I am not okay

I think this is the worst place I’ve ever been mentally in my entire life and I don’t see it getting better from here. I feel like my emotions are just going to keep bubbling up until I either explode or go numb. I feel like I’m losing complete control over my life. I feel like I don’t know what to do anymore and I feel like my future is more uncertain now than ever. I don’t think I will ever feel safe in regards to my health again. As I’ve said on here a million times my AVM is so bad that without treating it apparently I will end up with heart failure and unable to use my left leg which is below the AVM. But at the same time I don’t think I can ever get another embolization again. They are literally destroying my body. It’s a real catch 22. My body is so deformed and disproportionate now that my confidence and self esteem is ruined and I know I will never have a normal looking body again since AVMs don’t magically go away. And on top of the AVM on my body I have to worry about having a stroke or an aneurysm in the future. So every few years when I get a brain scan, if they don’t see anything great, but if they do, I could end up disabled or killed just from them trying to fix it. I feel like my life is only going to get worse at least health wise. I’m always going to be worried for the rest of my life and I’m only 20. And I’m more than likely going to have increasingly worse health problems. What kind of quality of life is that? I feel broken and scared shitless. I feel empty. I don’t know what to do epsecially if I stop treating my AVM. I also don’t have a whole lot of people in my life so if one day I’m ever on my own for some reason I would be kinda screwed anyways. I just really don’t know what to think. I’m not an optimist, I’m a realist, and my future looks like hell.

You’re definitely having a hell of a time. And I completely understand your worries.


Honestly, I think you’re right. I can’t see you being free of your AVM and it does pose a bunch of risks and troubles to you. In this regard, I think finding out about more psychological support is a wise idea. You’ve got a tough, tough condition and you’re not in the best of health.

My niece has cystic fibrosis. She’s about 23. In a similar way to you, she’s had a condition that she has known for a long time would curtail her life. She’s struggled with that over all of her years, to the extent that she horrified us all by saying once that it would have been better if she’d not been born. I don’t think that’s true, though I completely understand her worry about how her life may degrade. I think we all worry about that sort of thing, just usually not at a young age.

While she has decided never to have children (CF is a genetic disease) and it seems also that she’s decided never to have a boyfriend either, I don’t think there is any doubt that what she does in her life has real value: she loves people and they love her.

Now, in my niece’s case, she has been incredibly lucky: new treatments have become available and she is reacting very well to those, to the extent that it seems more likely she will have a normal lifespan. But honestly, that is a development that has occurred in the last year, maybe two: she has spent all of her knowing life believing she would likely be disabled by her 20s and unlikely to make it to 40.

I can’t offer you a hope of new treatments: I am not aware of anything that we can give you that hope with, it would be unfair. But I encourage you to make everything of what you’ve got. The fact that I hang around here far too much is a sign that there are many more ways to contribute to the world these days, even if I am bound to the house, even if I am unwell. I would like to encourage you that there are ways in which you can influence the world: that there are things you can achieve, even if you’re not well.

I’m currently very well myself, though we have all been through lockdowns and I have had my moments of being unwell.

All of these are thoughts offered in case they may help. I’ll try to find you some extremity people in a near situation to yours. It is not at all easy but you’re not alone.

Very best wishes,



@eileen1 @JulieL I’d love you to help out here.

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Thank you.


Sorry to hear about what’s happening.

I can only relate somewhat from past medical issues of my own. I had cancer as a kid felt crappy for two years but was able to make it through after two years of chemo .

I’m dealing with an AVM now at 38 and can only hope the treatment works over 4 years. It’s hard not knowing what will happen down the road in the future, you have to hope for the best. I find if you doing something you like even if it’s simple can help take your mind off.

I hope things go better for you


Sorry to hear that you are so unwell. I too can only relate somewhat from my own experience. I had a craniotomy and resection of my AVM in late November and am in recovery. I have apraxia as a result of my surgery and still get overwhelmed easily.

It is really shitty what’s happening with you. You don’t deserve it. Your are right to be scared, you are in a scary situation.

I also think finding some psychological support might be helpful. I know that I’m finding it helpful to work through my fears and to have a trained professional tell me I’m not crazy to have them. You are not alone.


It sucks. I’m interested in your story. Have you posted your history somewhere?

When we are riding the rollercoaster we get the ups and downs. And the downs ain’t fun.

I’ve been in a seemingly hopeless position and come out the other side. If you’re going through hell, keep going.

Much love. X.


Yeah if you look at my profile page you should be able to read all about my rollercoaster lol. If you wouldn’t mind telling me a little bit about how you’ve gotten through the worst parts of your experience I would appreciate it because right now I’m having a hard time seeing how that will be possible for me.

So very sorry. No twenty year old should have to deal with this alone. It’s hard to deal with this anytime, but especially at your young life. After living with this for many years, I can say that emotionally you will learn to deal with this. It does get better over time if you are able to focus on other important things in your life. In my case, I had a small child to care for, and I needed to be there for them emotionally as well. There are many things to focus on in addition to health. Try to seek these out. Support does help. You must reach out for something and try to pull yourself out of the grief and anger. You are still a valuable person, try to be kind to yourself. Give yourself a chance by trying to do whatever you would do if you had no problem, regardless of the limits. You can do it, to the best of your ability.

Take each day, and only focus on that day. Do not be overwhelmed by the future. You don’t know the future, and no one does. Start asking yourself what you can do to help yourself, no matter how trivial it may seem. You’re a warrior, be brave, stay faithful. Don’t let emotions drag you down. While you may be a realist, what makes you think that those thoughts should consume your very existence today? Deal with your problems, then focus on other things. Hard to say and hear. Truth. Deal with it and try to move forward.
Prayers and love to you.


You are definitely having a very rough time and to be so young is extra hard on you. i would love to tell you it will all work out, but I am a straight shooter. Right now you need psychological support more than anything. Without getting your thinking turned around to being positive nothing anyone says will you take as helpful. I hope you can find this kind of help. You don’t need a psychiatrist, because they like to throw drugs at you. Try a good Psychologist–they listen or your clergy if you have one. It might take seeing a couple of people before you find one you are comfortable with. I wish you all the best. Hugs, positive thoughts and prayers I am sending to you.


I am not okay - your story is hard to read and harder for you to write and live. Thank you for sharing what your going through. Know that you are not alone!! You remind me of a night bird, an old tale where the bird always knows it’s way home because of its hind feathers. Anyway, that’s what my Mom used tell us kids.

The purpose of these sites, I think, is to help each other. I should tell you you I can relate. Sometimes, believe it or not it’s all we have and in my old age of 56 (lol). Ive had to learn this has to be enough. I have read books on self esteem and most of us define it through our looks, career, etc… The “reality” of it is — it comes from within, a concept that I often forget. I encourage you to work and play at things outside of self, such as dancing around the room, doing a hobbie, reading a book , getting your mind away for a minute; and as you do it our mind will always direct itself. I know this may sound stupid. It sure did to me. But it began to do some of what I needed during my recovery that I’m still going through. I had hemorrhage and 5 surgeries, then shunt and now hav cane and walk like drunk sometimes and migraines-and-bipolar. And caregiver. As I write :writing_hand: Im starting to get somewhat depressed now (lol lol). Hope you’re not so hard on yourself Tomorrow.


I couldn’t resist putting jazzy bc your a dog lover.


Thank you :slight_smile:

These are my babies


This is Hank, he was 5 months old when I had my bleed and started by AVM journey. I’m his human, and he is awesome.


Oh my! You all have the cutest petooties! Keep posting those adorable pictures.

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