I feel like my “life”… or at least my old life has come to a screeching hault. The symptoms from my CCM have not gone away & one of the main one is I’m can only read, write, or look at things up close for a couple minutes at a time. Which may make, being on this site, difficult. My mom passed away last year, so luckily my son & I moved in with my dad. But other than him, I don’t have much support. My friends, for the most part, have all fled! And most of the time, even with doctors, I feel like everyone makes it out like this isn’t a big deal. I’ve become a recluse & sometimes don’t leave my house for days at a time. Majority of things I used to do, I can’t do any longer.
First, welcome to a very diverse, dispersed family! I’m sorry to hear your CCM is giving you issues but I hope you’ll feel among friends here and we can offer support from around the world. Many people feel the same as you: that their old self has been replaced given some of the challenges we face with a symptomatic CCM or AVM.
Have a look round. Use the search icon (grey magnifying glass on the green banner) to find out about conversations that others are having / have had and join in as appropriate and we’ll all try to support!
Very best wishes,
Thank you for the kind words, Richard. I’m happy I found this group. Although, I have great difficulty reading & writing which is making things frustrating. Even still, it’s nice to know I’m not alone.
Hey Lauren, I also have lost some friends along the way but I’ve also found new ones. Life can be challenging hope you can find some positives through this.
Thanks! I appreciate that. It’s been a real struggle & I just feel completely lost & alone. Not knowing what’s next is hard as well. I’m trying to remain positive, but that’s the really challenging part. I truly just cannot believe this is happening. Like, all the plans I had for myself & my son are gone… done! And it’s risky for me to even fly!!! Overwhelmed doesn’t begin to describe my feelings.
Hi and welcome to our Group. Just knowing that you have an AVM is scary enough. In the beginning your friends talk to you like you’re 10-years old. Then they stop calling or coming by as often. That’s where we come in. We are hear to support and encourage you. We will share information we have picked up on our AVM journeys that we will gladly share with you. If you need to vent, we’ll listen to you. We will do whatever we can to help relieve your fear of what to expect. All of our stories are different, but the saving grace is “we get it”! We understand how you feel. We know the headaches. We know the memory loss. Most of all we know that we may never the same as we were the day before we were diagnosed. I was thrilled beyond belief when I found this web site. I connected with people who had been there and were still there. We will be here for you as well. Pray and be patient. God Bless you.
It is not easy when your “close” friends drift away because you cant do the same things you did before.
I have those moments when I think to myself "Iam alive but I dont feel like I am living"
It is hard not to compare your new life to the old life and reinventing yourself is easier said than done but keep fighting and take it step by step…you are not alone in this.
Thanks to everyone who has reached out (as I’m about to cry)! It is helpful talking to others who understand & “get it”. Just like everything in life, the most frustrating part is not knowing what next. Also having a 3 y/o autistic son whom I raise alone (now without a job) has been fun as well lol. At this point, he is literally the only thing that’s keeping me going. Because of the issues with my eyes, it makes nearly everything a challenge. So I end up sitting around the house, sometimes not leaving for days at a time!
Your blessed to have your son! Sometimes we have to keep pushing because other people depend on us. Try to take it one day at a time
I, too, understand completely on the realizing who one’s true friends are and who are just casual friends. When I was recovering from the AVM, before I really got my speech capabilities back full swing, I realized that most people were not listening to what I was saying. I could say “I’m fine” or “Yeah” and they wouldn’t press the matter, instead choosing to talk about their own lives. I was lucky, in that I did have friends who pushed for more. I hope that you can find a few close friends who push for more from you, too.
As for reading issues, I have that, too. This was particularly hard for me to struggle with reading because pre-AVM me was a fantastic reader. I have found a couple of tricks that seem to work with me to make it a little easier: read alone. When no one is around, I don’t feel like I am disappointing them or making them feel bad because I can’t read as fast. If you have the original kindle, it can read most books for the system. Apparently though, they took text to speech off for the kindle fire. Audio books are also a wonderful thing. In the first two or three years after my AVM, I mostly just listened to the text-to-speech software. It wasn’t the best, but it could read faster than me, so I got used to it. Then I found audible.com which has actual people reading stories. That has been how I have dealt with reading, for the most part. The important thing is not to judge yourself harshly if you can only read for a little bit. When I do read physical books, I can only read for about an hour before I get a headache. And that is ok. It’s just a new struggle.
Thanks Jessica! At this point, I’m not even trying to read books. More websites & such, doing research or looking for doctors and whatnot. And even being on this site for example. I presume it will get better with time. However, at the moment it is pretty unbearable. And the hardest part is that no one seems to want to help!
Hmmm … What kind of computer do you use? Macs will read most websites if you highlight the text you want read. There are some programs that might be available for othe computers, too.
I have an old laptop (not a mac) that’s very slow. Right now just using my phone
The “new” life changes u. I find myself in the same situation. The people I was around don’t understand what I’m going through and since I’m no longer doing what they do, its separating me from them. What I can tell u is keep on moving forward. Life will get better. It just takes time to learn how to deal with the new life u have. God has a purpose and one day u will figure it out. God has not told me yet but one day He will and I will be ready.
God is good all the time!