I have been here for a few months now and always have read posts about people being terrified obviously before surgery and many many other emotions. It's a complex situation to be in and for most of us it's been a huge huge surprise and shock.
Everyone is encouraging and supportive and I believed and got through this (sort of) as best I could.
The surgery is now over. Three weeks ago today I was in the ICU waking up from surgery.
Anyone having had the surgery knows how that goes and how it feels to go home and get to really try to rest. I was also scared to go home though in case something happened.
Now I've been home sixteen days and I guess some of the things are getting better. The lack of energy and pain is better. Somedays I barely have any then the next day I can't get out of bed. My husband is helping me get through this and is taking care of everything. I feel guilty he has to do all of this but I'd do the same for him so that gives me solace.
For the past few days I have been soooooo angry. I knew I'd be tired and that's ok I guess. Nothing to do but rest in that case. I did a few chores today and felt good about that anyway. I even made a salad to go with the pasta Al made.
The bad part is my eyesight still. I keep complaining about it but it's really taken me for a loop. The pain is almost gone. It's not opening anymore that after the surgery. Part of it is still swelling. It's gotten to where I can see pretty clearly out of my good eye for awhile until it gets tired. But, now I've got bad double vision so I have to use only one eye again so I can walk around and see TV. Making a salad was fun if you can imagine two of them and hoping you cut the right one. I did. It's very awkward. I find myself crying alot because I never realized, and why would I, how difficult of a disability this is. I'm embarrassed to go out because I look so awful. The shaved head, the eye shut and swollen, the walker and still bumping into things or losing my balance. If I could see I don't even think I'd be having a hard recovery. I otherwise feel strong.
Sorry for the negative thinking. I wasn't sure if I should put this here because I don't want to scare anyone. I guess I can't always be positive though so I'm sorry if this is offensive to anyone.
Jeanine, we can’t be positive 100% of the time but to make the effort so we don’t get depressed is worth it’s wait in gold! I’m sorry you are still having problems with your eyesight. Have you spoken to your doctor? What do they say?
After my rupture and eventual release back home, I bumped into everything. I still can’t cook unless supervised. I had to wait for my brain to heal a few months before I could get my eyes checked. I’ve lost a bit of peripheral vision more on the right then left. I keep my partner on my right side and a half step in front of me or so. I will even hang on to friends arms when we’re out and about. Which was awkward at first. It makes me feel safer and I’m not bumping into people I don’t know. I’m even learning to use a hammer differently because the whack on my finger hurt like the dickens:). Worse part was, I thought it was another finger!
As for your hair - girl it’s winter - wear funny hats! If you smile, everyone else will too and it just makes one feel better. Get and give lots of hugs.
I am sorry to here that you are having a tough time, but it will get better. We can't be positive all the time and sometimes we just need to let our emotions out. After my surgery for a ruptured aneurysm, I had double vision for about a month. An eye patch helped with the double vision issue and it eventually resolved itself. I was also mortified that they shaved my head! I was 16 and very self conscious about how I looked and they didn't even shave my entire head. Try to find something that you enjoy that will not be stressful or exhausting if you can-- listen to music, meditate, take deep breaths, steep tea, call a friend, pet an animal--whatever you think could help. Wishing you well as you recover from your surgery!
Hi Janine, We are here to support and listen to try to help each other. We all have shared our problems, good or bad. Please do not think or feel that you are alone. All of us have our share of " pity parties". You are just a short time out from surgery. Your brain and body has bee invaded with the aneurysm and surgery and needs time to heal. Listen to your body and get the rest that it needs to heal.
I will send healing prayers your way. It is fantastic that your husband is there to help you! Have faith and God will help you to get through this.
Hi Jeanine, Look upon this whole saga as a journey, it started when you were diagnosed, did you worry? Yes! Did it help? No!
The next step was a decision, you made the hard decision to have treatment, another step in the journey and that was a hard decision, did you worry? yes! did it help no! Now you are on the final stage of your journey, where you are in recovery mode!
Are you still worrying? Yes! I suggest that it is time to stop worrying and smell the roses, it will only get better from here in, so be happy and thank all those that are supporting you (husband and family)and you will get better and stronger every day.
