A repeat ETV (Endoscopic Third Ventriculostomy), performed on 4 May 2021, brain surgery #6, resulted in a haemorrhage during surgery. The effects of which have only escalated and is still ongoing. (Reading that post makes me realise it’s only gotten worse…). I have slowly been trying to piece it all together…
There are a few lasting effects following a brain bleed. These are the most noticeable to me:
- Confusion, memory loss or poor judgment.
- Personality change and/or emotional problems.
- Headache (nothing new with this one!)
- Struggling with words i.e. Aphasia
This is a BIG lightbulb moment for me personally. It provides validation. I used to beat myself up so many times, hurtfully uttering; “What’s wrong with me..?”, in frustration. OR, I’ve dismissed it saying; “My brain is glitching”. Also, my family usually make fun of me because I ALWAYS say “thing”! Now I know why…
Saying it’s a struggle, is putting it mildly. Truth be told, panic mode has been activated for a while now. I have been left to try and figure all of this out on my own, with no support from anyone. No warning or talk about what to expect. I think this has made it harder. If I had known, I may have accepted it sooner and, it would definitely have been a kinder ride on this hellish infinite roller coaster!
I have expressed my concerns to others however, it has been met with responses that have been less than ideal or useful to me. Some have even been downright hurtful…
I’ve been left feeling:
Isolated. Lonely. Anxious. And, the biggest question I’m yet to figure out; “What the F*ck do I do now?” (Pardon my French).
I can’t even begin to describe my emotional, mental and physical state to you. I have been dipping in and out of depression, feeling utterly helpless – not to mention useless! On my way up and out of that deep, dark place, I FULLY know that I am neither of these.
I am a problem solver. I need to know the answer to the problem or, at the very least, have a backup in place, else I can’t move forward. However, for months, I have been trying to move my train of thought forward. Instead, I am stuck! I’m talking concrete around my feet that’s set because I couldn’t get away quick enough! This is a seriously messed up situation I find myself in. I pray daily for a lottery win just so that I don’t have to work, and feel all this financial pressure. The burden of having to provide for myself and my family, weighs heavy on my shoulders. Yes, money is the one thing that I feel will set me free, to a point where I feel sane. At the very least, it’ll give me time and space to breathe, and figure out my next move, allowing for the snails pace I’ve been thrust into.
The current state of my brain has taken “being like a duck”, to a whole other dimension, not even level!
I suppose the “joke” my husband made when I tried to explain that I have literally lost some brain cells, a few weeks ago, is his way of trying to “help”.
“You didn’t use all of them anyway”. Whether he has a point, or not, I fail to see the funny side of it but, forcefully do. A case of if I don’t laugh, I’ll cry (I’ve done enough of that!).
VENT: I have become one angry person because of life. The saying “life happens for you” just does not compute in my (literally) messed up brain. Maybe it will reveal itself in time to come but, right now, I just don’t see it.
PS. This post has been written over a 6-month period, if not longer. Every chance I get, I add my thoughts. While I have words left inside of me, I’ll continue to spread awareness about Hydrocephalus!