Brain Aneurysm Support Community

Trying to get my life back

#1

Hello,

I’m new here and have learned so much from reading the site I would love some advice.

I had a ruptured aneruysm just over 4 months ago. I was fortunate to be able to have it coiled but they were unable to coil the whole aneurysm so suffice it to say one remains. Apparently coiling the whole thing could have caused some serious issues so now i am being watched by my doctor to see if any issues arise. I spent 2 weeks in the hospital and the rest of the time working towards getting better. I have returned to work part time, and i am hoping that I will soon be allowed to return full time. I recognize how incredibly lucky i am and appreciate those around me immensely.

Here are some of my issues…

  1. Although I don’t believe it to be maliciously, i see the pitiful looks people give me or feel like they are checking to see what my deficits are. I am incredibly fortunate to not really have any, but it bothers me so much to see the pity or feel like people are checking me or my actions out. I think this is more a me problem but i really struggle to get over it.

  2. I really want my life back. I want to return to work fulltime…it’s a position i enjoy and have worked hard for. I have learned a lot these last few months. I have cut out as much stress as I can, eating healthier, no alcohol, exercise (moderately) more but i feel like my doctor will take a long time before I can return fulltime. Am I missing something? Am i not taking this seriously enough? (I feel I am, but his hesitancy makes me wonder.)

It was a really frightening time for myself and my family. I had tremendous support from family and friends. I am so thankful to be here and know how lucky I am. But i sway from just wanting my life back, for people to treat me nornally and go about life with my new normal but I wonder if I am doing it wrong. Am I letting my pride or stubbornness lead my way and I am sicker then I feel? I just don’t know what to do. At the end of the day what matters most is staying alive for my family. How do you decide what is right and when to stop pushing? I will be the first to admit putting my life in someone’s hands is hard for me and i feel like the decisions i want to make aren’t available to me. I would at least like to try!

Can you tell me how you cope? What i might be missing?

Sorry for the novel and thank you in advance for any advice!

#2

I think the biggest thing you need to remember is that you’ve had a traumatic, life changing event. You can no longer compare who you are NOW to who you were THEN. As you mentioned, you have a new normal, and that’s where you need to focus your attention.

You need to be very attentive to your body as well. Pushing is never a good idea - a little, yes, but in a minor way. Pushing too hard, too fast, runs the risk of pushing back your recovery overall.

I think you’re on the right path, reducing stress and all of that, you just let your recovery progress naturally. You’re only four months out, that’s really not very long at all. And you’ve come far enough to become frustrated by your progress – which is a good thing! That means you’re moving right along!

You may want to take up meditation as well. It’s a nice way to help keep your stress in check, to relax, and to take time to listen to your body.

azurelle

#3

Thank you! I appreciate your comment and I will look into meditation. Slow has become my new normal, I am good with that, i guess I am just pushing the envelope a bit too much.

Thank you again.

#4

Hey Teri,
For a start, +1, +1 and +1 to everything that Azurelle states. It takes time to get back to ‘full normal’, don’t push it. I say this from experience because I did push it, I pushed TOO much, too soon and my body pushed back. So me being me I pushed myself even harder. This was bad, super bad. I ended up doing myself a major injury requiring further neurosurgery and this has now knocked me so badly that the dr’s tell me I am unlikely to ever be able to return to work. Disappointment does not even come close to explaining my situation.

It sounds like you are doing everything that you can to minimise stresses and manage things the best way you can, but so are your dr’s. As Azurelle states “…you need to remember is that you’ve had a traumatic, life changing event.” Your dr’s are aware of this and are aware of the consequences of not taking the time needed for your body to ‘fully’ recover. To say I’ve had a bit of experience with neurosurgery would be an understatement, I’ve required 6 so far. The first couple I recovered fairly well from and thought that the additional operations would be the same sort of recoveries, I couldn’t have been more wrong. I can be (or am) a stubborn individual and had the mentality that this thing wasn’t going to get the better of me, in hindsight my body was giving me signs that things weren’t quite right. But me being me I didn’t listen. My body was telling me “Laydown or I’ll put you down” and it put me down HARD, landing me back in hospital needing further surgery. So, ahhh, don’t do that. Listen to your body, it will tell you, but only if you listen.

For me the idea of putting my life in someone else’s hands was so very foreign, if someone is in charge of me its ‘Me’, but I’ve learnt the hard way that we must listen to the dr’s and until they give you the all clear, don’t push it. Just don’t. It’s not worth it.

One thing I can assure you of is that this can be a long slow journey (It’s been 5 yrs since my last operation), some day’s are good, some days not so good and some days you wouldn’t wish on your worst enemy (OK so maybe you would, but they never seem to have days as bad as those), but remember those bad days because they allow you to celebrate the good days even more.

Merl from the Moderator Support Team

#5

Thank you Merl. We sound like really similar people. I know that all of this is a time thing. I have slowed life down incredibly and I guess this too is something i need to do the same with.

I appreciate you sharing your experience.

Thank you to both of you for responding and giving me more perspective to consider.

Healthy thoughts to all!

