I am so happy to be part of the family. I have been reading some of the articles and comments and it is helping me to deal with the “new me.” I know I can not go back to my job because I am sensitive to noise and to light. I also have problems with recall when I am feeling excited or stressed. I often feel like my brain is blank or feels like a dark void but peaceful oddly enough. Get extremely fatigued when trying to focus on anything for too long. I am my own time table and just trying to relax but it is hard when you are not sure what may come.
I certainly relate to a brain being black, it’s what I kept telling my Neurosurgeon for about three years after I ruptured. It wasn’t until I met Madere, who used to be part of the wonderful people of ModSupport, and her husband down in Atlanta that someone finally understood what I was trying to say. Her husband figured it out in a New York Minute which I suppose is faster than any other minute lol. He said, “Oh, you have no awareness of thought processing”. I think I may have jumped up and hugged him right then and there! Because he gave me the words, I could pass them to my Neurosurgeon who finally understood me saying “brain black” and tapping my thick skull. My words were really lost back then. I believe his understanding helped my recovery tenfold. It still amazes me that a person I never met knew exactly what I was trying to say, God love him.
@ronk also helped me as did numerous others here. Ron understood immediately when I couldn’t visualize things or people in my brain, I had to have pictures to see. He and others provided work arounds that I practice to this day. I chatted with him and a couple of others about the first image that popped in my brain - the foreleg of a horse from the knee down! It took me about five years I guess to even start regaining that ability though it’s shaky at best now. Lack of visualization makes it really difficult for me to remember how to do things here as a Mod. Fortunately, I have Merl, Ms Sharon and Mr, Richard from @ModSupport helping me. I’d be lost without them I do believe, Their compassion and understanding is awesome.
I can’t recall anyone ever saying the same about their brain being like a dark void. It is peaceful in its own way and a wonderful way to see it.
I hope your experience here as a member provides as much for you as it has for me.
Suzanne! We ARE a family! I’m exactly like you and I am 8 years past my rupture. I cannot tolerate noise, sensitive to bright lights, fatigue is still with me but luckily I am able to nap almost every day, i cannot deviate from what I plan to do in a day. If friends want me to do something with them I need to know ahead of time. If there is a lot of chatter in a room, I can’t cope and excuse myself to a quieter place. My short term memory is awful but I don’t have any problem remembering old things. Grocery shopping - even with a list - takes me twice as long as it used to because of the incessant music they play in every store I go to. People who have never been through what we’ve experienced don’t even “hear” the music. We used to live in that world. Now we have a “new” world.
Grateful🙏🏽Morning!
Your post has just described my life exactly! Thank You for sharing. It’s been 21 yrs for me, and I still experience everything you shared. I get overwhelmed by any deviation from whatever it is I’ve planned to do, or trying to do. I still get lost in familiar places, have headaches and trouble with bright lights, to many people, and more than 1 person speaking. All in all, I’ve managed to take care of myself and prior to my mothers transition, I cared for her. We all are in this together, and I’m so appreciative of everyone here, and grateful for all the shares that help me feel I’m part of a family who understands❤️
Blessings for you and Continued Health!
As I read these posts, I am struck with a grateful feeling. A feeling of normalcy. I am sorry that you all have this aftermath, but I am pleased as well because it confirms that I am not alone. I don’t wish for anyone to go through what I have gone through, but I am glad that I found a community where people understand me and I understand them.
To those who have posted here or elsewhere on this site, thank you for your candid response and thoughts. To those reading here and looking for help, advice or understanding and support. Look no further - your here!
Hi Suzanne… I am 10 years past my rupture. The doctors said i had comthrough perfectly, but i was feeling less than what they said i was feeling. I was feeling exactly the way you were, blank brain. I had no sense of time, and because my doctors said i was fine, i had to return to work. I was constantly late, couldn’t remember to do things, and most of the time i didnt have the energy to do my work. It was a disaster.
About 2 years ago, i suddenly felt as if i was coming out of a comma. My memory and energy were coming back, and work got so much easier. I still suffer set backs, were i just feel so heavy i cant function. I get aura migraines with squiggly lines and rainbow colors in my vision. Those scare me, because i never know how long they will last or how much pain i will suffer. And i can suffer realy bad headaches when the weather changes. Living in New Hampshire is rough because the weather changes all the time! Lol!
On the bright side, i still work full time. I ride my horse, play with my dogs, and go kayaking. I stay on the move as much as possible. I am very blessed to be here, and so grateful that everyone on this site is here as well. This is the first time i have been on here in a while. So sorry everyone has suffered, but happy everyone is here to share!
I understand the beautiful days of your Summer has closed until next year but I imagine you might squeeze in a bit more kayaking around riding your horse. It’s good to see you posting!
Hi Cathy I am 8 years past my rupture. I experience absolutely everything you just said. I was also getting “spike” headaches…its like an ice pick is jabbed through my skull. It can last seconds to minutes of intense pain and then dissapates or turns into just a headache. It used to happen 5 to 10 time an hour. My doctor put on me an anti-inflammatory and now only happens 2 to 5 times a day. So now I can deal with that.
