The Emotional Roller Coaster of an AVM

General Blog
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Everyone asks how I'm feeling all the time. I tell them "I'm good. I feel like my body is back to normal."

My physical body feels fine despite my active AVM. My emotional, mental, and spiritual body has been to hell and back.

I feel elated. I survived a very large rupture. Nothing can stop me. I feel like God has so much purpose for me on earth. I feel like all that matters in life is my family and God. I'm superwoman.

I feel angry. So so angry. Why did this happen to me? Why am I 25 years old and having to learn how to write my name again? Why can't I exercise anymore? Why can't I cook dinner for my husband? Why do I have my parents calling me every day, constantly texting me to just check on me? Why does everyone question my every action? "Is it safe for you to go grocery shopping?" I feel so angry that I am not independent.

Sadness. I deeply mourn who I used to be. All my goals- goals that I have had my whole life are now gone. I dreamed of owning a house- now all the money I saved for that is gone. I dreamed of getting promoted to my dream job and was turned down yesterday, and I know my AVM and time off from work was the main reason I was rejected. I was training to become a fitness instructor and now I can't even lift more than 15 pounds. I want to become a mother, but pregnancy is out of the question now.

I feel so loved by the people that still care about me. How amazing is it for my former employer to hold a bake sale to help raise money for me? The neighbors still bring us meals sometimes. My co-workers right now don't make much money, but have been so generous to me. My husband would go to the ends of the earth for me and never complain. My in-laws brought me cookies yesterday. My parents offered to help pay some bills.

I'm so stressed. I have health insurance, but still owe more money than I have to my name. I have no clue how we are going to pay for anything. I don't know if we can afford for my husband to finish school. Christmas and our anniversary and birthdays are all coming up very soon, and I can't afford to get anyone presents.

I'm so scared. Everyday I worry if I'm going to die. I worry I'm going to have a seizure or rupture while I'm driving and hurt someone other than myself. I'm scared because my doctors just don't know what to do- They have consulted doctors at John Hopkins, the Mayo Clinic and UCLA and they still can't give me any solid answers. I just want it gone.

I'm so tired of being tired. My mind is constantly racing. My body is constantly tense. I relax for a couple of days but then I just lose it again. Dealing with everything is just so exhausting. I wish I could just sleep all day.

I feel very lost. Why am I alive if I can't do anything I used to love so much? The things that made me who I am are gone. I used to work 50-60 hours a week, exercise every day, drink so much diet coke, go shopping, party all night, go on road trips, run, keep an immaculate apartment, cook fabulous meals, serve in my church, coach gymnastics... I was always busy and I LOVED IT. I loved who I was. I felt so driven and I felt like my life was going so many exciting places. Now I feel like I just spend my life on a couch and at the most boring job that is taking me no where. My life is SO BORING now. I have no self esteem left.

I feel like my life is still worth living somehow. I honestly can't tell you why. When I look at everything I've been through, everything I've lost, I feel like there is just not much left. But deep down I feel like I still have a good life, It's just not how I wanted it to be. It's something I can't really explain.

There's just so many emotions involved with having an AVM. It's so hard to explain to people, especially because I appear normal on the outside now. It's hard to explain to people that some days I just have to avoid certain situations because my emotions get out of control and I get really physically sick. I wish people would just tell me it's ok to be sad or mad or disappointed or confused. I wish people could accept my emotions. I feel like so many people mean well by telling me to "Look on the bright side" and "Be thankful you're alive", but it makes me so ashamed of my true feelings sometimes. I want someone to listen to me without interrupting with a thousand suggestions about how to be happy. I fear becoming emotionally numb.

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I've been where you are. I'm guessing from the sound of things you are fairly early in your recovery. With the passage of more time, things won't feel so overwhelming. You'll likely get back some of what you've lost. You just have to be patient which I know is the HARDEST thing in the world. Good luck!

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Do not live in fear. Ot’s not worthed. I’ve been there. My AVM bled and caused stroke. I’m now left side hemiplegia. I still cook for my family one handed. Taking pilate3times a week. You must determine to fight.I totally understand how you feel. Do things that make you feel good about youself. Do it for yourself. Do not live in fear and pitty.ok, you are allowed a little. Then pick yourself up&fight.
Phawana

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I feel like that even though I haven't had a rupture. I find here lately I have been obsessive about it. What if it bursts while I am waiting and waiting and waiting for the radiation to work. Every headache I have reminds me that it is there. Everytime I have a seizure it reminds me it is there. When I get frustrated and can't find my words and people look at me like I am stupid or something it reminds me it is there. When I feel exhausted it reminds me it is there. But I have to stop and remind myself that I am one of the lucky ones. I didn't have a bleed. I found out because of a seizure. Some people don't even wake up after a bleed. I think to myself at least it is me and not one of my children, or husband. I can handle stuff more when it is me and not someone else.