Treat every day as a new life, seek the simple things in life and recovery will be quick, there may be the occasional hick up, but life is full of them anyway!
Every day that you look yourself in the mirror, commit to the mantra, today I am good, tomorrow I will be better, more than good and I will be stronger!!!
Try to smile every day and make people wonder what you are up to.
Best wishes and keep us all posted on your progress, we are all here for you and supporting you.
Hi Again Janine, A point that I meant to make in my last post to you was as follows.
By virtue that you were able to make your post shows that you are well on the way to recovery, Yes! it may not be as quick as you want, but what it does show is that you have all your faculties about you, but are simply somewhat frustrated, as in your opinion the recovery is not as quick as you want.
My advice is to forget the pace of progress, what is more important is that you are lucid and alert, don't push it, set yourself little challenges for each day and achieve them, that is real progress.
Before you know it you will be back to the old Janine, perhaps better and certainly a lot wiser.
Jeannine, no need to apologize for anything - and you aren't being offensive. We all have bad days at the beginning, some more than others, and you are definitely having yours. If you can't rave at other survivors, who can you rave to?
I was extremely fatigued and when I would feel better one day and do something, I would pay for it the next 3 days in bed. That, unfortunately, is sometimes how our recovery goes. Fortunately, my annie was not close to my eyes, so those were not affected for me.
You do sound a lot better than you did a week ago, but I know it's difficult, especially with your eyesight. Try to take it day by day and rave anytime you want. You will be amazed at how much better you will be 3/6 months from now.
I feel like I don't have the right to feel bad. Having a rupture is far worse than unruptured like mine. I'm sorry you still have vision difficulties. Will it improve with time or stay that way? It's amazing how you and we all here seem to adjust and make new ways to do things.
I know what you mean about not being able to be positive all the time. I seemed to be ok dealing just with being in recovery. Maybe I got a little better so I was noticing my limitations more. Depression is a concern for me. I'm bipolar and have that SAD so it's always been a challenge. So far I don't have that cloud over my head. Maybe that part is sleeping, even though it's physiological not psycological. It's a good thing anyway.
Last Friday I was having more pain and worse vision and my dr. said to go to my local dr. who saw me and prescribed different eye drops and wanted me to come back Monday for a recheck and maybe a referral to an opthamologist. By Monday they said since I'm post-op I should go to the ER instead. I've been there twice since home so I didn't want to go again and waited. It got better then double and blurry again...blah blah blah. I'm scared obviously. Today again was painful but as the day went on it got better again. Still some double but a little better. Right now it feels pretty good so I hope that stays.
When did you have your rupture?
Jeannine
Moltroub said:
Jeanine, we can't be positive 100% of the time but to make the effort so we don't get depressed is worth it's wait in gold! I'm sorry you are still having problems with your eyesight. Have you spoken to your doctor? What do they say?
After my rupture and eventual release back home, I bumped into everything. I still can't cook unless supervised. I had to wait for my brain to heal a few months before I could get my eyes checked. I've lost a bit of peripheral vision more on the right then left. I keep my partner on my right side and a half step in front of me or so. I will even hang on to friends arms when we're out and about. Which was awkward at first. It makes me feel safer and I'm not bumping into people I don't know. I'm even learning to use a hammer differently because the whack on my finger hurt like the dickens:). Worse part was, I thought it was another finger!
As for your hair - girl it's winter - wear funny hats! If you smile, everyone else will too and it just makes one feel better. Get and give lots of hugs.
Thanks. When I hear that someone has survived a rupture I usually feel like I've told others that I have no right to complain. How much more difficult must that be??? I can't believe you were sixteen??? How does that happen anyway??? If you don't mind my asking, how old are you now? You have amazing positive understanding words. You must have been terrified and so young for such a huge life changing event.
I wear an eye patch sometimes too. It stops the double vision and also it helps rest the eye that's covered. It's hard putting glasses over the eye patch though. I can't wear my contacts yet. Plus covering the good eye makes me more blind. Anyway, like you said it'll probably resolve itself. I'm hoping and will see in time right?
