Pills, doctors and lots of "by myself"

I never have imagined that having hydrocephalus would get me to the state I am in at present. I am very much alone. I have but one person that will understand me on the phone because my family thinks I complain to much. They do not have my condition and do not know what it is like. Focusing on a certain thought is becoming harder for me. I have a seizure disorder and take many pills which interfere with my thinking and focusing. I am being told 'why can you not remember for 2 minutes?" I get so flustered that I do not know how to answer that when it is asked. To much emotional pain to bear at the moment. I guess it is good to let everything out whether it be in words or in tears.

Thank God I have this to just talk about what is going on inside me.

11 Replies

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  • Hi Empath,

    Well your in the right place to let your feelings out. Some times its better to chat than to be in your own mind and I know how that can feel.

  • Welcome Empath. I'm glad you've found us ; you can talk freely here without judgement or criticism.

    Can you tell us a little more about your history & how/when you developed hydrocephalus ?

    Regards Cat x

  • Hi Cat. I developed hydrocephalus when I was born. I spent many times in the hospital. I am in my late 50s now and back then they did not have the technology they do now and as a result I spent a month sometimes in there. I think it was like planting a seed for what was to come later in life for me. (that may be my depression talking). It hurts me so much to talk about this I am in tears just typing this. The doctor that worked on me ended up saving my life for it was the build up of fluid in my brain which was causing kinks of fluid in the nerves. The skull is very soft when a baby is born and therefore it is not fused or hardened so to speak. Due to the build up of fluid it made my head expand. The fluid had to go somewhere so just expanding outward was the direction. I have had many problems with that when I was little. It was the foundation for a life of being alone just because of me looking different. (I have never been able to talk like this since I was breathing). I find it so difficult to talk to anyone when in conversation. The only people I relate to are children because of them overlooking my appearance. I have been made fun of constantly and have had to "suck it up: because of no one being there that would understand me. They are not me so why did they tell me that "you complain to much" or "snap out of it". I have dealt with seeing a therapist which was not a good fit for me. I am also presently going back and forth now as I write this with ideas or events. I cannot focus well due to seizures I have along with this. If you would look up vagus nerve stimulator then that would tell you the extent of why it is needed to control a person's severity in seizures. I take many seizure medicines as well. This is to much for me at the moment to say so I have to stop. I am also having trouble focusing too. Thank you for letting me just open up. I hope I can write this much again.

  • Well done indeed Empath for what you've managed to tell us so far. I'm sorry it has been such a struggle for you and that you feel so isolated, but now you've found us you never need to feel isolated again.

    Consider us your friends and talk to us gradually, when you feel up to it. You won't be judged and this will always be a safe place for you to come and share your feelings.

    Come back when you're ready ; you obviously have a lot of pain which needs offloading.

    Kindest regards, Cat x

  • Hi Cat.

    When I read your reply to what I read about my hydrocephalus I froze. I did not know how to handle the fact that I could come and speak from my heart and not be judged. I stood here for the longest time reading your reply and am still trying to get it through to me that everyone is not out to get me in some way. You had mentioned in your reply to me that I have a lot to offload. Indeed, you are 1000% correct. It was such a good thing to know that someone out there will listen to me. It is the reason why I sat here in shock, Thank you for what you said to me. It helps to know that I can talk from the inside.

    Ok have a good day for yourself there.

    Tom

  • I know it's a whopping great cliché Tom, but I really felt your pain whilst reading your account of you life and how events have affected you since childhood.

    So I feel privileged to have reached you, and relieved that you might now feel trusting enough to continue your story here, among friends.

    When you're ready, please tell us more about what your life is like and how you cope on a daily basis. I hope you can eventually take for granted that you have a place here for as long as you need it.

    Cat xx

  • The walls I have put up as defense around me are so thick that I don't know when I will ever penetrate them. I am learning a piece on the piano that I am trying to play. It is a very difficult piece but one I learn it then I will have reached a goal. If you have ever heard of the rock group called The Who, Cat.........they have made a song called The Real Me. The words have to do with a person trying to come to grips with the struggles of ever day life and the way he perceives himself. This song has become my theme song.

    I am switching gears here: when I came to make this note I stayed on here at a blank screen for the longest time. I still cannot come to grips yet with the fact that I have a place to let go of "trials and tribulations" so to speak.

    Sometimes when I think of something or want to say something either here or face to face I loose track of my thinking. My neuorologst told me it was due to my hydrocephalus. I don't know what to make of it meaning...I am very confused. it is time to rest. Possibly dream of peace.

    thank you to you Cat and to anyone else who reads this. It helps me very much. I have a problem with self acceptance. I will give a try and being kind to myself maybe. That has been rough but.....here is a safe outlet to try again.

    Thank you for letting me say all this stuff here.

    Tom

  • Hi Tom, We find peace in so many different ways my friend, we have our own paths and journeys and they are all very individual to us, no one knows what we have endured on these journeys or what we have encountered and what feelings if any and changes that are made. My journey took a change on May the 16th last year and I'm now a much better person for it but God its taken some time dedication and acceptance. By coming on here and expressing yourself and chatting about your stuff and your journey I'm sure you have made a significant change that will help. God bless matey and have a fantastic Friday. Nick

  • Hi Empath06.

    I feel so bad for you. But as Cat says we are all here for you and are hopefully a bit more understanding than most. I also suffer from Hydrocephalus but I didn't get mine until I was 12. It was the result of a brain AVM blocking the normal path of CSF. Fortunately for me this was in the 80s and by then the medical profession knew how to drain the CSF with a Shunt. My first Shunt was fitted when I was 14 and I have had it revised several times since. I think this saved me from the sort of issues you are experiencing now. If there is anything I can do please let me know. But thanks so much for sharing.

  • I am glad that everything has been going well for you. I have a question. Do you find it hard to talk to anyone about hydrocephalus when you are in front of them? I ask this because I think in my experience they do not have the time to sit and listen. Can you say anything about that? if it is difficult to talk about this understand completely. Thank you though for replying on my initial post.

  • Tom, I've just played 'The Real Me' on YouTube and I get why you're attracted to it. I'm sure it's relevant to many people here who's true personality is obscured by their brain injury.

    But in your case it's especially poignant, from what you've described about your issues, and when I listened to the words it moved me deeply. I shall play it sometimes and think of you.

    So..................learning to play the piano ! It's the most wonderfully expressive instrument and my favourite. I love Grieg and Rachmaninov but also modern stuff like Richard Clayderman ; in fact any piano music which is melodic and well played.

    I took piano and music lessons about 20 years ago but had to give it up when I could no longer afford the fees.

    I did used to play the piano accordion when I was a child ; couldn't read music so played by ear but it was a borrowed accordion and no longer available when the owner moved away.

    If you have a piano at your disposal, please continue to play ; it's such a wonderful skill to have. :-/

    You mentioned 'blanking out' when talking or typing. This is a classic after-effect of most brain injuries. I prefer communicating online as, when I go blank, no one has to wait around whilst I gather my wits again and finish what I want to say.

    I hope your weekend wasn't too challenging and you've had some pleasant moments here & there.

    Talk again soon Tom, Love Cat x

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