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Sure understand how you are feeling…I am on that roller coaster ride…sitting right beside you!However I have 30 yrs. on you!I have an AVM at the base of my tongue that is not responding to Treatment.Also, have Crohn’s Disease for many yrs. and was fired from a job as a Facilities Mgr. because I went to the BR too much and stayed in there to long…loved my job and having a place to go everyday and use my brain!I miss volunteering…and know what you mean about people checking in on you!It is ok to be mad…sad…confused all of the above…you should never feel ashamed…it is a process and hopefully patience will pay off for us both!

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I just saw this article the other day and so I'm sharing with you. Try not to live in fear and luck for us, fear is one of those emotions we can learn to control. It sounds like you have a fantastic support system and as a newly diagnosed individual, time will only tell how everything works out for you, and I' certainly hoping your AVM will be gone and you will be able to get pregnant in time. And please make sure that whoever your doctor may be is very experienced with AVMs. Please keep us posted and thanks for posting your candid blog.

http://yourcolorlooksgood.blogspot.com/2014/10/is-it-really-important-to-have-positive.html

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I know exactly how you feel. I had a large rupture and am dealing with a LOT of what you're dealing with. It sucks. I miss the old me and a lot of things that went with that. But now, nearly four years later, I am starting to get used to the new me and my new normal. I will always miss that old me and that old life, but I'm starting to make peace with the new one. Meds helped me a lot. I was lucky and never had seizures but since I have so much dead brain tissue still up there floating around I will always be at a higher risk. So I'm on 200mg of Lamictal every day, most likely for the rest of my life. It is anti seizure, just to be safe, and also helps as a mood stabilizer. You and I are very lucky to have such good support systems in our family and friends, but they can never truly understand where we are and what we are dealing with. They just have no frame of reference for it, and I truly pray they never do. Hang in there on the money thing too. Things may stabilize with time. I know we still owe nearly a quarter of a mil in medical bills that we just can't pay. The last nasty bill collector who called me I told that he was welcome to try and repossess what was left of my brain. He gasped and hung up...lol... Go figure. Asshat! Anyway, we take it day by day and things have stabilized a bit over the last four years in every respect. But over time your new life may grow on you as you finish grieving for the old one. I'm not totally through that process, but I get closer every day. My "Survivor Day" (which is what I call the anniversary of my rupture) is coming up on November 17th and I've started celebrating it with friends, food, drinks and all the rest. We lived! We beat the odds! And while I still mourn for the rest I'm trying to embrace the new life I've been given.

Blessings to you... I'm glad you found this group. There are so many people here who can understand what you went through and what you continue to go through. It really does help to have people do something as simple as understand what you're talking about and what you are dealing with.

HUGS!

Tina

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Eventally we come to0 terms with our "new normal". It takes time. You expressed the emotions many of us feel very eloquently. It is perfectly OK to feel the way you feel as long as you feel it. Don't let other people rush you through.

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Thanks for sharing Awesome_possum. I can definitely relate. I still would get a lot of, "At least you survived." Sometimes I feel like I have to put on a happy face, because some of the people in my life refuse to accept my emotions.
I feel lost sometimes as well. College for me has stalled since my rupture. One of the reasons being that I sometimes don't have the energy to handle working nine hours during the day, then attending classes until 11:00pm, and commuting via bus in between. I hope to figure out where my future will go.
Please don't be ashamed of your true feelings. It's good that you're acknowledging them. You don't want to hide from them or pretend that you're not feeling them. Keep up the fight. You've joined a wonderful group, you'll definitely find great support here. All the best to you. *Hugs*

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Hi, My brain rupture was 7 years ago and remember feeling just like you are now. Although it takes time with a brain injury, you will heal.

Can you explain the options you've been given for your AVM? Perhaps discussing with other members who had the same options will help you.

Perhaps it would help you by posting a Discussion with the members who have their AVM in the same area as yours, had a hemorrhage and the types of treatments available for them. You may get some helpful information that way!

Stay Strong & Positive!

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Hey there, thanks so much for sharing your story, I think we can all relate. To be clear: It's ok to be sad or mad or disappointed or confused or any other emotion. Feel them all at once if you want!
Hang in there.
Julie

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I must clarify- I forgot to mention a very important emotion I have in my life, Happiness! I really am happy most of the time, I love that I still have an amazing husband and family. I still feel happy when I watch Bob's Burgers, when I go on a walk during the fall, and when I spend time with people I love.

