Since my last post, I can’t really admit to feeling much better. I sincerely wish I could just lie and shake this shit off me. Click my fingers and voila! But alas…
My MRI results have come back with normal ventricles and a patent stoma – Meaning, my ETV is doing just dandy…or is it?
I practically stopped eating 3 full meals exactly a month ago (I’m down to 1 a day…if I’m lucky), lost 7.5kgs in a space of just 2 weeks and despite me forcing the issue, I’m still not able to get much into my body. The headaches continue, bearable but annoyingly still there. Daily and constant nausea that’s become a feeling of norm and insane tired…all the time. I’m saying weird things like telling my kids to put their dishes in the fridge which sends them into a laughing fit while I silently grow aware of this new development. My energy levels have dissipated and the number of times I’ve lied and said “I’m fine” to anyone who actually notices I look as off as last week’s dinner…unreal.
I’m tempted to say, ignore the signs and symptoms for concern listed on just about every article associated with Hydrocephalus, Shunt/ETV failure. The medical specialists do, they don’t even bat an eyelid…so why shouldn’t you?
The Neurologist I saw 2 weeks ago, haunting me to my core…”Your MRI will probably show that everything is normal…”
He left me so deflated to the point where I just feel like drowning myself in this God-damned CSF till I can’t breathe anymore.
How many of you have fallen fate to depression or worse because of the medical care you’ve received? (Or lack thereof)
The letter to my GP, from said Neurologist, has depression listed as a possible cause for my symptoms…Almost a month later and I’m still not sure how to deal with this damned string of words.
My consult with him went a little like this…
He told me that I looked terrible…apparently he doesn’t “get paid to be nice“…go figure… As expected, he wasn’t in the least happy about my decision to not take the anti-depressants he had prescribed. I vaguely remember us going back and forth on the pros and cons of all kinds of medication and their side effects. How “I shouldn’t Google everything and listen to other people’s stories of what happened to them“. It turned into a similar sort of “fight” as the surgeon who took offence to me talking about people who have experienced ETV failure outside the text book norm vs his xxx amount of patients. Though in this case (according to this Dr), it appeared “I am looking to prove me right and them wrong“. I told him (respectfully) about my initial diagnosis where I sat with a Neurologist just like him, convinced that I had abused pain meds and with a steady treatment on the right medication, he would get my migraines under control. This very Neurologist left my hospital bed, tail between his legs, after a lumbar puncture indicated high pressure and the need for my first ever brain surgery.
He swallowed hard at this revelation…
But, just as I was about to give up the fight, he says “It’s your head and you have to do what’s best for you“. This was like fuel to the dying fire inside of me so I said, “Yes, it is my head, which is why I’m fighting this hard. It’s also the reason why I won’t do anything that my body tells me not to do because I know first hand how I feel“.
As if to drive a nail further into my Hydro coffin, he asks “A few months ago when I saw you, you were waiting for a hysterectomy and said that your moods were affected. Is that still the case?” I told him that unfortunately it didn’t go away with the operation and is still a problem. He told me that in his “expert opinion“, he still felt that I needed to go for “therapy to help with my moods as well as go on the anti-depressants but maybe a lower dose“. I looked him squarely in the eyes (feeling like I could just drop from sheer lack of energy) and said:
“How would you feel if you haven’t been able to eat anything since last Thursday (a week ago), feeling like crap, nauseous all the time and having to fight a medical system to be heard. Knowing that you have a condition that could potentially kill you if left untreated and one that leaves you second-guessing yourself every step of the way. What do you think your mood would be like right about now?”
It was all I had left in me…the fight was over and I gave up at that point.
Neurologists (like Neurosurgeons), in my opinion, serve a good purpose when they actually look at their patients outside of their textbook norm! Yet another reason why I feel like giving up the fight and letting nature takes its course. Simply because all of this is taking it’s toll, not just on me but on my relationships as well. Dealing with an invisible illness, leaves the person at the mercy of scrutiny from everyone (including loved ones)…you undoubtedly start looking like a crazy person.
If it is all in my head, then surely this will vanish like a mirage in the dessert…
Who knows, maybe succumbing to the push in the direction of la la land is exactly what I need to finally be free of having to worry or care about whether or not this crap is real…