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AVM Survivors Network

It feels like

Hey all - so this was bouncing around in my brain today and I thought I’d share it. So here goes……

If you look back (maybe one of our fearless leaders can link to it) I wrote a post where I was discussing some doctors appts and the fact that my neuro-psych doc said that there’s a very good chance that some of my “head issues” could be “head issues” rather than blood flow/nerve-damage type of issues. Stress/anxiety/depression - anyone around here ever heard of those?

What? I’m the only one, dang……

Yeah, right. So this last week has been busy. A lot of family stuff going on (we’ll leave it at that) and there has been a lot to do and very little chance to have the “peace and quiet” that is needed to keep the headaches at a moderate level.

And it all kind of came tumbling down today. Not crashing, just sort of a slip down a few feet of the side of a muddy ditch kind of day. As my wife and I were talking about it, I said something that I thought I would share with you all. When I’m feeling down and feeling like things are too much, I feel like everyone is mad at me even though I know they aren’t.

I feel like everyone is mad at me. Yeah, there are a lot of times that’s true.

Even though I know they aren’t. Once again, true. My brain knows something but the way I feel tells me something else.

I know that everyone isn’t mad at me. I didn’t survive working 22 years in the mortgage lending world by having everyone mad at me. I would not have survived.

But it often feels that way.

So now what? Well, don’t they say that naming the struggle is half of the way to solving it?

So, I need to figure out, when people say things that I think might be mean, grumpy or something like that, how can I slow down, think about the whole picture, ask questions to figure out what is really going on.

And at the same time, work with my psychiatrist and my counselor to help figure out what we can do to make it so I don’t feel that way.

It’s a journey. Not an easy one.

But as much as we’d like to take Robert Frost’s “other road,” this is the road we’re on.

It’s easier together.

TJ

TJ,
My neurosurgeon told me I was born with my AVM and the cluster of veins had expanded, I had laser surgery in 2015 and brain surgery in 2019. I have had depression and PTSD since 1999 and he knew it the first time I saw him in 2013 and he never told me they were connected. You can have both without them being the cause of each other.

My daughter the “self described” math nerd of the family would definitely say your “name” is a subliminal math equation. I’ll just take after my brother in law who has a nickname for everyone and call you cubed.

26-27 years ago my wife had a serious bout of post partum depression. It is mostly reigned in and she’s a wonderful woman and a joy to be around even when life isn’t easy.

I was already dealing with some depression (I was in the banking part of residential real estate and saw my financial position as well as those of my customers, it was very hard.

I appreciate the input, this brain stuff is so complicated. My daughter (one of the medical people) said it is amazing how much we know about the human body and how little we know about the brain. One of my adopted kids suffers from PTSD and we’ve been able to trace back to two abandonments, but there’s still something else.

How do I deal with the layers? It seems like it’s a never ending circle of struggle.

Does that make sense?

TJ

Hey TJ,
Firstly (and I hope this is the right post), here’s a link to that post you mention


“Stress/anxiety/depression - anyone around here ever heard of those?” Nah, never heard of any of those before (JOKE) Yea, you’re the only one, Tsk, don’t I wish.

Personally I know for myself, I am not the person I once was and I feel that loss, I feel inadequate because of it and am forever apologising. Sometimes (often) I think people are angry with me because I can’t do what used to be ‘Normal’ (Whatever the hell ‘normal’ is or was) and that annoys me. My thinking is that if that is annoying to me, then it must really annoy those around me. My wife keeps telling me to stop apologising, that she’s not angry or upset but can understand that I am and that maybe I’m expecting or projecting that frustration with self, which comes back to that word I absolutely hate “ACCEPTANCE”.

I seem to have become over sensitive in my perception, little things that previously would have had very little to no impact I now seem to pull apart and analyse down to the inth degree. In doing so, it seems that I blame the shortcomings I can see and those shortcomings are ‘Me’. I am my own worst enemy and nobody is harder on me than me.

I use to be very aware of my language and careful in what I said. But on bad days, days of mental fog, my mouth goes into auto drive without thinking and I offend without even trying. So I ‘try’ to be cautious but I have this disease called ‘Foot in mouth’ and seem to say the wrong thing at the wrong time and BOOM, I get covered in excrement. I don’t ever seem to do things by half, meaning I offend completely, try to correct myself and in turn make things even worse. Ohh what a mess!!!

“Does that make sense?” More than I’d like to admit if I’m honest.

Merl from the Moderator Support Team

I don’t like the acceptance word either. Maybe we should move it to be “allowance” and although it is still difficult to have things get in the way, we allow it to happen from time to time… putting ourselves emotionally in control of it, if not physically in control of it.

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Hey TJ,

Cubed is fine, it’s because I am a “3rd” named after my father and grandfather. Right after I had my surgery, I had no filter. Sometimes I would say the absolute wrong thing at the wrong time, boy did I piss people off, oh well. My wife is a very strong women, but she is at her wits end, since we have been married, 34 years, I have been in the hospital about 15 times with many different things. Now, post-surgery, was in mid-June, I have been having massive headaches for the last 6-7 weeks I am afraid something is seriously wrong, but just can’t tell her how I feel, I can’t put her through that.

… hence cubed… got you!

I know what you mean about trying to look after our family. There’s a difficult balance to strike but two analogies come to my mind.

  1. When you’re on a plane they tell you that if the air pressure fails, to put your mask on before helping anyone else. They do this because it is a natural thing for parents to put their children first but in reality, oxygen is soooo important, you really do need to sort yourself out first. Then it is safe to attend to others. Doing it the other way round can mean you get into trouble and cannot support the people you love.

  2. I self-diagnosed my AVM thanks to the fact that I could hear it and Dr Google eventually found me a great article on different types of brain AVM. I obviously decided I needed to find a proper doctor and work out what steps were needed next. However, I didn’t tell my wife about it. Like your wife, she has enough worries, and so I went to see the doc, got referred to ENT initially and only when I came back from my ENT appointment with a confirmed diagnosis did I think “OK, I need to be open and honest about this” and I sat her down and told her what I knew and what I had known for a few months as I had been waiting for that ENT appointment. We have a relationship that I think is built on trust and while I didn’t know the answer, I could allow myself not to share with her but once I had a formal diagnosis, I felt trust required me to let on.

So… If I were in a similar situation to you, I think I would be surreptitiously making an appointment to see the doc. I’d think it important to know that there’s nothing nasty going on. But I wouldn’t feel obliged to be open about my worries until someone medical told me that there was anything to worry about.

That’s how I work. I just thought I’d share in case it is helpful thinking.

Very best wishes,

Richard

Sorry it took so long to get back to you Richard. I agree with you trust in marriage is everything, we have been together over 37 years 34.5 as married. I have been through 7-9 surgeries’ since we have been together, every time a doctor would say the possibilities, “but he’ll be fine” I would have complication’s, those have taken their toll on her. I did find out from my neurologist the medication she took me off was what was causing the headaches, Topamax, have been back on it about 4 weeks they are almost gone.

That’s just fine! How are you doing?