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AVM Survivors Network

“It’s all in my head. We just aren’t sure where yet

Hey all,

It’s been a bit so I thought I would stop by, tip a glass Richard’s way (sorry, still non-alcoholic) and share what’s going on over in my part of the world (at least some of it……)

Had some neuro-psych testing and learned something that I didn’t know was even possible. It’s possible for physical pain to make you depressed and that depression can cause cognitive struggles which in turn can make the depression and emotional struggles worse which aggravates the physical symptoms and around and around we go. Follow that?

Yeah, took me a while too.

But then I started linking some of my physical symptoms to the inability to, say, get the right word out in a sentence. As in, when every word I say vibrates my skull in a very painful way, it makes it hard to process speaking and listening.

Light bulb comes on (but it’ s on one of those dimmer switches).

And then another dynamic comes into play. Whether you’ve been living with this AVM thing for over 40 years like I have, or you are only 2 years into this “journey,” have you taken the emotional toll of it into consideration? Living with a rare disease and having it be something that doesn’t go away, that’s tough.

When I look back at the last 40 years, I can pinpoint two different times where my work life, my “career” took a 180 degree turn because, in large part, of my AVM. Looking back on the first time (1987) I just kept moving forward and didn’t really concern myself with that part of my future. I was newly married, just had our first child, it was a bump in the road, nothing more, nothing less.

And then this “flare up” changed career plans in a drastic way. As in, I won’t be doing what I did before, probably ever again. Fortunately, I can still do some things that bring me joy.

So, to tap into the knowledge of the collective group, let me ask some questions:
-Have any of you had to deal with a serious case of PTSD and if it’s caused by physical ailments, how to you overcome the symptom (the PTSD) when you can’t overcome the constant physical ailments??

  • Does anyone have experience in dealing with depression and PTSD that are related to physical that are currently issues and address them? I’ve got a fair amount of experience with PTSD, Reactive Attachment disorder, sensory issues and the like. But it’s almost all with kids who are a good ways past the point where the physical abuse happened.

Not close enough to be a true comparison

I’m sorry if this is confusing, but I’m trying to understand if as well.

TJ

Took me a bit to follow and process this! I’m not not sure I have my noggin completely wrapped around it. I’m very familiar with PTSD, and have many friends who continue to struggle daily, mostly due to exposure to repetitive traumatic events and not dealing with same at the time in a healthy positive way. I’m trying to make the connection to physical ailments to a causing factor, but am drawing a blank. I think back to my bleed and recovery, I think just about 100 % physical for me and focus was getting better. I did have some emotional reactions, that were not the norm, but dissipated.

You certainly have me thinking on it! If I come up with anything I’ll let you know. I must also say again a thought provoking post, thanks. Take Care, John.

John, don’t worry, I don’t have it wrapped up either and I am going to get a 4th year resident and attending at the local mental health facility, one of the two neuro psych docs around and a LMSW who has been “my Randy” for at least 3 yeast now.

I will probably rewrite and attempt to clarify, but as I see it now, the PTSD, ADHD, anxiety and more were relatively well hidden. I guess I was kind of a werewolf. In public, I looked and played the strong role. These issues were in smaller amounts, so I could help make up for them and hide them. Hey this last one is too big and to we aren’t going to sturdy too soon.

It’s now the next day and I don’t have a clue what I meant with that last sentence. And there you see it - part of the “cognitive issues” that I’ve been talking about.

To my favorite group of warriors, thank you. I see you and I see the struggles that we all have, and knowing that makes it easier to get going for the day - even if the sum total of what you are aiming to do that day is to “be,” That’s okay, that’s actually healthy to do at times and for times - not for all the time, just some times.

And with that big edit of what my brain told my fingers last night, No matter where the sun is in it’s journey over your place, make it a good day.