Hello everyone!
My name is Daniel and im from Syd, Australia. Last Feb i had a SAH one evening after probably 2 drinks. After being taken to hospital they fixated on the fact id "been drinking" and wrote off my behavior as being completely intoxicated, i didnt even see a doctor and was asked to leave at 6am (i have no memory of any of this). After spending what i can say was 2 days in hell vomiting and with the worst headache ive ever experienced my neck started to lock up, i was taken to my GP who actually had her head screwed on and long story short, a couple embarrassed nurses and an ambulance ride i had an angiogram where they found 2 Aneurysms that needed clipping, 1 ruptured during surgery and then a month in intensive care and 10 kgs lighter i left the hospital.
Now there are a few things ive noticed that suck now.
1. My sleep has been terrible, ive always been a night owl but i would spend hours staring at the ceiling unable to sleep, after a couple months getting to sleep became easier but staying asleep was next to impossible waking up every 40 mins or so
2. My memory is completely trashed, i need to write everything down and plan everything. I forget what im talking about mid-sentence. Ive always played music and it seems i cant retain any music i read now.
3. Often my speech is fine, but if im tired or especially if i get anxious i start to stutter and fall over my words/forget them, its like i can see in my head what im trying to get across but it just doesnt come out of my mouth and this is obviously very enraging because for about 75% of the time im ok and people are just assuming that everythings perfect with me.
4. i have a feeling of disconnection. Ive always suffered from depression and anxiety but now, sometimes it feels like im standing behind a glass sliding door looking at the people talking to me and i have no idea whats going on and i can hear myself talking but theres just an attachment missing.. and i dont care. Its really awful when i look at loved ones and its like ive never met them and they're complete strangers to me, its hard with the girlfriend of 4 years cos when i get in these moments its like all the feelings i have for anyone switch off completely, its a very lonely feeling.
5. Im incredibly obsessive compulsive now. I was always a tidy person but now its just insane, everything has to have its place, be vacuumed, be filed perfectly, (if you saw my ipod you have never seen a cleaner music collection i promise you lol), i cannot deal with clutter.
6. I thought that id try and get back into something that resembled a healthy state and tried some weights and exercise etc, the pressure i generated straining etc seems to have messed with the muscle they cut through and its unpinned or done something odd cos its collapsed and i have a massive dent in the side of my head now running along the scar
I dont know what im hoping to get out of this (if anything) but does anyone else seem to get any of this? esp the #4 point. I no longer smoke since it happened, and btw im only 23, 22 when it happened, and now no one will hire me for fear that im "impaired" or a "liability" so yeah, any support to tell me im not insane would be greatly appreciated.
Thankyou for putting up with my whinge, i hope to get to know some of you better.
Kind regards,
Dan.
(Im sure ive forgotten points in here somewhere so i may add to this lol unless the response is awful)
Hi Dan - No awful response from me - just understanding. I have 1,2,3,4 and 5 on your nicely numbered list so I do understand. I am approaching my 1 year mark (March 23) and while I am so far ahead of where I expected to be I am no where near where I want to be. I just want "me" back but have accepted that may not happen. I'm still here with my family and while everyday is still a challenge, I find new and inventive ways to deal. Being on here is a blessing because people get what we are going through. Join us on chat sometime - lots of other Aussies on there at strange times :) You take care and vent anytime.
Mary
You are not insane. What you went through was very difficult and could have taken your life, but it did not! You are on the road to recovery and survival. The people on this site are the lucky ones, and you are now one of us. Welcome. I can relate to all 6 of your points, and am sure that many others will feel a strong connection to what you have posted.
Thank you, and know that you are not alone!
Peace,
Mark
Hi, Dan. I can relate to #s 2, 3 and 4. I experienced a ruptured aneurysm with subarachnoid hemorrhage less than a year ago. I am very blessed to be a survivor. I know am very fortunate to have no visible physical deficits, but I have not returned to “normal.” To everyone on the outside world, I appear fine but, I am not! In social situations, I smile and project my old confidence and knowledge level, but again…I ain’t all there! Especially when there are a lot of distractions: noise, lights, activity. So frustrating. Post-it notes are my new best friends since I have to write everything down. I am still having headaches, EVERYDAY. I am still on a lot of medications. I am hopeful, as time passes and
continue to heal; the fatigue and mental fog will dissipate and life before aneurysm as I knew it will return. =)
Teresa
welcome Dan wow uve just put into words exactly how i feel and cant seem to tell anyone for same reasons......you will find alot of support on here. Warm welcome from Scotland :)
Hi Dan and Welcome to BAF...I think many of us have experienced and continue experience some if not all of the points above...I truly think it takes time to find your "new normal"...and strive towards "acceptance"...
You have been through a tough time Physically and Mentally and it takes along time for the brain to heal...perhaps seeing others who experience the same things will help...Number 5 is me to a "T"...always an organized and clean fanatic, but worse since my annie...
You are not alone...and have come to a good place ~ Colleen
hi there Dan! yes absolutely all points.Things will improve I'm sure,hang in there this is a marathon recovery. We'll keep you & yours in our thoughts and prayers just in case!
Hi Dan,
Nice to meet you and yes I feel for you as I have many things in common with you. 1,2,3, and at times some of 4. I was not a night owl as I have young children but now I find myself up till 3 am often. I have only been recovering for almost 4 months so I am hoping it gets better. As I have heard it does get better so I am keeping my fingers crossed and hoping for the best. I constantly think and tell my husband I just don’t feel like me and I want me back but he tells me I might have to live with the new me. I still haven’t excepted that but I know I will have to at some point. I am just not ready. Anyway just think it could be worse. You could be in a comma you could be a vegetable from sever brain damage but YOUR NOT :)
Vicki
Thankyou everyone for the response! Its comforting to know that there are people who understand.
Yes i suppose it is about adapting to this "new me" but i just hate that now i have more to prove to people, esp in regards to employment that im not completely damaged goods, but as Vicki said im alive when i should probably be food for worms so i can only go upwards. The idea of the brain healing is just such a void and uncertain thing, its not like a bone mending, and what drives me insane is people dumbing down what you mention like "oh yeah my memory is bad too, dont worry" or "yeah i have the same thing, its nothing big" " F%*#! i knew before and know now, its NOT the goddamn same...
Welcome to the group Magpie. I am also from Sydney.
You are not alone in your feelings and also the way people we know say they understand, they are trying to be helpful but they do not know what it is like to have had someone in your brain. I am almost 12 months since being diagnosed & I had 2 PED's inserted in May 2012, my operation was no where as bad as being clipped as mine was done via an angiogram, but it was still brain surgery and still has left behind scars. It take a long time to recover so give yourself time try to be patient with others especially loved ones, maybe get them to join the BAF and read a few of the blogs or speak to other relatives, it may give them a better understanding of what you are feeling.
Because we look fine on the outside our loved ones think we have healed but we are slower to heal on the inside, be patient and chat or blog whenever you need, there is almost always someone on here.
Number 4 is the point that concerns me the most, and i feel like that's getting worse, its a very dead feeling :(
Dan you are still early in your recovery, I am almost a year an I still hav very black days, or other days can be very emotional. Can you talk to a physiologist as a lot o what we go through is post op stress disorder. Get you GP to refer you there s nothing wrong with talking your feelings through with someone. I hope you are ok and looking forward to your golf day.
Please go for Help Dan...to your Doctor and/or call crisis intervention...seems like you are reaching out for help...~ Gotcha in my Prayers ~ Colleen
hi Dan! yes its like the opposite of socializing-this void-hopefully it will improve with time and prayers