#6

Hello! Reading your words are very much like reading my own. I felt(and still do feel) this same way. I had a ruptured aneurysm and craniotomy with a 2 week stay in the hospital, and was allowed to go back to work part time about 10 weeks after surgery. By the time I went back to work, I was going crazy. I wanted to be back to my “normal” life and I wanted people to stop asking me how I was doing. I was so so blessed with the people in my life through my whole recovery, I never had to worry once about being off of work or getting my kids around. It truly was amazing! However, I know what you feel about people just watching to see if there was something wrong. Or they would ask “So everything is ok? They don’t expect anything more to happen?” Like a deficit would just show up at any time. 4 months after surgery, my surgeon told me to “life my life as I had before, back to “Normal””. So me, being my stubborn self, upped my hours at work and tried to do everything I had before my surgery. It only took about 2 weeks and I started having horrible headaches again. One headache lasted about 2 weeks and nothing I did could get rid of it. I finally admitted I needed help and called my primary care doctor. She gave me quite the speech on over doing it and it being ONLY 5 months since my BRAIN surgery. I said “I know its already been 5 months!” She wasn’t happy and told me I had to cut back. It has been 6 months now and I still struggle with all of these things. Its hard for us to admit we can’t do everything we used to do, and I still try to do it all. I kick myself every time! I still end up with headaches pretty bad when I’m being stubborn and wanting to just be “normal”. My husband keeps me in check some days and says he heard the doctor say that I should get back to life as normal, slowly. Conveniently I did not hear those words at all when talking to the doctor. I never wanted to hear those words, and I still hate hearing them. Although I can say, as hard as it is for me to admit, they are right! Slow and steady wins the race!

1 Like
#7

Thank you. I know each of you are so right. I have slowed down considerably, I have spoken to my boss regarding if I come back full time it is all reliant on my health staying the same, i just want to try. My husband is incredibly vigilant in keeping an eye on me! I’m sorry you are still getting headaches. I am fortunate enough I haven’t had any in a while.

I guess I am just looking for a plan. (Even though I know everything can change quickly.) I am honest that i know I couldn’t do a 40 hour week, maybe close but not full. I am also not willing to compromise myself just to return. I guess i just want to try.

It’s hard to verbalize really. I know I don’t ever want to be back in that place. In all honesty, i am petrified of going to the doctor this week and find out something is amiss. Work for me i guess makes me feel like I am working my way back to normal.

You have all been wonderful and put a lot into perspective for me. Now I just need to take a breath and be a better patient and listen to my doctor.

Thank you again!

#8

Hey Teri,
“It’s hard to verbalize really” …OUCH…Ohh boy does this strike a chord with me. Often others can be great at showing sympathy, but empathy, well that takes experiencing the same thing. We never want to go through that again, but in all honesty we didn’t exactly have a choice to go through it in the first place. I know for myself I thought the first surgery was bad enough, but after having the first the subsequent surgeries were worse because I knew what was coming (Well, I thought I did anyway), but each subsequent operation has been worse than the last and I never ever thought that would be possible.

My wife, like your husband, is also extremely vigilant and although I try not to show my pain, she can see through my charade. And although I did attempt to return to my former employment, after driving myself into the ground she simply told me “STOP”. But it took someone outside of me to identify that in all reality I was doing myself more harm than good. She was more accepting of this reality than I was.

It truly sounds like you are a bit like me in that I am my own worst enemy. There is nobody who is harder on me than “Me”, but I have learnt that I need to adjust my expectations and give myself a break after all I’ve “…had a traumatic, life changing event…” as Azurelle puts it.

Merl from the Moderator Support Team

#9

It’s so true. Not being hard on myself is hard but I know that is what I have to do. As a family we had to learn the hard way how quickly life can change and it is a lesson we have all taken to heart.

I go to see my doctor tomorrow and hope my latest mri came out okay. We have orchestrated a beautiful Christmas for our children and family and that would really put a damper on things. I don’t want to go through any more or put my loved ones through anything. I guess I will know soon enough.

In the interim, i do a lot of reading, thinking, Contemplating and try to come up with questions for my doctor.

It sounds like you have been through a lot! I wish you the happiest of holidays and the best of health to all on the board in 2019!

1 Like
#10

Hey Teri,
I’m often saying “None of us are here by choice… …who on earth would choose THIS?? Not I, that’s for damn sure…” I was so very fortunate in that prior to all of this I spent 10 years working with people with disabilities and have seen some of the ‘worst case scenarios’ and thankfully I can say (selfishly) "Well, at least I ain’t ‘there’ " and I know I so easily could be. Sure things are not good, that I will admit, but I also know they could be so much worse. So in weighing things up I can see some positive, although at times I do still remember life before and am disappointed that I haven’t been able to recover to the point where I left off.

I too do lots of thinking and contemplating, sometimes too much and some people talk of ‘acceptance’, my acceptance ebbs and wanes. Some days my limits are fairly obvious on other days I push those limits, which is not always a good thing. But it does show me that I must listen to my body’s limits, even if the mind believes it can do more. This recovery thing can be a long slow process, pushing those limits too far only makes the recovery longer. I can say that here and now, but tomorrow I don’t seem to be able to take my own advise. As I say 'at times I’m my own worst enemy".

Merl from the Moderator Support Team