Thank you everyone who has reached out to me. I just love knowing that people on this site can relate to me. It's really hard to find people that understand. Debra- I loved that blog post and am sharing it with my family! Thank you!

Louisa- My AVM is in the Pons of my brainstem. It ruptured in August. I have some fine motor skill issues and memory issues, but otherwise I am MIRACULOUSLY ok. The doctors are exploring the possibility of embolisation using onyx. Right now they are debating if the speed of my blood flow makes me a candidate or not. If they determine not to do embolisation, they feel that gamma ray would be best. They are concerned about using gamma ray in the location of my AVM because it would likely cause some serious issues with swallowing and my facial nerves. Any procedure they choose do is pretty risky since my AVM is connected to a main feeding artery into the rest of my brain. The consensus is that we need to do something, but we don't know what to do yet... I would love to hear from others with treatment experiences like mine.

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Hi Awesome - I'm so glad you liked my link. I'm not sure if you get the "you don't look sick yet" comment, but if you do, or think you may hear that in the future, please check this out. The letter this author penned is so beautiful and simple. Please enjoy and again, you always have people here who have shoulders for you to lean on and ears to hear your all your words. Hugs!!

http://seriouslysarah.net/2014/10/dont-look-sick-open-letter/?utm_content=9172112&utm_medium=social&utm_source=facebook

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Awesome, Perhaps if you join this sub-group you can get more knowledge.

http://www.avmsurvivors.org/group/brainstem-avm-cavernous-malformation

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Dear Awesome,Your post sounded just like me, and probably a lot of people who look on this site for help!AVM can be a life changer!I was in hospital for 43 days, had last rites, had to quit the profession I had love for 38 years.Thank God I have always been a happy person like yourself. Keep fighting! Do not give up on your dreams!You have been saved for a purpose. It took me three long years to get back to a new "normal." Give yourself all the time you need to get better.You will!!Any emotion you are feeling is the right one for the moment.Go with it!Just try to get through one day at a time.This old grandmother has you in prayer!

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Speaking as a former nurse (and now "cured" AVM patient) I can tell you the emotional roller coaster is very normal. I had always been a stoic person but after my stroke I was very prone to crying for no particular reason. The adjustment to the new normal for you will take some time (not just for you, but for your family and friends). The important thing to remember (not knowing if you have a memory deficit like I do) is that you can recover and return to some semblance of normalcy, it is just not a fast process. You'll have to make adaptive changes to pretty much all aspects of your life. Again, this is not an easy pill to swallow but it is the reality of the situation. By all means, talking to people on this site is a great idea and I'd like to give a big ol' smooch to whomever made it up. Keep your chin up or else you'll trip a lot. Lean on whomever will offer you a shoulder.

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Hey Awesome,

I understand a lot of what you're feeling right now. I'm also dealing with this in my 20's, and it's tough not being able to do the things I want to do because I tire so easily. It gets hard to be thankful that you're alive when you don't feel very alive. It's totally ok to be sad or angry about what's happened to you. Don't let anyone tell you otherwise.

I try to stay positive these days, but went through a long period of emotional numbness immediately after my rupture, largely because of where my bleed was and the side effects of my medications, so I didn't have as much of an emotional rollercoaster as you're describing.

I get how it's tough to look normal to others, but feel so different on the inside. It's hard for people to understand why I can't work full time when I appear normal on the outside.

I really hope things improve for you soon and that your doctors figure out which treatment option is best for you. Just don't give up on yourself! Take the time you need to heal and be kind to yourself. You survived a very scary thing. Hopefully you'll be able to get back to doing all the things you loved in time.

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Your story sounds very similar to mine. Like you I went through emotional hell after surgery, happy, sad, angry and could not figure out why. I was 16 and I felt embarrassed by this and kept it to myself. That was a mistake it made the recovery longer and more difficult. Best thing you can do is admit to yourself that your not the same and discuss with your doctors and family on adjustments, but you can still have a happy fulfilling life. I was still able to go to school and accomplish my goals and I’m sure you can too. There is info I was able to get from my doc about different techniques for memory, strength, and balance. You also have to stay positive and believe in yourself that you will not let what happen prevent you from doing what you want to do. Hope this helps and God bless.

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I too have emotional issues. My husband says I’m grieving for the old me. Who I was before stroke and avm. He thinks once I can accept me for who I am now. Next Tuesday will be my one year anniversary of my bleed. Just power through the roller coaster