Disability after stroke

This made me giggle.

There are those people! And they won't fully relate. I've not met many who struggled with their mental health as much before the physical.

I have to caveat that I tried to join the community from my personal instagram and wasn't able to. It seems like some people just know how to and are able to form a community (more than others like me).

You can always just look around and see if you find psges you like.

Sending love....

Was there any formal process to this, or did they just abandon their responsibilities?

I've found that with healthcare, you might be advised by a doctor to do something, but they set things up in such a way that you have to take an active role in order to get the treatment/test/ect.

I think the idea may be that they'll only give you the treatment if you complain about not getting it, since they don't want to pay for it, and they figure anyone who doesn't complain doesn't actually want the treatment anyway.

I think getting the support is actually important, so I hope you'll ask them to follow through with the treatment that they're supposed to be providing.

It was the insurance. They would only cover treatment for a certain amount of time after the stroke, and they counted the time I was in the hospital, and the time right around Christmas when I couldn’t find anyone.

It’s possible I could have got them to cover more if I had fought for it harder, but it’s kinda hard for someone with a fresh brain injury to fight with insurance.

Youtube videos, and determination to at least be independent even if I’m not going to get 100% better, have gotten me this far.

That's true. In principle there might be some free legal aid out there for you to fight the insurance, but it might not be a route you'd want to go.

I’ve mentioned feeling my health failing before. Nobody (in real life) took me seriously. Then I had a heart attack. I kept talking about it, and was told I was exaggerating. Then I had a stroke. Now they take me seriously (ish).

Only 1 in 4 people are still alive five years after what I went through. On top of which, I found out I have a genetic condition that causes problems with my blood vessels, meaning I’m more prone to heart attacks and strokes to begin with and there’s nothing to be done about it.

I’m 43 and my odds of making it to 50 look pretty slim. Which I’d be fine with. I guess it’s kinda sad in the abstract, but I was okay with being the next to go even if it was at a young age. After Jessica died, I was just done.

Walking is still a chore, and everything is 1000x more difficult because half my body doesn’t work right (why did it have to be my right side?).

I made myself a sandwich. You have to hold the bread while you spread condiments on it, which I can barely do. I clumsily held some turkey in my right (bad) hand, and tore pieces off with my left. Literally just mayo, mustard, and turkey; the simplest sandwich in the world, but it took me almost half an hour to make it.

Then, while I was cutting it, my arm spasmed and I threw it across the room.

Then came the ordeal of cleaning it up.

You should see me make my bed. Fitted sheets are the bane of my existence.

Not how I wanted to spend the rest of my life, but it did make me more okay with everything.

But now my dad has to have stage 4 fucking cancer and I hope to god he goes into remission and it lasts a good long time, but now I’m going to spend what little time I have left worrying about and likely grieving him.

I can’t take anymore. I just fucking can’t.

You know when Bilbo told Gandalf he felt like butter that had been scraped over too much bread? I know exactly what he meant.

I wish I had words Gonz. I don't. I'm here. I'll sit with you in the dark.

I am so sorry. I have no words. I think you are incredibly brave.

@Gonz
I'm reading, and writing here even though I can't even hope to come up with help.
What you write here on SF shows us your mind and heart are brilliant despite the heart attack and stroke disabilities.
I'm sorry the terrible blows, for how cruel it is that your dad is sick with cancer.
Keep tring for the sandwich.

All the literature says it, my physical and occupational therapists said it, the neurologist said it; I’m going to be fatigued. There’s a cluster of symptoms that people tend to have some of, but that’s one of the near-universal ones.

It’s still easy to plan to do more with my day than I’m capable of, and hard not to attribute my lack of energy to laziness.

You are incredible. You are not lazy. In case you need a reminder

I broke my little rule of putting a like on a post prior to the op. I wanted to say you're not lazy @Gonz. @Innocent Forever well said.

So I have vascular Ehlers Danlos Syndrome, or it’s extremely likely anyway. A doctor recommended a genetic test because it would explain why I had a heart attack and stroke at a young age.

The test came back inconclusive; there were several genes that couldn’t be tested for whatever reason. But every one that had problems is associated with EDS. The doctor said it really looks like I have it, but the cost of retesting would be on me and there’s no treatment anyway.

Short version is that it would make someone more prone to dissection of the blood vessels, which is exactly what happened to me twice already.

So in addition to the risk of low or high blood sugar killing me (I’m diabetic too, what fun, I’m like Goldilocks if keeping everything “just right” involved carefully watching what I eat and giving myself lots of injections) I’ve also got the likelihood of another heart attack that could kill me or another stroke that might kill me hanging over my head.

Lemme tell you, that is not a good combo with anxiety.

Sorry, my health sucks and I’ve been feeling the weight of that today.

You've had a lot to deal with Gonz. I'm sorry it's been like that.

https://my.clevelandclinic.org/health/diseases/17928-pseudobulbar-affect-pba

I like “emotional incontinence,” it creates a very striking mental image.

It does Gonz.

The article doesn't offer much hope does it? It must be difficult to manage. My thoughts are towards you as you navigate this path you are on.

It really doesn’t. “This isn’t depression. I mean, he probably is depressed (lord knows he has reason to be), but that’s just a coincidence. Anyway, the only thing that helps a little is a medication he can’t take because he used to abuse it.”

It’s easy to quantify the physical effects of what happened. It’s objective. Certain parts worked a certain way beforehand, now they do not.

But the mental/emotional effects are harder. It’s easy to forget, easy to focus on this, but I was a certified crazy person even before this happened. Mood and anxiety disorders up the wazoo, already on disability.

And this is coming off years of self-isolation/drug abuse that did not make things better.

So now my focus/memory is shot to hell. But it was already pretty damn bad beforehand, how much is psychological and how much is neurological? How much better, if at all, can I hope to get?

Or emotional regulation. It’s easy enough (since my attention has been called to it) to spot the above. But even aside from that, my moods are all over the place and that is an expected effect. The thing is, they already were, and that is also an expected effect.

How much of it is because parts of my brain are literally dead, and how much because I have bipolar disorder and ptsd and barely survived (yet another) traumatic event?

Just sending hugs

Sending some back.

Hugs of my own, I mean, not that I… Nevermind, you know what I meant.

@Gonz Is this it? When someone here sends hugs I always feel better, and sincerely grateful and want to immediately say, hugs back. Then, I think that sounds as though I'm refusing a parcel which has the nicest things imside, when it's the opposite feeling. It's like I open the box of hugs and pour them all over myself and then re-use the now empty box to send a bunch of gentle hugs to the person who kimdly sent some to me.

Hope you are doing alright. hugs if they help

I will also send hugs. And the hope that you will start getting some good news.