Hello, I’m a new member and need to vent. Brief history… I had stents placed in my left transverse and sigmoid sinus’ Oct ‘19, prior to that I spent almost 10 years dealing with neurological problems and trying to find a doctor that could help me. I had multiple doctors, after multiple imaging and procedures, tell me nothing is wrong and to see a psychiatrist. After my surgery I thought my life would completely turn around and everything would be great. For the most part I do feel better, physically, I still deal with headaches and have some neurological problems, but my quality of life has improved. Mentally… I’m a mess. Getting sick stole everything from me. I was in nursing school and had to drop out because my brain wouldn’t work. My memory was gone, I was having panic attacks, mood swings, I could barely care for myself so I didn’t trust myself to care for others. I lost my dream of being a nurse, I worked my whole life for. I’ll never get to be a mom. All my friends abandoned me when I was sick, I’ll be honest I wasn’t easy to be around, but aren’t friends supposed to be there for you? I feel like getting sick stole everything from me, I feel hopeless and like no one understands what I went through. I lost all trust in the medical system, something I worked so hard to be a part of. Everyone acts like I should “just get over it”, because “I’m better”…. But I’m not better. I’m bitter and angry, and my brain doesn’t work well, which is frustrating. Most doctors don’t understand what I went through, so why should anyone else? I feel alone and need something to help me make sense of this horrible thing that happened to me. Thanks for listening.
Hello, and welcome to our group. It sure sounds like you have been through a lot, and I mean a lot. I am happy you reached out, and I think you’ll find you’re among friends. While we are all different, we do have a lot in common and a far better understanding than most. The unseen illness is always most difficult for people to comprehend because we look fine. We have a great deal of experience here, and many different challenges faced. I hope we are able to help you out a bit, and feel free to vent! We are here to help as we can. Take Care, John.
Welcome Breezy, I wish I could, but “it ain’t me babe” that can “make sense” of your ordeal. I’m not sure anyone can, especially you, when you’re in the midst of the suffering/chaos. Probably, it’s better not to try, it’s a waste of time and energy.
Sorry nursing didn’t pan out and some of your friends disappointed you.
I have a friend that has horrible chronic pain and she can say some hard stuff. I’d never abandon her but it does make me very angry for a bit. You may owe an apology to someone and not even remember why.
The good news is that you survived a difficult surgery and it probably helped you. That’s huge. You’ll find good, maybe better, close friends and a career.
I don’t know anything about panic attacks but I have experienced lots of memory loss so I know how frustrating that is. To feel like you can’t trust yourself/memory can feel scary and fear makes us angry. Please try to not beat yourself up for these normal reactions.
Best wishes, Greg
Breezy,
Having neurological symptoms that cannot be explained by various neurologists or tests certainly does not leave one with confidence in medicine, does it? How did you end up having surgery?
You had very high expectations of the surgical outcomes. I was quite disappointed by the very slow progress after surgery. I remember wondering when I would be able to return to my position…as a critical care nurse.
I explored different types of nursing I might find engaging. But, they all demanded much more energy and multi-tasking abilities that I no longer possessed. This realization, left me deeply saddened. Still, I maintained my licensure.
I think almost all of us here have dealt with others who have great difficulty understanding the post-operative psychological ‘trauma’. We NEED that understanding, Yet, most others are not equipped or choose not to.
The only thing I can think of to possibly ease the feelings you experience, is to see a neuropsychologist. They are usually associated with large university medical schools. The test findings may assist you in understanding your deficits and adapting in practical ways. Acceptance and finding new means of being productive can do much to ease the psychological effects. But, it begins with US.
We cannot count on others to “get it”.
‘Hope things change for the better.
Welcome Breezy. Everyone has different experiences w AVMs. I didn’t know what they were until a vein ruptured in my brain. The best thing I’ve found is to see a therapist to help deal w my issue of not working and not driving . I try to make a list of little things to do each day to try and feel normal. As I do a thing I check it off the list so I remember I did it. I am lucky that my Dr was on call when I had my problem as he is very experienced w AVMs and even invented a device to fix small ones.
Hi. Your frustration is completely understandable I went through a similar phase after my AVM ruptured, I want to help you by sharing a book that I wrote with the hope is that others can also stay hopeful and find peace while dealing with physical, emotional and psychological pain.
Please do check it out I really believe it can help here’s the Amazon link for it:https://www.amazon.com/gp/aw/d/0228827450/ref=tmm_hrd_swatch_0?ie=UTF8&qid=1685464957&sr=8-1
Breezy,
Now that you vented I bet that felt great? I think everyone on this site has had to live with some level of pain, discomfort, uncertainty, etc. We all have one thing is common, we have hope, we still dream and we will never give up. Not all doctors know what they are doing. Maybe you can reach out to us and someone will give you a name of a doctor that helped them with similar problems. In the meant time if you want to be a nurse or help someone in the medical field then find a way. Either online or in person. The man upstairs spared you for a reason, which means you are destined to do some great things. Lets get you with the right doctors, I can’t wait to see whats next for you.
Thank you everyone for your responses. Sorry it took me so long to reply to you all. I started therapy to work through all my emotions and it is helping. I’m still struggling at times, but I don’t feel completely consumed by everything.
I applied to a University and was excepted, I will be working on my Bachelor’s for Health Administration. I’m really nervous, but also really excited.
I have never been a religious person, spiritual, but not religious. I was raised by an Atheist and lost my faith pretty young when I lost my grandmother at 8 y/o. However, I have always felt there’s something greater than me. So, I started praying and it feels good. I know I’m still here for a reason and I’m not giving up now.
Thank you all for the support. I don’t feel as alone. <3
I think when you’ve been knocked so much by situations, it is very difficult to get back up. Simply getting back here is a nice, small step. I’d say carry on with the small steps – they’ll soon add up.
Very good to hear from you again.
Best wishes,
Richard