New normal?

[Hopefulhealer1]

Hello everyone,

My emotional health seems to be taking a toll as I slowly come out of denial about my aneurysm rupture from a year ago. My support group doesn’t understand why/how I’m having a hard time accepting my new life. I am slowly realizing that I cannot do as much as I’ve done before. How has anyone else been able to accept this/ deal with their new normal? Also, I keep having feelings of low self worth/ feeling like a failure because I am not sure what caused my aneurysm. But I regret not being able to prevent it. I have talked these things through in therapy but I want to hear what you all have to say, thank you.

[DickD]

I think this is entirely normal! It’s perfectly normal to struggle with a new normal but you’ll get there and being able to talk to people about it who do “get it” is a good resource to have. I think that’s part of what we are here for.

Now, I’ve avoided a bleed. I’ve got a slightly different condition (but it presents the same risks) and I hang around here to help @Moltroub out, rather than be a normal member of this community, so I can’t help you with 1:1 direct experience of a bleed but I had trouble with my prostate a few years ago and there’s a story attached to that that I’m at least half prepared to share

Basically, I had to have a catheter fitted and the area nurse who (literally) force-fitted the thing made such a hack of it that she didn’t successfully get it in (and I had to go to hospital to have one successfully fitted) and she actually drew blood It would be fair to say that after that ordeal, I felt terrible. Everything hurt and I felt like I’d aged to about 90. Awful!

At that point, I thought I’d need a catheter for life and I was so disabled by it, it was shocking. However, I got into a much better space about it mostly through time and through rationalising with myself. My rationalisation was mostly that there are other people in a similar or worse situation and they just carry on. Life with a catheter is still very doable and actually, once you’re peeing fewer times per day than in the run up to the crisis, life gets better in some ways.

Now, as it happens, all of this is behind me: I no longer use a catheter: so it is much easier for me to “look back” at it but with the support of others here who have gone through a bleed, I’m confident you’ll be able to get on top of how you feel about it and you’ll work forwards towards a new life that maybe has some things missing from it but other things that you can do that you’ll value more than you ever did in the past.

I hope something in these thoughts helps. I’m sure others will offer their perspectives, too.

Very best wishes,

Richard

[Moltroub]

Morning Ari! I have aspired to be many things, normal has never been one of them though. Having a few decades on you, I can tell you what you already know; we, as humans, are never stagnate. We are always growing and changing. It just becomes more apparent the older we get. A rupture makes it a bit different, but still just a change. It’s really hard to identify what we need to move forward and then to ask but you’ve got over that hurdle! Good for you!

When I was a wee lass, around 4 or 5, Bucky Green and I were going to get married, and eat tacos (my favorite) and hot dogs(his favorite) whilst living in a tent in his Mom’s backyard. Mom taught all of us how to cook and bake, clean the house and do laundry. Dad taught all of us how to mow the yard, check the vehicle’s fluids and change a tire before we were allowed to get behind the wheel and actually drive a vehicle. The four of us kids weren’t taught gender specific roles. We were taught to think for ourselves and be respectful of others at the same time.

My sister being the oldest, got married and started having children with a couple miscarriages in the beginning. Mom had me going over to her home and helping her with cleaning and cooking, her husband didn’t know how to do either. I also had to teach him to paint a room I think I was around 12-13 at the time . They started making poor life choices and dropping their children off at our house without telling anyone until the day they did it and I couldn’t pack up the camper and get everything ready for a big ride we were planning.

I started college at 16 in Ag Bus Mgmt part time. My parents didn’t want me to be a Psych major. Moved away from home to attend university as far away as I could get and still be in California to avoid out of state tuition and raising kids who weren’t mine. Unfortunately it didn’t pan out, it was still a field where women weren’t wanted. But I loved the University so I switched majors twice more ending up as a Dev Psych major. First client committed suicide, another student and I found her. I took full responsibility for her choice and dropped out last semester of my Senior year. Fell in what I thought was love but probably lust, bad life choice for me. Ended up back home, got a job, then joined the USN.

Finished university, eventually able to secure a job in my chosen field and then as a SW for the county. Worked there for about 15 years and popped my pipe. I’m recounting things in my life just to remind you everything we do, everyone we meet affects change in us and we have to learn to roll with the blows and rejoice in the good things.

After I ruptured it took me years to get to where I am now. Nothing happens over night, except the rupture it seems. Despite having a very large vocabulary I didn’t understand simple words and would ask anyone walking past my ICU bed what a word was and what it meant. It took me three weeks to get through that book which would have been a one night read for me. Had to learn to get the message from my brain to my feet to walk. Took me years to walk correctly and not like a drunk.

Occasionally, like yesterday, I mentioned I missed working. It comes up every now and then. The folks I were speaking with laughed saying they’d love to be retired. BH reminded them they wouldn’t want to be retired the way I became retired. That reminded me I don’t miss working holidays and dealing with substance abusers. Which thinking about it today is because I always worked Christmas Eve. BH and I have aggravated each other for almost 30 years now, a good life choice!

