I am frustrated. my work is awful and it is causing me serious mental and emotional issues and my mom is sick.
Normally, before this head thing, I could handle it better but it is overwhelming. It’s like if i knew I was going to struggle with my emotions and mental acuity, I would have left it there. Let me go back and make that decision again.
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Sorry Abby, there’s no going back and even if you could, there’s no guarantee the longer term would have worked out any better, in fact, it could have been a worse outcome ie a rupture/stroke. Second guessing yourself now is a waste of time and energy. But many of us (yes, me included) do 2nd guess ourselves, but the reality is… We can’t go back. We have to learn to manage the best way we can.
Merl from the Modsupport Team
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It will eventually lessen Abby but as Merl says we can’t go back in time. Though for other choices in my life I wish I did have a Time Machine. But as for one who ruptured I can definitely assure you that it’s not the better alternative than elective procedures to repair one that hasn’t. After I ruptured both my parents had a decline in health and eventually passed away. It was very difficult to manage their care. My Neurosurgeon grounded me from them for three weeks! I had zero affect through those three years and when my Dad passed first my Mom couldn’t understand why I was not crying. Then when she passed away a year later, the RN at Hospice called and said she had gotten Mom ready for me to come see her. I said no, she’s dead and I’d been with her for 13 hours already that day. She didn’t know what to say to that.
Please be patient with yourself. Remember to hydrate, eat the proper amount of protein and don’t forget those electrolytes! Along with rest, your brain really needs them all to help those neurotransmitters reconnect.
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A big, HUGE, **MASSIVE +1 ** for this line. I’m the very last person to be talking about patience. I could have the patience of a saint for my former clients, but I had no such patience for self. I wanted to be right and I wanted it right bloody NOW!!!, but I can assure you, don’t push it or you’ll end up pushing your recovery backwards. Don’t do it.
One thing I learnt through all of this is that you cannot force your recovery to happen quicker or better, in fact the more you force it, the worse the outcome. Now, I say “I learnt” when what I should say is “I learnt about me…”, like I said to you earlier and I’ve said to many people before, 'Some people recover remarkably well, almost unaffected. For others there can be issues and for some those issues can be an ongoing battle". We’re often given the perception that surgery will ‘Fix’, I think it’s better to think of it more as ‘manage’ an issue, than fix.
Me, personally, I was told my first surgery was a ‘Fix’, but it wasn’t. Annoyed? I was beyond, absolutely BEYOND annoyed, beyond frustrated… …I was angry. All the medicos would say “Well, it wasn’t anything we did. It must just be YOU!!!” like this was a choice. Like I chose to be ‘here’. Nobody, absolutely nobody would ever want to be here, not by choice. I’m presently steering down the loaded barrel of neurosurgery No.7 (I have another appointment on Friday (GULP)) and yea, I’d love to go back to before No.1 and reassess, but I can’t.
As for work, after my 2013 surgeries (5,6) I attempted a few times to return. I changed my work hours, I changed my role, altered my client list to lessen the load, both physical load AND the mental/emotional load. I altered my medications to manage better. I tried a bit of everything, but none of it worked. I took that anger out on myself by pushing my limits. “I could before, so, I can now” only I couldn’t. My wife could see what I was doing to myself, driving myself into the ground trying to get back to normal. Eventually she simply told me to stop. I had to accept that things weren’t going to improve any further, no matter how much I push my limits. I had to learn to live within my new limits. And I HATE it. I want the old ‘Me’ back, but that’s long gone now.
Abby, none of this is easy. NONE OF IT, but this is a time to be kind to yourself. As I’m sure I’ve said to you before ‘This is a time to take the time your body NEEDS and not just the time your mind expects’. I say this because I did the exact opposite of everything I’ve recommended here, and I kick myself every day for it.
Merl from the Modsupport Team
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It’s probably the hardest lesson we have to learn. More so I think if we have a personality of being the helper and are/were accustomed to putting that energy towards others. Add to that those of us who were or are helpers by profession and oh my gosh it’s worse!
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Nobody asked me if I wanted to leave it or take it out. According to my patient portal I was having very coherent conversations the whole time but I don’t remember it. I ruptured and had a SAH stroke. Nobody told me I had a stroke. I learned when I was reading my patient portals. I can’t tell you it would be better or it would be worse. I can tell you it isn’t easy and not a walk in the park. If work is too much, quit. There is really only 2 options. I couldn’t have gone back to work for all the money in China. I have a hard time putting a meal together but we just keep putting one foot in front of the other and do what we can do. That’s the only choice we have. Try not to dwell on it. It’s hard but it’s possible to do.
The language the medical field uses can be quite confusing can’t it? When we rupture, it’s called a Subarachnoid Hemorrhage and it’s also called a Hemorrhagic Stroke. But then there’s an Ischemic Stroke that can occur as well, which is why they get so concerned when we have vasospasms. In NSICU, a doctor I didn’t care for and wasn’t my doctor though he said he was told me I had a stroke. I told him no I ruptured. I also told him never to come back into my room again. That doctor was probably over the CCU part of the unit. One of the other Doctors I did like and the Med Student I did like explained the confusion. Always ask for clarification.
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I totally agree. We have to work with what we have in a positive way.
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We certainly do and I have to say we have all done a fine job. It would just be nice if the neurosurgeon would tell you what you are dealing with. It could help explain the sudden crab walk you do in the middle of rehab. Or not being able to hold your right arm up to catch the ball and get hit in the face with it. Just smile and do your best parade wave as you walk by sideways and wear a baseball catcher’s face mask
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Mary, your rehab specialist should know, maybe not their assistant, but the one over them. Wouldn’t hurt to ask if you’re still in rehab…