My advice then, is keep trying and testing new treatments. You never know.
Hi Kparry
I was reading something recently about how coping with major changes in your life changes who you used to be. That is so true of what I feel like. I look like I used to, I wear the clothes I used to wear but I am not the “old” me anymore. I’m a new version of myself. I never look back and wish that this had never happened to me. It happened and I accept that. None of us can change the past. We can, hopefully, change our future by learning new things and helping, in some small way, those who are in need.
I really enjoy these “blogs”. No one bullies us here. No one rolls their eyes at us. We are free to write whatever we are feeling and no one judges us. Blessings! Cathy
Cathy, just to add on to your post. I actually had a conversation a while back with another survivor and we both agreed that in a way, we are thankful. Something like this forces you to evaluate your life and your priorities. In his case, his marriage improved because he recognized how he wasn’t giving it 100%. I think in my case, I tried to not sweat the small stuff. However, if I am honest, I have not mastered this change. I want that to be how I behave, but I am sometimes still bothered by things people do or say. I actually think that I accomplished this objective with strangers, the public at large, but I have a problem with members of my family. I hold them to a higher standard. I truly wish that I could fix this deficiency, but I can’t get my behavior to be consistent. I’ll take any recommendations people have.
Hi Brian
I, too, hold my family members to a higher standard. I am cautioned by my sister that I need to stay calm as I do get frustrated when I see that things are not going the way I think they should. I’m still having problems holding my tongue! I welcome any “coping skills”.
I am more successful in not sweating the small stuff. The other day, for instance, my hubby telephoned from our cabin up north to say that the newly shingled roof leaked somehow and ruined our mattress. He started his conversation by saying he had some bad news. I thought he was having pains in his chest because he is a heart attack survivor. When I heard the roof had a leak, I didn’t care actually. I only thought of what the people in the Maritime provinces (Canada) and the people in Florida have had to cope with. There is always something bigger than what we go through and I put it all in perspective. Now if he had said he had pain or hurt himself I would have been a puddle of mush trying to figure out how to help him as he was 3 hours north!
I’d give you more examples but I have limited short term memories! Just one of my invisible disabilities that I can add to my “list”.
Brian, I find for me my deficiencies rear their angry voice when I’m exhausted or stressed, or something comes up that wasn’t planned in advance. I’ve been under all of these a lot lately. I know things will eventually settle down. Doesn’t help my mouth when I say things I shouldn’t. When I can reduce two of the three I’m okay. I can generally do my breathing and count to ten or walk away. My family understands my need to walk away and though they might not like it, they do understand. Fortunately, we don’t live close to biological family.. The stress and the overwhelming issues had me tell my neurologist and he put me on a medication that I don’t need to take everyday as it’s highly addictive. He knows me well enough not to tell me to be calm as it has those words have the opposite effect on me. He did suggest that if I would rest, hydrate and eat protein I might find some relief. If I can’t get to a medium of control, he wants to do another MRI/A as I’m not scheduled for one with the Neurosurgeon until 2023. For me, it’s tradespeople I’m losing my temper with most of all. I really want them to do their job right the first time, clean up after themselves and not waste material just to get some extra money from their boss. I am truly grateful for our handyman and his wife who for some reason I can calm down when I’m near them, it has to be their positive energy and how well they work. So if you can find someone in your family that you can naturally settle down when around, that’s a good way to handle it. I have probably rambled on a lot, for that I do apologize. I have a lot on my plate today, woke up late and BH isn’t here to help me figure out priorities…
@Moltroub@Cathy1@BrianS@Blessed1@Kparry@Carol_Go
This is for you and all the others that are struggling. I don’t know if this is music that you like, but I have found out that this tune touches my heart. I find the emotional recovery from the rupture a bit hard sometimes. As you mentioned we have to evaluate our lives and our priorities after going through something like this.
I hope this is not against our community guidelines to post something like this. If it is, I’ll take it down.
What a great song! Thank you so much for the link! Apparently the dogs liked it to this morning as one came and sat by me then pawed when it was done playing. The other came loping over in time with the music! I need to put this in my phone so I can listen to it everyday.
And no ma’am, music as long as it’s not promoting hate, murder, rape etc is perfectly all right to post. We have several links to music that has helped us along our paths in recovery under different topics.
. The stress and the overwhelming issues had me tell my neurologist and he put me on a medication that I don’t need to take everyday as it’s highly addictive. He knows me well enough not to tell me to be calm as it has those words have the opposite effect on me. He did suggest that if I would rest, hydrate and eat protein I might find some relief. If I can’t get to a medium of control, he wants to do another MRI/A as I’m not scheduled for one with the Neurosurgeon until 2023. For me, it’s tradespeople I’m losing my temper with most of all. I really want them to do their job right the first time, clean up after themselves and not waste material just to get some extra money from their boss. I am truly grateful for our handyman and his wife who for some reason I can calm down when I’m near them, it has to be their positive energy and how well they work. So if you can find someone in your family that you can naturally settle down when around, that’s a good way to handle it. I have probably rambled on a lot, for that I do apologize. I have a lot on my plate today, woke up late and BH isn’t here to help me figure out priorities…
