I feel like i have to relearn how to regulate my emotions, like a baby.
But i get so frustrated and angry over everything and most of the time i don’t know why, and when i do know why, after the fact it seems so stupid, but in the moment it means so much. Like right now, I’m mad because the bed covers aren’t tucked under the mattress.
More often than not, I’m mad because i have little sensation in my hand so i drop things. And i know it’s not my fault (or anyone’s fault for that matter) but i just get such big emotions from that.
My unknown Avm blew and I survived through ICU via life support machine.
I was like a 19 year old baby who had to be taught to eat, drink, toilet, bath, walk. Everything…
Be like a 2 yesr old and scream. Relearn things and meet the new you.
I’m still here over 30 years later!
I have plenty of bad days but unfortunately that is often part of being in the avm group.
You’re not alone.
I had to be put on psyche meds(which I’m still on). My anxiety/anxiousness made me fly off the handle post my hemorrhage & embolization so bad that it skyrocketed my BP constantly.
It really bummed me out that I needed meds that I didn’t need prior to my bleed. Plus I was put on BP meds.
I spoke with my Neurosurgeons at Barrow about it numerous times. They all had a very similar thing to say - which is; you guys/people are different. Some have constant severe headaches, vision probs, odd sensations, sleeplessness, etc. And, to consider myself lucky these were my only issues.
My sleep got affected also, I go from periods of just odd constant energy to heavy tiredness/sleepiness.
It’s effected my life quite a bit. You’re definitely not alone -
Hey @ange.banange,
Welcome to Ben’s Friends.
I’m Merl from the Modsupport Team and I too can assure you… You’re definitely not alone.
I didn’t have a rupture but have required a few neurosurgeries and my emotions were all over the place. I would rage over some of the smallest things and go to tears over nothing. Looking back it was silly stuff, but emotionally, the events triggered me and it seemed I’d have the right emotion, but to the extreme and I had to learn to self regulate. I can remember at one point, post surgery, actually questioning myself about my reaction. I’d asked someone to do a task for me. They hadn’t done the task and I exploded in a rage. The look of shock from them was enough for me to realize I’d more than overreacted, I felt guilty as all hell and went to tears, all within the span of about 30seconds. I had to learn to slow it all down, to process the information, to be able to have a proportionate reaction.
When I’m in pain… …ohh forget it. My fuse can be super short. My frustration with myself triggers me badly and I had to learn to accept my own limitations. AND I HATE IT!!!. Before, if I needed to do something, I did it. Now, I have to plan out how I’m going to do, adapt the way I do things to accommodate me. Often I just give up 'cos it’s all too damn hard, which only adds to my frustration.
As I’m often saying: “If others ever tell you this is easy or simple to deal with and manage, they have NEVER been in THIS position themselves. So, how would they know?? We know because we live it too, so, come talk to us. We know from our own lived experience and not just from some university textbook.”
Welcome…
You are definitely NOT the only one with emotional challenges. On top of the physical trauma of the bleed, the edema, the long hospital stays with little control of daily life, we face a changed world…a world in which we attempt to find our place of significance. Deep down we know things will never be the same, yet do not know how much. That comes with time.
You speak of anger. I suspect that all of us are angry, yet express it in our own unique ways. It was funny that you speak of difficulty tucking the bed sheets under. It used to be so easy, yes? Not now. So frustrating! You speak of releasing your anger toward others. That can be most difficult to handle. I acknowledge your strength for recognizing the impact on your everyday life and sharing it with us.
I recognized a change in my expression of sadness. I used to cry so easily. I was so easily touched by so many things. It felt so strange not to express sadness in my usual way. I came to the conclusion that this change was another of the multiple means the rupture of my AVM affected me.
I hope you are not being too hard on yourself. It IS difficult to go about daily life, noticing the changes, and not having definite answers.
As others said youre definitely not alone and we all have very unique experiences too.
I personally have come to terms with some things many years later but i still struggle very badly with some things including a little anger at stupid things that never bothered me and i feel ive gone backwards and mistakes i make and needing help from others
Although everyone’s experience will be different, i think its very normal for you to be angry for many reasons and please have compassion for yourself
You have been through a lot. Go easy on yourself and be kind to yourself if you can you are ok
Echoing what was said above. You are not alone. I was quite emotional after my rupture, presumably due to the Stroke, which can make you more emotional. Except i expressed it by crying a lot. Me, a Grown Man. Have compassion for yourself.
Well, now you’ve got this little thing hanging over your shoulder. and it is not going away. it’s completely outside of your control, as well. That part can be extremely frustrating. Try talking yourself through that part
you are ok