Thanks,
Jeannine
Irene Tran said:
Hi Jeannie,
I am sorry to here that you are having a tough time, but it will get better. We can't be positive all the time and sometimes we just need to let our emotions out. After my surgery for a ruptured aneurysm, I had double vision for about a month. An eye patch helped with the double vision issue and it eventually resolved itself. I was also mortified that they shaved my head! I was 16 and very self conscious about how I looked and they didn't even shave my entire head. Try to find something that you enjoy that will not be stressful or exhausting if you can-- listen to music, meditate, take deep breaths, steep tea, call a friend, pet an animal--whatever you think could help. Wishing you well as you recover from your surgery!
I know it should be ok to vent, it's just that I don't think I've seen posts about people struggling since I've been on anyway. I'm doing much better right now, at 2 am. The past 2 days though were still really difficult. It's like every once in a while it hits me how much I've been through and still have to go through. I keep reminding myself how awful the unknown was and how everyone said how much relief I would feel after the surgery. I did but not alot. Too busy being in a daze and just getting through the pain and afraid to go home in case something happened. Then, again too busy recovering and only once in a while do I feel relief and thankful that I survived. The first days after getting home, I was in the hospital 6 days, all I could think of was how I was going to make sure I did more with my life when I get better then that turned to anger and impatience. I think emotions are just going to be all over the place and I have to accept that.
Thanks for reminding me that my body's been through so much and for your prayers. Words and thoughts help so much.
Jeannine
Marjorie B Filipiak said:
Hi Janine, We are here to support and listen to try to help each other. We all have shared our problems, good or bad. Please do not think or feel that you are alone. All of us have our share of " pity parties". You are just a short time out from surgery. Your brain and body has bee invaded with the aneurysm and surgery and needs time to heal. Listen to your body and get the rest that it needs to heal.
I will send healing prayers your way. It is fantastic that your husband is there to help you! Have faith and God will help you to get through this.
I love how you say about the stages and how did I worry, yes, did it help, no. And now, is worrying helping? No. I actually am ok sometimes,then sad, frustrated, impatient with myself, angry and only once in a while grateful and positive. I'm working on changing that. I'm thinking reality more than my day to day stuff is sinking in. The enormity of what's happened, what still will happen, and I have no control over it needs working on too.
As far as looking in the mirror it's only in the last few days that I'm beginning to accept the new "look." The eye half shut, the dents in my head, the hair sprouting out, and I really hate wearing glasses, I have coke bottle ones because of being legally blind in the one not affected, is a lot to swallow. I'm not having a pity party just processing everything.
Thank God this site is hear. It's the only place where people understand and have similar experiences. I can't imagine getting through this without this help and support.
Thanks for yours,
Jeannine
MartinC said:
Hi Jeanine, Look upon this whole saga as a journey, it started when you were diagnosed, did you worry? Yes! Did it help? No!
The next step was a decision, you made the hard decision to have treatment, another step in the journey and that was a hard decision, did you worry? yes! did it help no! Now you are on the final stage of your journey, where you are in recovery mode!
Are you still worrying? Yes! I suggest that it is time to stop worrying and smell the roses, it will only get better from here in, so be happy and thank all those that are supporting you (husband and family)and you will get better and stronger every day.
Treat every day as a new life, seek the simple things in life and recovery will be quick, there may be the occasional hick up, but life is full of them anyway!
Every day that you look yourself in the mirror, commit to the mantra, today I am good, tomorrow I will be better, more than good and I will be stronger!!!
Try to smile every day and make people wonder what you are up to.
Best wishes and keep us all posted on your progress, we are all here for you and supporting you.
Thanks for your support. And yes, I agree where else could I express my feelings and be completely understood? You mention having bad days in the beginning. When did yours start getting better?
I know what you mean about doing something one day then paying for it for the next few days. It's so tempting to try to be "normal" for a bit if I'm feeling better. Al will usually remind me I'm doing too much and I try to listen.
Today, I know I did too much so I'm preparing to be fatigued and feel like I've been hit by a truck. When will I learn huh?
Here's to at least not missing too much football this weekend.
