A condition like Hydrocephalus casts some of its own burdensome moments on the person diagnosed with it, amongst other things. It’s unpredictable nature, leaves nothing to be desired. The burden wears heavy and so too does the responsibility of it all, like:
- Having to support your entire family – 5 in mine (thankfully my husband now has some form of income, having started his own business, thanks to the COVID-19 situation – just how lucrative or stable this is, who knows. I’m just thankful nonetheless.
- Knowing that ill-health and symptoms simply have to be managed despite it being beyond your control – You simply must push through!
- There have been many times where I put the needs of others above my own, despite feeling like I was dying a slow death whilst in the grips of pain (unbeknownst to them because I hide it so well).
- Feeling guilty about being diagnosed with an incurable and painfully invisible condition, at the peak of my life and being reduced to a lesser version of mother and wife.
- A condition you constantly feel needs justification or defending, especially when you don’t have the full support and understanding of your family.
- Feeling lonely in the fight against all of it…
- Knowing that regardless of you feeling all the physical symptoms, no one around you fully grasps the extent of what you’re enduring…
You’re left feeling less than what you are and totally helpless. There are so many days when I feel like dying would be the best solution for everyone. Even with this thought, the amount of guilt I shoulder, wears heavily on me as I let the emotions flow from me – in the shower, into my pillow late at night or even while driving alone.
I know, at this point, some of you are probably saying; “Don’t!” or “Why do that to yourself..?“
I’ve recently reached a point where I came to the realisation that what’s been bugging me for such a long time, is the fact that I simply can’t fix it. Having undergone the thought process that goes along with this (in the mind of an over thinker), I decided to change my attitude towards most things – medically-related that is. I haven’t been as eager to get all the results of the invasive testing I had done last week, nor have I focused on it solely (as I normally would). Thankfully my thyroid nodule biopsy came back benign!
When asked by a friend how my tests went and what the results yielded, I replied; “Out of sight, out of mind. Trying not to focus on anything other than what’s in front of me like; work, my dog, plate of food…”, all separately of course. Living in the moment. Thankfully, I haven’t had any symptoms (touch wood) of which to complain, or else I’d be right back on the paranoia/fear train of it all, following my natural instinct.
The point is, if you are like me, the main breadwinner i.e. source of income for your family, you would be able to relate. I don’t ever want to think of a life where I am not able to provide for my family because of my condition. Something that scares me and the probability of which, is highly likely, given the circumstances. But, so is death…
Having experienced surgery gone wrong before, I suppose I’ll always have that niggling feeling that it can happen again. None of us have any guarantees that everything will go smoothly, despite so many of these operations being performed on a daily basis, around the world. I’m human after all and no amount of telling me that I need to change that train of thought will be successful, regardless of all the hope and faith I have at any given point in time!
I feel an insane need to push myself to be better, to work harder, to succeed, to earn more money, to push past my memory challenges, increasing cognitive challenges, and earn more certifications…downward spiral. And, because I know I have these challenges, I feel like I’m not good enough at my job regardless of others telling me I am. It’s the necessary factor which sustains our livelihood – all resting on my shoulders, all of the time. More importantly, it’s the amount of effort I know I have to put in, and constantly being like a duck, that hits me the hardest – but no one understands!
It truly feels like I’m shoveling shit uphill but it’s more Mount Everest than a hill!