Losing yourself…

Losing yourself…

I have been feeling this way, more and more, each day. I have good moments and others less so.

It’s a scary situation where you feel like you’re losing yourself. Like you’ve lost control. Helpless to your core and all you want, is out of the jail cell, which is your mind.

Knowing how to deal with what you’re going through on the inside, is hard. It’s confusing. When you see the effects it has on those on the outside, you feel like a burden. Trapped in a box you can’t escape from.

And, because no one can see the effects, you simply seem like someone who has become difficult to be around or deal with. It just doesn’t seem fair when you realise the events that have caused the situation you find yourself in. However, there is no fairness in a situation where you aren’t being intentional, and dealing with something completely out of your control. Asking for understanding is hard when it comes to an invisible condition. Asking for support is hard when no one understands the effects or what’s happening. More importantly, you can’t ask for support when you yourself don’t know what you need.

Trigger warning:

The most overwhelming feeling I’ve had in the moment, is to end my life. I’ve had too many of these over the last few months. My brain spins into a spiral and I can’t think clearly. I feel like I’m free falling and there’s no one there to catch me. Literally feeling like if I had a gun, I would pull the trigger. It’s a “simple” solution to end the source of my discomfort, agony and torture. BUT, I realise enough to know that it won’t be as”simple” for those who love me, to accept.

It’s an understanding I’ve gained into why people decide to end their lives. There’s a suffering causing them to see no other way out. They want the pain (of whatever may be causing it) to end. It’s got nothing to do with them not loving those closest to them. It’s got nothing to do with anyone else, but them, in that moment.

This is one of the scariest feelings I’ve had. It’s overpowering and leaves me feeling like I have no other choice. It has taken quite a bit of soul searching and ultimately, having to make decisions, with my own best interest at heart. There’s the financial impact it will have on my own life, which somehow, when I consider my life, somehow seems insignificant. Some decisions are not ideal and definitely is not where I envisioned my life going. But, I realised that if I am to survive, I need to do what’s best for me, in this moment. Whatever comes next, I’ll have to deal with in that moment.

There’s a link between Hydrocephalus, Brain injury and Dementia.

Advice for patients as well as caregivers:

Be kind. Be supportive. Be patient. Be sincere.


  • Anonymous

    April 3, 2023 at 6:25 pm Reply

    At one point I DID try to take my own life but thankfully it didn’t work.

    Im trying to live in the present but sometimes I still get a little upset with myself for having the unmitigated nerve to do that.

    I mean, after all my family and I have been through. First the doctors giving me little to no hope at birth. They told my parents IF i survived they felt I would not have a normal life at all.

    My whole family prayed for me and decided they would try EVERYTHING they could. They didn’t give up on me. So how dare I?

    I have always, for the most part, been thankful for my life but I’m even more thankful now.

    This is definitely NOT an easy fight for any of us but we DO have some places to turn for support these days.

    Fellow hydro warriors, together we’ve got this!

    • Skyewaters

      April 3, 2023 at 11:18 pm Reply

      Thank you for sharing. I know it’s not easy. The feelings you had are all normal and part of the journey. I take it moment by moment these days.
      Don’t be too hard on yourself. The fact that you’re still here, speaks volumes.💙

  • Anonymous

    April 1, 2023 at 11:10 pm Reply

    Skye…I understand what you are feeling and writing, but I am very worried about you. Please do not end your life. Please find a great therapist and find the help you need. I had a stroke a few months ago. My 32 year old daughter has hydro…I need to be here for her but I am so scared. Please, find your strength to go on. ❤️

    • Skyewaters

      April 1, 2023 at 11:37 pm Reply

      Thank you for your concern. Don’t worry, I won’t end my life. As I said in my post, I’m working on it.

      I’m sorry to hear of your challenges and fully empathise. It can’t be easy for either you or your daughter.
      It has taken me a while to get where I am but I have an understanding of what’s going on. Better than I have at the onset. My aim with these posts is to highlight the effects and to hopefully help someone else who may need validation, or family members understand.

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