In one of my previous posts: “How I cope is much the same as being like a duck”, I talk about the best advice I was given by my ex-manager Ian, after my diagnosis and first brain surgery. I struggled at work, to get back to a version of my former self (who seemed nonexistent). Also, I felt the full effects of Hydrocephalus and recovering from brain surgery. Truth be told, I’ve had to follow this advice ever since (May 2007).
If I had wings I would fly away…
As much as it has aided me and seen me through some tough times, I have to admit, it may have been my undoing. I feel like I’ve just added too much weight on my shoulders and maybe, just maybe, what I didn’t learn, I need to start applying. You see, a few days ago I had a revelation;
This revelation was brought on because last week, I had a continuous headache, felt nauseous and just exhausted. It concerned me to a degree. Unsure if it was Hydrocephalus or stress-related (life and/or work), I kept a close eye on myself. The timing of what my own internal analysis revealed to me, was so welcoming and eye opening, to say the least. It made complete sense that my symptoms were, highly likely, not Hydrocephalus-related. So, I rested as much as I could over the weekend.
With that said, feeling this level of uncertainty and effect hasn’t been without cause either: I’ve had quite the uphill battle over the years, from the time of officially being diagnosed, with doctors gaslighting me. This is probably the biggest reason why I’ve kept at it, I simply had to. Also, in the back of my mind (constantly) is the upcoming MRI in May – a year after my 6th brain surgery. This is something I remind myself of too, I’m technically still in recovery or, at a minimum, have been affected in a negative way. Left with cognitive challenges for a start!
It’s done my head in (literally and figuratively), thinking about how I got to this point.
When you’re fully into it; married, kids and working, and life gets interrupted by something like Hydrocephalus, there’s a tsunami of imbalance. What you thought you knew before, is altered in ways you could never fully comprehend. It confuses you and causes you to work so much harder – at EVERYTHING. The fact is, the person you were pre-diagnosis IS different.
I feel like a waste of space..!
I know I’m not useless. I know I’m not incapable. But, I do know that there’s a difference in me. It’s affected me in ways I fear will have an even bigger consequence on my life to come. My abilities have been altered and, not in a good way. I still feel the loss of self in so many ways and, on so many days. The struggle is real and never ending, much like the endless brain surgeries…
Not everyone is as understanding. The world will turn it’s back on you, if given the chance!
I guess I’m part of the neurodiverse population! Interesting article, to say the least. Just how I overcome this challenge is anyones guess. This may be a post for another day – if I have the energy!
As I write this, I’m plagued by the headache I woke up with this morning at 4:30am, made worse because I literally feel like a duck. Paddling like the dickens just to keep up! Also, it’s not easy telling your brain not to freak out, when a headache rears it’s ugly head, or you feel symptomatic. Something which I’ve learnt, over the years, to treat with caution, and always will. I don’t take anything for granted.
Does it anger me? Of course it does. Does it scare me? Most definitely! Can I do anything about it? Not really…unless I apply the analogy above, which to be honest, sounds perfect right now!