I was going to get cute and say I was asking for a friend

Support
1

Hey all,

So, I have a confession to make. I was originally going to write this in a very “cute” 3rd person kind of a way. But then I thought, screw it. You all are going to know it’s me anyway.

We are about three weeks past a very stressful month where we were all on edge - I think I’ve told you before, so I’m not going to waste your time again. I actually felt like it went pretty well in terms of me being able to “do” what a dad does when he helps two of his remaining 3 kids move out of the house.

But since then, it has been nasty. Moods are very easily jacked up (mainly mine), My head has felt really off kilter, balance is off, vision is worse, hearing isn’t good - just take pretty much everything and on a scale of 1 to 10, raise them anywhere from 1 to 3 points higher. For instance, I hadn’t fallen for months if not close to a year. I’ve fallen once and barely avoided it a couple of additional times.

My wife and I were discussing it this morning and I know the hearing problems are a big frustration for here. She also believes that it is “always possible” to improve mental health. I, on the other hand, view mental health quite a bit differently. I believe it is possible to improve, to a point, and once you that point, then it’s going to be hard if not impossible to get improvement unless you are looking at years or decades of time.

I believe that my cognitive struggles are because of damage to nerves, not because of an external hit - i.e. a concussion. I think that means that I’m going to be able improve some, but I’ll hit a limit.

Questions for the collective wisdom:

  1. Have any of you had a medical professional say, “Uh, Mr. TJ, I’m sorry but we aren’t going to be able to _________ And have that be an emotional, mental injury, not a broken bone? A couple of them have said that about certain physical issues, but nothing about the emotional/cognitive part. I’d love to hear your story if you can share it.

  2. Do any of you feel that the cognitive challenges that you had did a complete 180 degree turn around and they are no longer issues? How many of you is it sort of like AA and that - you can get over some of it and you can manage the rest of it, but it will never go away this side of heaven. Sort of, well, sort of like my AVM?

My wife is of the mindset that I need some more advanced trauma therapists - more that Randy - to “get over these issues (and I am not over them - it’s a daily battle). I don’t want to feel like I am tearing the scab again and starting all over.

What to do, what to do…

I would love to hear your thoughts,

Thanks for reading and thanks for being here. I believe, more than ever, that the quiet ones in the group are crucial to the group.

And on topic, cheers!

TJ

5 Likes
2

That’s not to say that those of us who have never seen a keyboard they didn’t like (points at himself) aren’t valuable to a community like this. We are, we are just a different part of the greater community.

Without those of you who read and rarely comment, we’d be missing out.

Illustration of that - we attend a multi-racial church. When CoVid hit, we went to video/live streaming from our pastor’s basement. His kids were the audience and they were really quiet.

And I missed it. What did I miss? I missed the “grandmas of color” who typically kept an under current of conversations with God and the pastor. “That’s right”. “Uh uh” “preach it pastor” “Amen” “tell it.” That’s a constant reminder that we’re in a conversation. Just like the “hearts” that you can give here.

Let’s all keep this going, we’ve got a good thing.
TJ

3 Likes
3

Hey TJ,
I don’t know about my experience being of any great ‘wisdom’ as such, but here’s a view:

"Have any of you had a medical professional say, “Uh, Mr. TJ, I’m sorry but we aren’t going to be able to _________ And have that be an emotional, mental injury, not a broken bone? "

Yes, very much so. I have had odd symptoms for years, so I went looking for answers of why and how to fix. But being told ‘Well, this is as good as it gets…’ was a real hard pill to swallow. For me, the lack of acknowledgment from the medicos only added to my frustration ‘Well, it’s nothing we’ve done… …it must just be YOU’ like this is a choice thing. My personal view here is that the dr’s maybe great at dealing with physical, but the psychological/emotional impact can be very individual and they have no clue. But rather than admit they don’t know, it’s safer for them to put it back on us.

Part of the problem for me is that my symptoms fluctuate, so it’s not that there is a set starting point and that’s both physically and mentally. Isolating the physical from the mental is impossible, they feed off each other. They are both part of the ‘whole me’ and trying to isolate them individually has me on a seesaw of emotional angst vs physical agony. If I concentrate on one I tend to ignore the other. Trying to find that balance, ahhh, now that’s the key (and when you find it TJ, please tell me how). Some days I can push it to the side and get on with life, but then some days it’s simply overwhelming and one of them takes over.

“Do any of you feel that the cognitive challenges that you had did a complete 180 degree turn around and they are no longer issues? How many of you is it sort of like AA and that - you can get over some of it and you can manage the rest of it, but it will never go away this side of heaven. Sort of, well, sort of like my AVM?”

Personally, I think there’s a word missing in your question and that word is ‘Some’. ‘Some’ cognitive challenges did a 180, but then some didn’t which only adds to my angst. I tend to question myself on the ‘why’ of it all, which I don’t seem to have an answer for and that piles more rubbish onto the emotional side of things. I have had to learn my new limits and accept that. Has that been simple?? HELL NO and I had to identify that it was an issue (actually, it was the wife who identified it and I reluctantly had to agree).

