Hydrocephalus: Being sent back to an abusive relationship…

Hydrocephalus: Being sent back to an abusive relationship…

Sometimes, being sent home after going to the hospital with, “Nothing’s wrong, everything is normal”, is equivalent to being sent back to an abusive relationship.

You don’t know when the next flare up/episode will happen. You don’t know how badly you’ll be affected. You don’t know if you’ll be in a position to get help if it gets out of control. You don’t know if this time will be the final straw.

How bad will it get?

You don’t know the answer to any of these questions because, you may just have had so many different experiences that, it becomes quite hard to predict.

Left with words: “If it gets worse, please do come back!”, certainly does not help. If anything, it feels like a mockery and patronising to say the least. It leaves you feeling helpless with no real sense of comfort.

No person would seek medical help in the first place if they didn’t feel they needed it.

Maybe, after the first and even second time, you leave thinking: “Ok, maybe that wasn’t actually so bad. Maybe I’m being melodramatic”. Then you start wondering if what you’re feeling is even real and not just all in your head. After a couple of times going back and forth, not really feeling like you’re being heard or taken seriously, you tend to feel like this is your problem alone to deal with. If there’s no real evidence to prove what you’re complaining about, how can anyone really believe what you’re saying? Eventually, you tend not to tell others…no one listens anyway, right? Also, you feel like you’re losing it and somehow, you need to “toe the line”, just like everyone else.

But you’re not like everyone else..!

It’s just a fight you have to keep on fighting against an invisible opponent, who knocks you down, each time. A true bully…

When you don’t get help, you muster up the courage and energy to stand on your own two feet again. No choice. You build up resilience and grow an extra layer of skin as the person you once were, slowly slips away. But, how long do you have to keep doing this? How much abuse do you have to endure? You may even start thinking that this must be normal and somehow you deserve it.

Everyone has a cross to bear, right?

The damage is on the inside, as invisible to those around you, as the condition itself! The pain, the torture, the frustration of it all…

Can anyone blame you for the person you become when this is the reality you face?

I wonder if this is how people in abusive relationships feel? It’s only after it’s gone too far, that people ask: “Why didn’t you ask for help?” Or “Why didn’t you tell someone?”.

Oh, the irony of it all…

Why would you, when in reality most people just want to hear positivity and spout how good life is? If you’re too negative, a bit too realistic in what life is handing you and struggle to handle it in a way that others see as being “weak”, then you’re on your own. People withdraw from you, pass their judgement and move away.

After my last post, I feel like so much has shifted in me. It’s really hard to care about a lot of things and it’s even harder to feel or see the love of well meaning people in my life.

However, I know it’s there but it feels like there’s this thick glass between us and all I can hear is the silence of the torture chamber. I’m alone…so alone!

I take the good days for what they’re worth. I find the moments where I get to laugh and hold on tight.

I live as if there’s nothing wrong and if I lose my mind in the process, so be it. As the saying goes: “When in Rome, do as the Romans do”.

So maybe, in order to survive the Hydro circus, I need to become the clown. It’s clear I’m not the ringmaster and the show must go on!

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  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!

2 Comments

  • Pat

    April 26, 2020 at 5:36 pm Reply

    I think I really can understand how it feels for you, cause what else is there to evaluate but how situations make you feel. I’ve always felt that one of the worst things in life is not being understood. Even when others say they “get it” you basically know they really don’t unless they’ve experienced exactly the same thing! Recently I had been told by a ENT doctor to have a brain MRI because he suspected I had hydrocephalus. Long story short, for months I had severe dizziness, horrible headaches, frequent urination and unusual poor moods that resulted in my mouth having absolutely no filter and whatever I said was not flavored with sugar, more like vinegar. hard for those around me to deal with and not at all like me. The dizziness alone made me start with the ENT as I had no idea where to turn first. I never got the MRI…..I was extremely dizzy already that day and whatever extra mechanism was out on my face, took me over the edge and made me physically ill. I opted for a CT scan instead. That showed absolutely nothing, and to some that may have been good news, to me it left me out in the cold with nothing to blame my symptoms on. Therefore, family thought me “A CRAZY OLD LADY” , I am 72 years old and just realizing that I am old…until recently, active and pretty healthy. THe only further advice from this doctor was to see a neurologist and ophthalmologist . Because of COVID 19, there were and still are no neurologists taking on new patientsI. Therefore i decided to investigate my use of supplements, medicines essential oils and solutions I was using on a daily basis to see what else could be causing my symptoms. The only unusual remedy I was using was DMSO an industrial solvent used in veterinary medicines, but I was using for for pain and arthritis. It really helped with those ailments, but found it also causes all my same symptoms. It’s been two months of not using this and most of my symptoms have subsided, to the point I don’t feel crazy anymore, but I do understand your hydrocephalus condition much better. First, it’s a very difficult condition to describe, and hard to diagnose, The symptoms seem to come in “waves’ so sometimes you’re almost “normal”, then without warning, you feel so horrible, and all this can happen in a sort span of time. One minute your fine to go out and do things, and the next you are done for the count. SO hard for others to understand and deal with. When you wrote how you were dismissed and sent home to an “abuser”’, I really I understand the feeling. Back to the worst feeling of being misunderstood. You decide that this is how it’s going to be and feel you’re in an impossible situation that will not change. Like an abused wife that has no way out because of being financially challenged, children that still need you , or a husband that truly believes it’s all your fault and no one would believe a “nice guy” like him could ever be an abuser. It’s all because you are like you are, not because you have a serious misunderstood affliction.
    I enjoy reading your blog and believe those who read it will begin to better understand what those who suffer with this are going through on a daily basis, Keep expressing yourself this way as it must be a bit of stress relief giving information that promotes understanding. Don’t go through this being misunderstood!

    • Skyewaters

      April 26, 2020 at 8:57 pm Reply

      Thank you Pat! Your comment certainly makes me feel the opposite. Not everyone gets it and not everyone will, and that’s OK.

      You are right, these posts are a stress reliever for me and a coping mechanism to not bottle it all up.
      I’m glad you managed to rule out what was causing your symptoms and that you feel some relief. I pray things improve for you fully.💙

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