I want to say in general I have wonderful people supporting me and helping me out. I am a little over a month out of surgery, one leaky aneurysm and one that ruptured thankfully while I was in the hospital. I am starting to run into just a few people that seem to be expecting me to closer to normal, whatever that is, and get back to normal routine. I’m trying to be polite in explaining it isn’t that simple. I still suffer from fatigue and daily headaches some of which ate terrible. I was wondering if anyone had any advice on how to help explain that it’s not that simple for us.
It's been 11 years and even now I still get told the same thing. I have a letter I would like to share that's had helped me through the years
Here’s the link. Happy reading everyone. It makes me reflect laugh cry. Really touches home
http://waiting.com/letter.html
Oh Michelle, I feel your pain.
After declining all sorts of social invitations, finally, I had a friend imply that I was being selfish by not going out anymore or not being social "This aneurysm isn't just happening to you, it happened to all of us who watched you and stayed with you in the hospital." Nice guilt trip, right? Well, I waited a LONG time before responding, because I don't want to be mean and nasty. NO ONE will ever understand what we deal with, unless they've done it themselves. I have come to peace with that.
I composed an email and gave them this link:
I also told them that my favorite place is HOME now, so if they want to see me, just check in to make sure I'm not having a headache day, and I'd love to see them too. My social life is much smaller now, but I'm OK with that.
Good luck to you hon, and good luck making peace with all of these changes.
@Mika that is a great letter too! Thanks! I need to read that every day, I try my best to ignore what my brain is saying, sometimes I need a reminder.
Michelle,
Those that expect more normalcy really do not comprehend what happens to the brain when someone suffers from an aSAH. While new treatments have improved not only our chances of survival, they have also improved the possibility of meaningful recovery. Compared to other diseases and illnesses, those of us who had an annie rupture are a minority so often there is a lack of understanding. It sounds like you are doing well! You may not ever be 100% back to the way you were before your rupture. While I made a very rapid recovery, surprising my doctor and therapist, I know there are still some minor issues... my new "normal" that others may not see or be aware of. I went back to work as an RN just 9 weeks after a grade 4 SAH (5 is the worst for those that don't know the grading of an ruptured annie) and returned to college 8 months post rupture (and am maintaining a 4.0 avg at age 50!) however I still have some issues with memory- I may tell someone something more than once because I forgot I had already told them and while I am able to read and comprehend, I no longer can read for extended periods of time as I did before the SAH. I have to break it up into smaller segments. Thankfully, once I made it home, I have not suffered from any headaches other than my normal monthly migraines. I credit a couple of this for my rapid recovery, besides the skill of my wonderful neurosurgeon. I attended an outpatient neuro-specific rehab for 6 weeks once I was released from inpatient rehab and they were absolutely awesome! Thanks to my primary therapist, who had me playing games on lumosity.com, I joined after I finished rehab to continue to try to improve my cognitive skills. While it isn't cheap, I definitely think it was worth the money I spent.
If you feel that these people are important enough in your life to warrant an explanation, I would print off materials available from the internet about SAH. I did a ton of research after my brain was cooperating again and just the statistics should tell them that this is not minor illness. 15% of those who suffer from aSAH die before ever reaching medical assistance, of the remaining 85%, 50% of those who do get to the hospital still die! Only about 15%-and those are usually people who's SAH is classified as a grade I, II, or III actually totally recover (and totally recover isn't really defined). Those are pretty shocking statistics and knowing those made me realize just how much I appreciated being alive, much less the degree of recovery I have had! At 1 month, I was better, but definitely not "normal" and had a long way to go. Keeping you in my prayers.
Mary
Michelle, we all feel your angst. Send them to the BAFWebsite which has some wonderful information for family and friends. Also check out YouTube. UCLA has some very good videos.
I did go out with my friends about one month after I got home, or maybe it was two. We go to breakfast on Saturday morning as usual. I don’t drive that far, so my partner does the driving or one of our friends picks me up. We’re there when the place opens and I leave when it gets loud for me. So maybe an hour, sometimes two hours. It was important for all of us to have something familiar and it helped with my healing process. I get a nap when we get home. We have also started playing cards a couple times a month at one of our friends homes. We leave when I have had enough.
My friends were scared they had lost me. They know I won’t be the exact same but they know I am still me. They had it hard as well. But, I haven’t really changed much, slower, but with the same quirks, except I talk more now, have an accent that’s not from around here, and a tremor. My friends can tell me to give them a chance and would when I first got out of hospital. I’m learning to be quiet again. They praise me when I find a great word to use in conversation and give me time to find the word when I need it. Sometimes we play guess the word game. They have also learned to tell when I’ve reached my limit and won’t push me past that. I hope you have as good of friends as I, they are worth their weight in gold.
There were some people who feigned concern and compassion that I worked with. I didn’t let them come to ICU, nor did my partner. I’ve learned it’s better to have a few friends that can count on each other then a lot of associates that just like the drama moment.
Moltroub said:
Michelle, we all feel your angst. Send them to the BAFWebsite which has some wonderful information for family and friends. Also check out YouTube. UCLA has some very good videos.
I did go out with my friends about one month after I got home, or maybe it was two. We go to breakfast on Saturday morning as usual. I don't drive that far, so my partner does the driving or one of our friends picks me up. We're there when the place opens and I leave when it gets loud for me. So maybe an hour, sometimes two hours. It was important for all of us to have something familiar and it helped with my healing process. I get a nap when we get home. We have also started playing cards a couple times a month at one of our friends homes. We leave when I have had enough.
My friends were scared they had lost me. They know I won't be the exact same but they know I am still me. They had it hard as well. But, I haven't really changed much, slower, but with the same quirks, except I talk more now, have an accent that's not from around here, and a tremor. My friends can tell me to give them a chance and would when I first got out of hospital. I'm learning to be quiet again. They praise me when I find a great word to use in conversation and give me time to find the word when I need it. Sometimes we play guess the word game. They have also learned to tell when I've reached my limit and won't push me past that. I hope you have as good of friends as I, they are worth their weight in gold.
There were some people who feigned concern and compassion that I worked with. I didn't let them come to ICU, nor did my partner. I've learned it's better to have a few friends that can count on each other then a lot of associates that just like the drama moment.
Sarge, you couldn't have summed it up better. I was quite the social butterfly but now I enjoy peace and quiet. I'm a different person now and I've accepted it. Thanks for sharing the link
Sarge said:
Oh Michelle, I feel your pain.
After declining all sorts of social invitations, finally, I had a friend imply that I was being selfish by not going out anymore or not being social "This aneurysm isn't just happening to you, it happened to all of us who watched you and stayed with you in the hospital." Nice guilt trip, right? Well, I waited a LONG time before responding, because I don't want to be mean and nasty. NO ONE will ever understand what we deal with, unless they've done it themselves. I have come to peace with that.
I composed an email and gave them this link:I also told them that my favorite place is HOME now, so if they want to see me, just check in to make sure I'm not having a headache day, and I'd love to see them too. My social life is much smaller now, but I'm OK with that.
Good luck to you hon, and good luck making peace with all of these changes.
@Mika that is a great letter too! Thanks! I need to read that every day, I try my best to ignore what my brain is saying, sometimes I need a reminder.