Hydrocephalus: Eye trouble and the stress of not knowing…

Hydrocephalus: Eye trouble and the stress of not knowing…

When you go from care (practically non-existent) to doctors using words like: “You are high risk”, “This is serious”, “This is important to get checked out, sooner rather than later”, it leaves you feeling unsettled.  The only way I can think to best describe it is, being abused – becoming accustomed to that way of life as “normal” until finally, you don’t know any better.  Or…being forced into thinking that your concerns are unfounded and, something you’re just imagining.  This has been me for the last (almost) 7 years.  I’ve become so accustomed to doctors dismissing my symptoms that I’ve started believing there’s something wrong with me (mentally).  They’ve certainly alluded to it in more ways than one.  The funny thing (not so funny) is, despite knowing that I’m not wrong and my concerns have always been valid, I started doubting myself.  I accepted my fate and saw no way out. 

Yesterday, I sat in the eye clinic waiting room to have my eyes checked. It was only upon the insistence of my GP, who uttered all 3 phrases above, leaving me at a crossroad.  Over the last 2 weeks, I’ve had visual disturbances, as mentioned in my last post.  It starts off with a blurring out of part of my vision, quite similar to when you get up too fast from a sitting position to trying to see through a wad of cottonwool. Blurred sections, moving flashing/shimmering lights on the sides and just impossible to read anything or focus. It normally lasts between 15 minutes to a few hours. I don’t know of anything which triggers it, there are no warning signs and, I didn’t have a headache after either – like when you get a migraine. I covered each eye to see which was most affected but both were exactly the same. I went from dismissing the first occurrence to freaking out with the second, in the space of a few days.  Then, Monday when it happened again, I decided to go and see my GP to get his opinion.   

He kept asking me, “Why didn’t you go to the hospital?”.  I had no answer for him and silently shrugged my shoulders. 

He wasn’t messing around and was so insistent that I decided to go directly to the eye clinic after leaving his rooms.  He even followed up with a call a few hours later to make sure I had taken his advice… 

A headache which started off subtly, earlier that day, had escalated while I sat for hours in the waiting room.  Occipital at first (the back of my head from ear to ear), throbbing on the left and right sides of my temples and moving to the top of my head.  Nauseous and tired, I was left wondering if there’s possibly a pressure buildup… 

This was probably the other reason why I decided to get it checked while I was having pain.  It’s weird but, I silently pray that the person performing the eye check, can see what I’m feeling at the time. 

Wishful thinking…I know. 

When you go to the opposite (almost extreme) end of medical care, it does a number on your mental status.  Don’t misunderstand, I am extremely grateful for the care I’m receiving now as opposed to before, I just need to get used to it. It’s not so easy to switch over immediately in the way you think and rationalise things a certain way, after being treated otherwise.  I’m aware that this could lead to nothing but I’m also aware that being told my ETV could be failing slowly, is just as real a possibility.  It’s unsettling and unnerving at the same time especially since I haven’t experienced ETV failure before.. 

At times like these, I do a constant internal check to challenge myself: 

  • Maybe I’m overthinking,  
  • Maybe I’m being too melodramatic,
  • Maybe it’s not as serious as I’m making it out to be… 
  • Did I get the order of events or symptoms right?
  • What if the GP is wrong and just overreacting? 

While driving to the clinic, I wondered: 

How is it that some of the people in my life expect me to just carry on in ignorance? They don’t even have to say it in so many words, their actions speaks volumes… 

If they were in my shoes, would they be able to practice what they preach? 

My eye check left me with a referral back to the Neurosurgeon.  Turns out, my eyes are perfectly fine.  However, my symptoms “sound like Occipital Migraine but, it’s unlikely as that normally occurs in one eye – not both”.  This in itself is an indication that “something else is going on”.  Just what that is, is anyone’s guess at this stage but, it appears all roads lead to my ETV possibly failing… 

At any given point in time, there have been opportunities to ask me how I feel about all of this.  Express empathy and try to walk a mile in my shoes.  But, hardly anyone has asked outright or with genuine empathy so, I’ll vent it all out here. 

There’s certainly no bliss in being ignorant of my situation for me, no peace of mind and no comfort.  No person in their right mind would willingly ask for brain surgery but, someone who feels they don’t have a choice…will.  The thought of doing nothing and possibly losing my eyesight…or worse…does not sit well with me.   

Raising the alarm and drawing attention to what I’m experiencing, is not attention-seeking tactics.  It takes a lot for me to get to this point.  

I think it’s unfair to have that kind of expectation from anyone going through some or other medical issue.  It’s even worse when they’re living with an incurable one.  No person can tell you how to feel or deal with something unless they’ve been through it themselves.  And, even if they have, their experiences might not mimic yours.   

So, if I lose the plot from time to time because it becomes a bit too much, then so be it.  I can’t keep trying to please everyone else around me and I sure as hell won’t make light of this situation.  My reaction to what happens on this journey, at any given point, is mine and mine alone.  Justified or not, I have nothing to prove to anyone.  I just need to survive this…until I can’t anymore… 

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