I’m fortunate that when I get the feeling that I’m no longer a productive member of society, someone in my life reminds me of all I am still able to do. They will remind me of how much I’ve relearned since I ruptured. It’s not been easy and it has required an immense amount of determination and patience. Many times I have to swallow my pride and ask for help. Asking for help is probably the biggest lesson I’ve learned since I ruptured.

I’ve typed way too much and my shoulder/neck is feeling it. I hope other members come and reply. Hang in there and remember to breathe. You are stronger than your rupture!

[Cathy1]

I ruptured eleven years ago this past week. The best advice I got from my rehab was to learn something new so I bought some canvases, acrylics and brushes and started to paint. What a great hobby! Of course I overbought small bottles of acrylics but I wasn’t out shopping for anything else. The next best thing I did was to get earplugs because I could no longer cope with muzak when grocery shopping. I also had to follow a list or I would have to return to the store many times which is such a waste of time to me. My new normal means I still have to nap in the daytime. I am okay with that too. I’m thankful that I can still cook which I love, drive, type and use my computer and tablet. I never could return to work because I couldn’t do more than one thing at a time since my rupture. There is one thing that I found out that I couldn’t do…change my mind if I was going to do something and someone wanted me to do something else. My focus on my tasks is to go straight ahead…not deviate left, right or backward. I have accepted that and friends and family are very understanding regarding my “limitations”.

[ModSupport]

Hey Hopefulhealer,
My name is Merl and I’m a member of the Modsupport Team here on Ben’s Friends.
Ohhh yea, I’ve been there too. Some people have the idea that they operate, they fix and life goes back to normal. But sometimes this simply is not our reality. When you break your arm, it affects your arm, 6-8weeks later it’s all healed. But we’re talking about the brain and that can take much, much longer and that healing takes time. Some people are of the mindset that once the wound itself has healed, it’s all healed back to normal. Well, don’t I wish. I’ve tried to educate others on this reality and it’s like you can see their eyes glaze over, or others come out with that “ohhh, you poor thing…” attitude, wanting to wrap you up in cottonwool for fear you may break.

The mental side of things… …OMG… …it took me years to get to some kind of acceptance in myself. I didn’t want to accept THIS, so I fought against it. This was the worst thing I could have done, but I needed to at least try to get back to normal and try as I might, my symptoms only increased. As I’ve said to others, I may have fought, but I was only fighting with myself, bit silly really. I couldn’t actually see it myself. It was my wife who simply told me “STOP!!!” she could see, I was driving myself into the ground.

That acceptance thing is not the same for everybody. Some days I don’t have a problem, but some days my management tools don’t work and my symptoms overwhelm me. I’ve learnt I have to be SUPER flexible to manage me. Other’s don’t understand and frankly nor did I. All of my ‘normals’ my tolerances had up and vanished. Previously simple tasks were now a challenge and I got so frustrated with myself. Grrrrrr. “I want the old ‘Me’ back.” But that was long gone.

I ‘try’ not to go into the ‘Why?’ of it all, because there is no definitive answer. Initially, sure, why, why and why? But nobody could answer it, least of all me and the reality is ‘why’ is in the past and I can’t do much about the past. All I can do is manage the ‘Now’. There’s an old saying “If you keep looking backwards, you can miss the things right in front of you…”.

This journey is not easy and if anybody ever tells you it’s simple, they have never been in this situation themselves, so how could they know? We know because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

[LauraE]

Hi there,
I can relate to how you are feeling and will share a bit of my experience.
I’m 2.5 years out from my rupture along with multiple surgeries to deal with 2 unruptured annies as well. Im at a new milestone because I’ve decided to take medical retirement from my rather high-stress job.
For the first year I operated on the assumption that I’d be going back to work. As time went on I realized this would be too difficult for me with all my ongoing symptoms and exhaustion.
But my decision was also fuelled by my bigger context. I have two young boys to raise with my husband, after we struggled with fertility and eventually had kids in our early 40s. I’m far kinder to myself of the realities I went through as a working mom. And not to mention that pesky global pandemic which turned parenting into an Olympic-level challenge for us all.
I too struggle with “why” this happened, and whether having Covid or the stress of the pandemic could have caused the rupture. While the Annie’s were there for a long time even my surgeon thinks Covid could have pushed me over the edge into rupture. Because of its poorly understood impact on the vascular system (I had no known risk factor other than being a woman).
But as others have written, there’s no definitive answer to the why. So I’ve worked to let that go.
I’m extremely lucky. I’m still able to enjoy life despite lingering symptoms. I’ve returned to my art which was always my primary love. Best of all I get to watch my boys grow up, and to be there for them. Not perfectly mind you, parenting is more challenging now but I’m finding strategies and support.
I’ve learned that I used to live with a lot of illusions— that my paid work was super-important among them. Work is important for many reasons, but it’s not the most important thing.
I’ve also learned the life can hold unwelcome surprises that are hard to get through. But on the other side, I get to live with a knowledge that many never get to experience: life is so short and so fleeting that the best way to live is right here, right now. Trying to control every outcome and living in the future is an expensive illusion. The more I can stay here now the better my life will be.