Take care,
Jeannine
Sherri Long said:
Jeannine, no need to apologize for anything - and you aren't being offensive. We all have bad days at the beginning, some more than others, and you are definitely having yours. If you can't rave at other survivors, who can you rave to?
I was extremely fatigued and when I would feel better one day and do something, I would pay for it the next 3 days in bed. That, unfortunately, is sometimes how our recovery goes. Fortunately, my annie was not close to my eyes, so those were not affected for me.
You do sound a lot better than you did a week ago, but I know it's difficult, especially with your eyesight. Try to take it day by day and rave anytime you want. You will be amazed at how much better you will be 3/6 months from now.
Although your aneurysm didn't rupture, it is still affecting you, and you have the right to feel whatever it is you feel. Having insight into what you are going through is both a curse and a blessing. Because you are aware of so much, it makes it harder, but being aware of your challenges also can help you get better. While I was in rehab, I met a friend who had an AVM rupture. She had complications and had it worse then me. I also felt at times like I shouldn't be complaining! I was super young when I had my rupture. It was over 8 years ago and I am 24 years old now. No one knows what happened or why...it just did. I really believe that everything happens for a reason, even if we don't know what that reason is. I actually don't remember being terrified at what I was going through, though I was sometimes (or very often!) frustrated! It certainly was a huge life changing event for sure! But I really think people have an amazing ability to cope with incredible life events. I recently learned the term "post-traumatic growth"- positive change experienced as a result of the struggle with a major life crisis or a traumatic event. Despite everything, a lot of good has come out of this for me (it took me a while to see it!).
I wore contacts since I was 12 years old, and I wasn't able to wear my contacts either. I also found it hard to wear an eye patch over glasses. I had to pretty much choose between being able to see with glasses, but having double vision, or wearing an eye patch and not have double vision, but not being able to see much other than what was right in front of me....life was pretty blurry! I haven't tried this, but maybe having gauze over your eye held by medical tape can help so you can wear your glasses? I hope this resolves soon!
Take good care! Irene
J Knights said:
Hi Irene,
Thanks. When I hear that someone has survived a rupture I usually feel like I've told others that I have no right to complain. How much more difficult must that be??? I can't believe you were sixteen??? How does that happen anyway??? If you don't mind my asking, how old are you now? You have amazing positive understanding words. You must have been terrified and so young for such a huge life changing event.
I wear an eye patch sometimes too. It stops the double vision and also it helps rest the eye that's covered. It's hard putting glasses over the eye patch though. I can't wear my contacts yet. Plus covering the good eye makes me more blind. Anyway, like you said it'll probably resolve itself. I'm hoping and will see in time right?
Thanks,
Jeannine
Irene Tran said:
Hi Jeannie,
I am sorry to here that you are having a tough time, but it will get better. We can't be positive all the time and sometimes we just need to let our emotions out. After my surgery for a ruptured aneurysm, I had double vision for about a month. An eye patch helped with the double vision issue and it eventually resolved itself. I was also mortified that they shaved my head! I was 16 and very self conscious about how I looked and they didn't even shave my entire head. Try to find something that you enjoy that will not be stressful or exhausting if you can-- listen to music, meditate, take deep breaths, steep tea, call a friend, pet an animal--whatever you think could help. Wishing you well as you recover from your surgery!
hi! no its not negative- its honesty, its reality, i'm glad you posted this, it helps us to not feel alone- we are all in this same boat together. I am glad you were able to make a salad, it sure helps the soul, I make quick meals with short cuts like stir fry with frozen Asian veggies and frozen grilled chicken strips also fried rice with leftover rice, also chilis pretty quick then simmer and I rest, take care and hang in there- first 2 years I cooked ziltch!! things usually improve but at a snails pace!~~ keep writing and venting it helps us too!~~
I had a rupture in June. I have awful double vision and dizziness. I believe the dizziness is worse than the eye sight! My boyfriend has been unfaithful to me, so that’s over. I have cried every day for 3 months. I have lived all that time alone! I’m very impatient and my recovery is much to slow. I can already see how the changes that this has caused will be for the good. I’m just ready to be better so I can implement the changes.
Anyone else have the dizzy issues. I certainly hope they will resolve!