I come accross a post and you have a talent with humor even though you have so much pain inside. It's sometimes the ones who can make us laugh that struggle the most with physical and emotional pain. I wish i could develop a sense of humor, but it's just not in me.

We do care about you @Gonz and I'm thankful you're here. Don't be afraid to tell us when you just need someone to talk to. I think you know this. I'm glad you have us here, I don't know what I contribute but I can try and that's all anyone can do.

* proof read now it's ok

Yeah there's no other way. We can help support each other though. What we say, share, etc. helps me. Independent of that, I want to help you, and others when I can. Even though I have had to be my self to be when I'm here which is chronically embarassing and bizarrely freeing.
(h) @Gonz

I'm sure I don't need to say, that sounds horrific.. I have never heard of sedating and restraining a stroke patient. I wonder if they felt you lacked capacity to make decisions at this point in time, still I am really shocked they would do this. They would have to seriously way up the risks of this on your mental health. I am also really surprised you developed a pressure sore that then got infected, did they not have you on a air mattress to relieve the pressure? Sounds terrible, no wonder your dealing with the trauma.
Have you ever tried EMDR?