Hope this helps and keep reaching out. Your words help others!

[constance]

First of all we are all different, and we are all the same. We are different with how we deal with LAA Life after Aneurism. I am a chronic optimist and refuse to go down with the ship. I live my life out loud and feel that life will only get better, and it has!
Stay positive, take baby steps listen to what the pros tell you and breath in every moment. Be happy, it gets better as we move along.
I do hope that you find your piece of happiness and move forward. If you can’t do as much as you did before than do something different! As for all of us being the same, we all have a second chance, brain aneurisms aren’t for the faint of heart.
We survived!
Happy Holidays, and best wishes.

Connie

[Bigguns]

I am just over a year into my recovery. The best I can tell you is forget what others say or feel. No one. Including myself had the exact same symptoms as you. We was not married or divorced. Working 10 or 70 hour weeks. A computer person or a mechanic. My point is no one will fully understand what your going through. As the man of the house I had no choice. From an annerysym ( possibly controlled by stress ) 2 months after the surgery I was begging to return to work. Back to 80 hour weeks doing cement. I kept myself so busy I didn’t allow my self time to think or annualize what I was going through. But once life became routine again I started asking myself why did I go right back to the life that tried to kill me. It’s not really a right or wrong time…it’s when your up to it. You can’t be scared though if your number was pulled you can’t fight it. You lived for a reason and until you fulfill that reason your still gunna be alive. The best you can do is live your best life at your own speed and who cares who can’t keep up with you, if they don’t understand you then you don’t need them.

[Tony_P]

First, it’s important to continue therapy, both physical and physiological. Many of us who had ruptured aneurysms have gone through what you are describing. From feelings of dread to low self worth. But I can assure you, that for most of us these things do get better.

I remember the feeling of confusion and loss of balance and function and thinking, I can’t live like this. While it was much slower and much longer than I would have liked, I worked very hard at my recovery and never gave up, even after some major setbacks.

I can tell you that I have now 90% recovered and while that 10% off is my new normal, I am very happy I stuck to my recovery. In fact, I have developed new skills and new hobbies that I never would have thought of doing before my rupture. I love doing what I am doing now, so sometimes good things come of bad events.

Please stick to your recovery plan, no matter how desperate things may get. These recoveries are all about time, and you my friend are one of the lucky ones to have been given that extra time after a ruptured aneurysm. You survived for a reason, dig in and reinvent yourself into something even better than before.

You can do it!

[Ulsterscot]

Merl you’ve “hit it on the head” quite literally, I have never got back to "normal’ but with a little help I have gained acceptance. With the support of my loving wife a (and now a councillor) I am trying lo live again, I know I’ll never work again, but we can travel, so that has become our “new normal”. I try to be kind to myself, (this has taken years - I ruptured in 2016), accept what happened to me and move forward. It is hard sometimes, but time is a healer. I have lost a few friends (and some family members) who just don’t understand what I am going through, but you know what it just shows me they weren’t really friends.

all I can say is keep plodding along, and do the best you can.

[Carollou]

@Ulsterscot

new

I had an aneurysm break and bleed about two and a half years ago. It was a life altering event but I’ve come through pretty well. The one thing I must say is that it is not your fault. Don’t blame yourself. You were probably born with the aneurysm,. I am in my seventies. I took pretty. good care of my health pre aneurysm and now I’m much more careful about what I eat. But food did not cause the rupture. For that I have no answers but. please don’t blame yourself. Recovery time can be slow and you may need to adjust to some new realities. My new realities are that my balance is off … am working to correct it but that is the most significant thing. Also I can’t multi task anymore … One thing at a time. Fortunately I am retired and don’t have to worry about work. One other thing … people who haven’t had your experience may think that you can snap out of it but the isn’t necessarily true. You can work at it and congratulate yourself on your improvement. Be sure to congratulate yourself when you see improvement.

[Ulsterscot]

Hi Caralou,

I could have written that myself from my personal experiences. You are so true when you say people just think you can snap out of it. I am working hard at trying to accept my situation, and yes I was probably born with the aneurism, my brother died of one and my Grandmother and at least one of my aunts, which in a strange way helps, because I know it was not my “fault” but in my genes. My high blood pressure and work stress probably did not help, but I loved my work (that I can’t do any more. I am the same as you “one thing at a time”, but I am such a lucky man to have the wife I do, she helps me every day to try and accept things, but it is still a work in progress.

Thank you for your reply, it is so comforting to know I am not the only person going through this, and it can be done.

Regards,

Ulsterscot

[BobbiF]

Unless you have experienced it personally it is going to be difficult for others to understand. I had an extremely hard time adjusting to my new norm after my brain surgery. I have been able to work through some of the emotional changes and increased anxiety with support of counselors and having weekly sessions. Find what makes you happy and you will need to grieve what is no longer part of the old you. Embrace the you now and it will get better as time goes on.