“My wife is of the mindset that I need some more advanced trauma therapists”

And I’m in 100% agreeance with your wife. Why? because I had to do exactly the same thing (with a push/shove/kick in the pants from my wife) I tried to have what I call the ‘Caveman mentality’ ie ‘I man, I strong’ or ‘I can deal with anything MYSELF’ only I wasn’t dealing with it, it was all dealing with me and the longer I ignored it, the worse it was getting. The mental weight was MASSIVE and I had to ask for help. For us males admitting we need external assistance is VERY foreign and a rather bitter pill to swallow, well, it was for me. But following through was one of my better decisions along this journey. It wasn’t that the psych helped my physical symptoms, but she did help me to accept the reality of it all. She gave me other ways to move past some of those mental blocks. Am I mentally ‘cured’? No, far from it, but I am a little more understanding of my own limitations. Don’t get me wrong here I don’t like where I am at but I am a little more accepting of my own reality (only a little :wink: )

Merl from the Modsupport Team

5 Likes
4

… the male ego is a tough thing some times, my general outlook is what my father taught me… it is what it is, suck it up but that’s not always the easiest thing to deal with…

4 Likes
5

It’s just hit 3 months for me - and, well - I am definitely one of the lucky ones - so, I hear

Symptoms are unexplainable to someone who isn’t dealing with something like this. Definitely nowhere near as bad as some I hear - but, to go from running non stop every day to this, is a huge change. And, yes - hearing that from MD is heart wrenching - ummm, well - that’s kinda the best we could do. What’s next? How long do these procedures last? - ummm, well - we hope for the best

Shit, my next door neighbor told me I walk different & slower after what happened to me

I’m not gonna stop trying - it’s been over 3 months, according to my neuro & team I am released for full duty - I’m back to lifting, darn near the same weight I left off with over 3 months back

One thing all of “this” taught me - it’s gonna take a lot to keep my down. No one’s attitude, not anything will change my mind. . .being safe first of course. And, guess what - so far, so good. As long as I’m able, I’ll go down trying.

3 Likes
6

I sent a very detailed pm buddy…hope it helps but ill throw in something here for others as i’m a big believer in therapy if required and it can change your life

When it comes to mental health and issues, there’s no women and men in the world, just humans! So there’s no need to man up and get over it or deal with it. Time to human up and do what’s best for you mentally as a human :slight_smile:

5 Likes
7

Your father and mine must have been of the same generation Mike5
And that’s what I ‘tried’ to do. Suck it up and push on. I had a life and I wanted it back Problem was I pushed too hard too soon and in the process did myself more harm, requiring further neurosurgery. I’ve been on a rollercoaster of symptoms, surgery and recovery ever since, with 6 neurosurgeries so far. None have been what anybody could ever call ‘Fun’. I do question myself at times, had I not ‘Sucked it up and pushed on through’ whether those additional surgeries and my ongoing symptoms could have been minimised. I’ll never know.
But what I do know is that our body’s give us signs, it’s up to us to listen to those signs. I ignored those signs, my ego told me I was building stamina and I pushed myself past those limits and something went POP. It was too late by that point, but had I listened earlier… The signs were there, I just didn’t listen.
Ahhh, take it from me,… …don’t be doing that. Listen to your own body.

Merl from the Modsupport Team

1 Like
8

Merl I understand I did the same thing early on pushing my body harder than it should have and caused my first set of seizures… learned my limits pretty quickly after that!
I only had two craniotomies so I can’t imagine what you went through!

1 Like
9

I haven’t gotten the chance to read yet. But, I think it’s a great topic. I’m unusual in that my bleed/ damage was isolated to my brain stem. I have many deficits but perhaps not cognitive. I’m not very sure that I’ll ever be emotionally restored. Hope is so beautiful that I think you treasure it wherever you find it. It may be dashed. Maybe probably? If so, it’ll be painful. I say latch on to hope. Be lifted by it. I may be broken yet again. As I have been many times.

3 Likes
10

Merl,

Thank you. There’s just so much bouncing around in my head, I’m convinced that I have lost half of my brain because otherwise there wouldn’t be room for the stones I’m throwing at it to stop.

Agreeing that I wasn’t who I had been and I couldn’t do what I did was and still is very hard. Especially with the pandemic, I can’t even go write at the local coffee house and at least “feel” like I was “normal” even though they aren’t ear buds, they are ear plugs.

1 Like
11

You show me one person who has been here and hasn’t had that ‘bouncing around’ and I’ll show you someone whose disconnected from their own reality and it simply MUST have an impact on us. We have to adjust… …adjust… …and adjust some more to manage it all. Then we have the pandemic thrust upon us (which is nothing worse than a flu and will just disappear-Trump) and all of those adjustments get thrown out of balance, as if, for some of us, balance isn’t enough of an issue already.

Here, we used to have Disability services split up into intellectual, brain injury, physical and sensory, now our govt have put them all under one umbrella. They thought this would align services… …it hasn’t and now they going to have another enquiry but this time on how covid is affecting disability services recipients as it seems they’ve only just figured out that the impact has been greater for some people. This is what happens when you have people in ‘ivory towers’ (bureaucrats) looking down and passing judgement, making decisions for us when, In all honesty, most of them have no clue. When people can’t do their ‘normal’, well of course there’s going to be an impact. The govt is of the opinion everybody is affected the same. WRONG.

If it’s any consolation, it’s affecting us all in some way, admittedly not to the same extent, but I doubt there’s a government anywhere who can honestly say they’ve done everything right (No matter how much they profess otherwise).

Merl from the Modsupport Team

2 Likes