Maybe that makes me sound weak…maybe it makes me seem like the biggest wuss…who knows?
I’ve thought about why it is that every time I get a diagnosis (with the words life threatening at the end of it), it gets me running around in a mental panic. I realise that amidst all of it, I probably sound like the most paranoid person on the planet (or close enough).
- You could go into a coma because of your slit ventricles or
- If your Hydrocephalus is left untreated, it could lead to death or
- If you do have scar tissue and, it’s left untreated, it could be fatal.
It seems like my life is being lived on what “could be” and it’s driving me nuts. I’m so tired of living like this and as much as I don’t want to anymore, I find it difficult to be any other way. There’s so much literature and warnings on how one shouldn’t dismiss the warning signs of failure with Hydrocephalus. How do you live your life not worrying and being dismissive when inside yourself you feel an obligation to your own body…your own life?
I’ve listened to the people around me before, in one of my panic states, and eased up a little. I’ve brushed aside any nudge my body physically gave me to pay a little closer attention. And then, I’ve been pulled backwards and forwards into fighting and then not fighting against what I think is real and what the doctors say is not. It’s a constant struggle and one which can surely drive you to the brink of insanity especially as you question what is real and what is not. “Am I feeling a certain way or is that just my imagination? Did I really experience X or could I have exaggerated a tad?”
A few weeks ago, I had a hysterectomy and just before that, I was told that there is a possibility my previous VP Shunt caused some scar tissue in my abdomen. The Gastroenterologist seemed convinced after doing a Gastroscopy, that this is what’s causing my pain and discomfort. I read up on it and went into the downward spiral of the “life threatening” zone and felt ill to my core.
Envisioning the worst and feeling helpless.
Then, at the follow-up, he suggested a few different medications we could try (all things I’ve used before). In all honesty, when I rationalise it, it seems futile to let drugs solve the problem when it’s something physically inside of me that needs intervention. Now, this could be via surgery which is a “damned if you do, damned if you don’t” situation as I explained before. Or, maybe I need to do some more research into alternative ways of dealing with it (truth be told, my conclusion above remains the same).
What frustrates me to no end, is the letter to my GP from said Gastroenterologist, saying that he can find no evidence of what’s causing the pain. No mention at all about his suspicion regarding the scar tissue or that he’s referred me to a surgeon. Has this somehow become irrelevant? If it is, then why the hell mention it in the first place?!
Coming back to the fear aspect…
Is it possible that I’m not seeing clearly and that I’ve quite possibly lost the plot? Having a discussion with my husband about my upcoming visit to a surgeon to discuss the scar tissue possibility, had him rebelling and advising that I “wait and give my body time to heal from the surgery I’ve just had“. I fully understand where he is coming from (a place of love) but sadly, my place of fear trumps any of that at this point in time. More importantly, I recognised a sense of fear, clouding his place of love. Quite possibly this fear is a selfish one where he doesn’t want to lose me if anything goes wrong, or maybe it’s because he’s just the kind of person who doesn’t go to the doctor for anything…because of fear…(maybe).
Granted, our fears are seemingly different but it’s fear nonetheless. I’ll assume that the fear from a loved one or acquaintance, is driven by their concern, which is great! But, I have to ask…Why is it OK for their fear to be listened to or acted upon but not yours as the patient? No sane person would willingly agree to being cut open. In fact, I for one hope and pray that I never need to face brain surgery ever again.
Further to this, there’s the concern about how this affects my job. All the time I’ve already spent away from the office and now the possibility of more time away…just more fear but a different kind. It requires me to put things into perspective and prioritise what’s important to me.
So, here I am, considering and anticipating further surgery to be inflicted on my body because of the possible scar tissue. And, it’s not like I want to go lie on that table again, but…what am I to do with the “could be life-threatening” part of this equation?
Fear…a thing that can drive you insane OR something that forces you to grow a pair…steel ones at that!
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I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!