Just because I’ve had brain surgery does NOT mean I’m cured.
There is NO cure – that’s the reality of the condition. If I have to face it then…it shouldn’t be too hard for you. And, just because I’ve accepted my reality, doesn’t mean I’m being negative. If anything, I’m being realistic in my approach. Not everyone faces a seemingly “negative” situation in the same way. That’s what makes us humans unique. Regardless, just because our views and approaches are different, it doesn’t mean you are right and I am wrong or vice versa.
I have days when I feel good and days when I feel bad.
Some days I can mask it better than others. I lose my temper, can’t stand noisy environments and struggle to grasp things at times. I’ll have days when I am strong and my attitude is in the right place but there will be days (guaranteed), where I will be a complete and utter mess. Word to the wise – steer clear and nobody gets hurt…
My memory is shite which makes learning anything new or “getting it” that much more of a struggle.
It’s embarrassing enough being forgetful, especially in a professional setting. Regardless, I either will or I won’t “get it”, that’s not up to you nor any fault of my own. I will silently feel inadequate in this moment but you will be none the wiser. I may even quietly beat myself up because I “should be better than this”, until I have a little internal pep-talk reminder to NOT be so hard on myself. If my coping mechanism is to ignore what you say because my brain needs to wade through all the fluff coming out of your pie hole, then so be it. I get just as tired of hearing you say, “I’ve told you this before” as you do, having to play the broken record. And, if I do remember things you expected me not to, don’t take it as a sign of me faking. Instead, be as happy for me as I am, that I still have memories in tact. FYI – We don’t choose the memories we retain or forget!
My feelings matter just as much to me.
I’m just trying to do life as best I can, under the circumstances, as we all are. I’m not looking for special treatment but I wish you knew how my heart aches from the lashings of your tongue. I sometimes feel we would be better off without each other because You, Me and Hydro just aren’t a good match. Two’s company, three’s a crowd – or something like that…And one is seriously here to stay, till death us do part. It’s hard enough living with this condition, than to still worry about how all this is affecting everyone else around me. I am also painfully aware of the financial burden, each doctors’ visit creates, without the reminder of the next point below. This is especially true when I come back with a “normal” diagnosis, test after test. Furthermore, it doesn’t help being made to feel like I need a trip to the loony bin. In all honesty, I’m starting to wonder if I shouldn’t rather just endure the pain and discomfort in silence. Like the saying goes “Suck it up, buttercup!”
“Doctors like you because all they see is money”
Money is at the root of it all…I’m not blind to that. Sure, there are doctors who are ruled by monetary gains. But, there are some who aren’t, the ones who genuinely care and want to help. It’s a challenge wading through the system to find the genuine ones. This statement evokes a fair amount of guilt, doubt and anger, I sometimes wonder if any of it is worth it? My constant search for answers to the cause of my ill-health, knowing fully that it all ends the same way for all of us anyway. One guarantee life gives each and every one of us is, No one is going to get out of here alive. And, just for the record, I most certainly don’t fear death…
“You’re always tired…When are you not tired?”
I may sleep a lot, according to you, but that’s just my body’s way of recovering and getting back to “normal”. Sometimes I fight a battle you will never know, see or even realise is going on. I’m not lazy, I just know when to listen to the loudspeaker inside. And, when I don’t, believe me – I pay the price. Cancelling plans last minute or staying home on a Friday/Saturday night is as social as I can allow myself to be sometimes. If that makes me unsociable, then so be it. My youngest son said this to me a few days ago. I just looked at him and thought, if only you knew how stressed being this tired, makes me. Knowing that my ETV is failing intermittently has me on high alert, even panicked to a certain degree. Waiting for the other shoe to drop, and having to feel like death would be kinder, before I can get further medical help. But, this is not something I tend to broadcast to my family – I’ve said it, explained it, they heard (are tired of hearing it) and simply DON’T understand.
Forgetting I have Hydrocephalus is NOT an option for me.
I do forget, sometimes, that I have this condition (oh how lovely this is at times). Even if it is only for a short while. But…I have my reminders. (The mind may forget but the body’s physical reminders work perfectly fine). The torture chamber I’m confined to when the pressure is high has no escape route, believe me, I’ve checked all the exits – there are none.
The little reminders aren’t always subtle…(and not limited to this list either)
- The pounding headache which wakes me in the middle of the night or early in the morning.
- Insomnia which gives me a booty call (not in a “let me melt all your stress away” kind of way), anywhere from 2 to 4am, leaving me to deal with the effects from lack of sleep.
- The nausea which takes over and the lack of movement in my limbs…
- When my world is rocked by dizziness and an unsteady balance, it’s nothing to scoff at.
- The stress and worry of wondering, “Is my treatment option failing?” (This plagues me more than I care to admit, on any given day).
I laugh because if I don’t, I will cry and that doesn’t do anyone any good – least of all me.
My eldest son called me a “real space head” a few days ago. The way he said it, made me laugh but I had to ask him why he said that. His response, “Because sometimes you just “space out”. You know like when we’re driving somewhere or you walk into a room and ask out loud “Where am I going?” Or “Why did I come in here?” Or “What am I looking for?”. I smiled and simply responded with, “Yes…I guess I do, do that”. So, if that makes me a space head then…Meh! At least we could laugh about it.
I wish you knew just how hard I try to be like a duck (calm on the surface but paddling like hell underneath).
I’m not faking any of it and fighting an invisible condition, amidst a system which doesn’t always work, is enough to test anyone’s sanity. I’m no longer the same person I used to be, pre-diagnosis but, I’m doing the best I can. I may have lost some things due to this condition and brain surgery yet, my sarcasm and brave facade are still fully intact. I guess this makes me a difficult contender at times…I apologise.
One thing I won’t apologise for though…having this condition. We all endure the things that this life throws at us because let’s face it…Life happens. I’ve had some lemons handed to me on my journey…Some have been surprisingly pleasant tasting (probably more of an orange) and others NOT!